The Gluten-Free Lie: Why Most Celiacs Are Slowly Dying

Conventional medicine usually works like this…

I have a problem, the doctor figures out what the problem is, and gives me a conventional prescription generally supported by Doctors, researchers, and the FDA.

This prescription is supposed to be relatively safe and effective in accordance with the laws in the United States and most modern countries.

But what if the conventional prescription doesn’t work?

Like people with Celiac disease that follow a strict gluten-free diet and don’t get better…

Does that Mean the Gluten-Free Diet is the Wrong Prescription for Celiac Disease?

Earlier in this series, I showed you that gluten is the toxic invader that causes Celiac disease. Logically, removing the intruder is the first step towards treatment. That’s why anyone diagnosed with this autoimmune condition gets the conventional Celiac disease prescription: follow a strict gluten-free diet for life. But the latest Celiac disease research is painting a very different picture.

The University of Chicago has one of the leading treatment and research centers for Celiac disease in the U.S., so my jaw dropped when they posted this:

“While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal.” [1]

60% odds are worse than flipping a coin…

It would be easy to read that and think, “So it’s the people that don’t follow a strict gluten-free diet that don’t heal.” But to be honest, I don’t think they said it as strongly as they should have. Here’s a recent study that paints a much darker picture of the Gluten-Free Diet’s success rate.

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Only 8% of Adult Patients Healed on a Gluten-Free Diet…

A 2009 study in The Journal of Alimentary Pharmacology and Therapeutics looked at 465 Celiac disease patients and found only 8% of adult patients reached “histological normalization” after following a gluten-free diet for 16 months, meaning their gut tissue completely recovered to that of a healthy person. The authors stated:

“Complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to GFD.” [2]

These people followed a strict gluten-free diet for 16 months and most didn’t heal their gut. The success rate of the conventional Celiac disease prescription isn’t working… and the research is exploding the truth.

Another 2010 study in the American Journal of Gastroenterology looked at 381 adults with biopsy-proven Celiac disease. The authors found small intestine mucosal recovery occurred in only 34% of participants following a gluten-free diet for 2 years. They concluded:

“Mucosal recovery was absent in a substantial portion of adults with CD after treatment with a GFD.” [3]

The Conventional Merck Manual definition for diagnosing Celiac disease provides that: “The diagnosis is confirmed by an initial microscopic examination of a biopsy specimen revealing flattened villi of the small intestine and by a subsequent improvement in the lining after the person stops eating foods containing gluten.”

These studies clearly show that when a Celiac stops eating foods containing gluten, the intestinal lining isn’t healing. But that’s only scratching the surface of what’s going on…

65% of Gluten-Free Celiacs Still Have a Raging Fire in Their Gut

The same 2009 study in The Journal of Alimentary Pharmacology and Therapeutics of 465 Celiac disease patients 16 months gluten-free found that 65% still had “persistent intraepithelial lymphocytosis,” a.k.a. inflammation in the gut. [4]

Their intestines are on fire with inflammation even after 16 months gluten-free. Why is that important?

We know gut inflammation is associated with a laundry list of health issues, including cancer and early death. That’s bad news for the conventional Celiac prescription and even worse news for the people not getting better on a gluten-free diet. Want more evidence gluten-free doesn’t put the fire out?

A 2008 study in the Journal of Inflammation looked at 18 symptom-free Celiac disease (SFCD) patients and found they still had elevated markers of gut inflammation even after 2 years on a gluten-free diet. The authors reported:

“Faeces of both active CD and SFCD (symptom-free 1-2 years on a GFD) patients, representing an imbalanced microbiota, significantly increased TNF-alpha production and CD86 expression in PBMCs, while decreased IL-10 cytokine production and CD4 expression compared with control samples.” [5]

In another 2009 study from the American Journal of Gastroenterology, researchers looked at small intestine biopsies from 45 children with Celiac disease and 18 clinical controls. The authors found an increased presence of T cells (inflammatory marker) in well-treated CD patients:

“The long-lasting presence of high frequencies of T cells in the epithelial compartment in well-treated CD indicates that the epithelium is stressed possibly because of constant attack.” [6]

Both of these studies looked at patients that are supposed to be “healed”… supposedly “well-treated.” Even though they appeared to be symptom-free, the medical tests paint a much different picture. These asymptomatic adults and kids still had inflammatory fires raging in their gut… promoting further disease development (like Cancer).

So far this research has only reviewed patients following a gluten-free diet for 1-2 years… but what about long-term? Does the body just need more time to heal and get back to normal?

56% Have Poor Vitamin Status After 10 Years Gluten-Free

A 2002 study in the of Alimentary Pharmacology and Therapeutics looked at the vitamin status of 30 adults with Celiac disease showing “biopsy-proven remission,” after following a gluten-free diet for 8-12 years. They found that 56% had poor vitamin status, suggesting that proper nutrient uptake is not occurring. The authors concluded that:

“It is generally assumed that coeliac patients adhering to a strict gluten-free diet for years will consume a diet that is nutritionally adequate. This is supported by the demonstration of a normal bone mineral density up to 10 years of dietary treatment. Our results may indicate otherwise. We found signs indicative of a poor vitamin status in 56% of treated adult coeliac patients.” [7]

Even after following the conventional Celiac prescription for 10 years, 56% still showed signs of poor nutrient uptake – meaning their digestive system still isn’t working like it’s designed to.

That means after 10 years of being gluten-free, HALF of all Celiacs are likely starving for the critical nutrients required for health and longevity. It’s no wonder we have a 77X increased risk for lymphoma. [8]

The Gluten-Free Diet Doesn’t Fix Leaky Gut

Earlier in this series, we discovered that gliadin initiates leaky gut by increasing the zonulin protein in people with Celiac disease. And later, we learned that fixing leaky gut is absolutely essential to reversing the damage from Celiac disease…

But the gluten-free diet doesn’t fix leaky gut…

As it turns out, when Celiac disease patients follow a strict gluten-free diet, their zonulin levels do fall (which is good). But research shows that they still have elevated levels of zonulin compared to non-Celiacs. And when the zonulin levels are still high… the Tight Junctions can’t restore normal function and the leaky gut remains.

Chris Masterjohn found the same thing reviewing a study by researcher Allessio Fasano,[9]

Remarkably, they found that celiacs produce 30 times as much zonulin as non-celiacs, even though the non-celiacs were not eating gluten-free diets while the celiacs had been off gluten for over two years!

Here’s a graph of their data:

 

This is remarkable because even though the point of the study was to show that gluten increases zonulin production, the controls were eating gluten yet had infinitesimal levels of zonulin production, while the celiacs had not eaten gluten for at least two years yet still had very high levels of zonulin production. This suggests that something besides gluten may be causing zonulin production in celiacs.

Chris also pointed out the same study looked at Leaky Gut in Celiac disease patients following a gluten-free diet for more than two years:

[NOTE: in the graph below, the smaller the bar, the leakier the gut is]

Here they measured trans-epithelial electrical resistance (TEER) of intestinal tissue taken from gluten-free celiacs and gluten-eating controls. TEER is an estimation of the leakiness of the gut, where a lower value indicates a greater level of leakiness or permeability. They found that tissues taken from controls who had been eating gluten had three-fold less leakiness compared to celiacs who had been off gluten for over two years. This, again, suggests that something besides gluten may be contributing to leaky gut in people with celiac.

So, in summary Chris pointed out:

  • Celiacs produce 30 times as much zonulin as non-celiacs, even though the celiacs had been off gluten for over two years!
  • Intestinal tissues taken from controls who had been eating gluten had three-fold less leakiness compared to Celiacs who had been off gluten for over two years (so Celiacs had a much leakier gut, even while eating gluten-free).

But the evidence doesn’t stop there…

A 2008 study in the Brazilian Journal of Medical and Biological Research tested for leaky gut in 22 Celiac disease patients who were on a gluten-free diet for 1 year. They found these patients following a gluten-free diet still had a much leakier gut compared to healthy controls eating gluten (0.013 vs 0.003, P = 0.001). The authors concluded:

“This means that, at some time, complete recovery of intestinal villous may not have occurred and an inflammatory process may have persisted.” [10]

This is crazy! All this research shows the gluten-free diet doesn’t heal Celiac disease. In fact, the evidence suggests that in many cases, leaky gut and inflammation remain high for years on a gluten-free diet. This spells bad news for anyone with Celiac disease relying on a gluten-free diet as the only treatment protocol…

It breaks down like this… high inflammation, poor vitamin status, and leaky gut persist on a gluten-free diet which leads to one thing: untreated Celiac disease…

And Untreated Celiac Disease Will Kill You… Fast

If you don’t completely heal from Celiac disease, you’re going to die much sooner than healthy people. In fact, one of the largest cohort studies on Celiac disease patients and mortality published in the Journal of The American Medical Association found that:

  • Those with Celiac disease (villous atrophy) had a 2.80-fold increased risk of death the first year after diagnosis and a 39% increased risk of death over the study period

But the authors didn’t stop there… they also looked at people with intestinal inflammation. Remember the two studies on “well-treated” (asymptomatic) patients that still had inflammation? The authors found:

  • Those with intestinal inflammation (and not villous atrophy) had a 4.66-fold increased risk of death the first year after diagnosis and a 72% increased risk of death over the study period. [11]

A 72% increased risk of death! 

In other words, if you’re a symptom-free Celiac and your labs show signs of gut inflammation… you’re going to die much sooner than you think. 

So, Should Celiacs Eat a Gluten-Free Diet?

Yes… gluten is still the kryptonite in Celiac disease, don’t ever eat it. Following a gluten-free diet is a requirement for treating this autoimmune condition… but you can’t stop there.

This evidence clearly shows that only following a gluten-free diet doesn’t fix leaky gut, gut inflammation, or a damaged gut lining. That means the gluten-free diet isn’t enough to treat Celiac disease patients and anyone using it as the only protocol is at risk for dying much sooner than they should…

Like I almost did.

The conventional Celiac prescription is incomplete and not working. There needs to be more. 

The real solution is fixing leaky gut.

Reversing Leaky Gut is a critical step in reversing Celiac disease… and now you know that gluten-free doesn’t cut it.

So, fixing leaky gut is ground zero… where it all starts… and where medicine MUST look first when treating Celiac disease.

See, I’m completely confident my Celiac disease has been reversed because I healed my leaky gut… instead of just staying on the “Celiac Disease Diet.”

What does it mean when I say I believe I’ve reversed my Celiac disease?

I’m not saying someone with Celiac disease can eat gluten again, or that someone with a completely destroyed thyroid can get off medication.

My definition of reversing Celiac disease is turning off the immune attack against the body for good, and then repairing the damage it caused so you live a happy symptom-free life.

In some cases, the damage has gone too far and can’t be repaired. How long your body has been waging war on its own tissue will determine what “reverse” means to you. If RA goes too far, permanent joint damage can occur. In autoimmune thyroid diseases, the thyroid tissue may be beyond repair. But what if you could stop it before it even got to that point… or before it went too far?

If you or a loved one is struggling with Celiac disease, and the conventional treatment isn’t working, you know how crippling it can be. I know, because I’ve been there, too. 7 years ago, Celiac disease almost killed me.

But what if there was a way to turn off Celiac disease that ACTUALLY worked?

What if there was a way to calm down your immune system and allow it to begin to repair the damage?

Based on the work of Dr. Alessio Fasano, one of the first places to start is your gut… and we’re here to help you.

We created an online presentation called, “How to Turn Off Your Autoimmunity — and Restore a Healthy Immune System.”

It’s completely free, and we dive deep into your gut health and how to begin to stop the immune system from attacking itself.

You can register here: http://solvingleakygut.com/webinar/internal-autoimmune/

You could spend years trying to figure out how to “fix” your immune system and continue suffering on The Celiac Disease Diet… or you could register for this free one-hour webinar and we’ll show you how we did it.

If you can’t attend at the scheduled time, we will send you the recording, but you must click here to register to make sure you get the link the next morning.

As someone who suffered with Celiac disease for years and almost gave up hope, I know your struggle. I hope you join us for the webinar to learn more about how I turned off my autoimmune response and restored my health.

I’m so grateful to support you in health.

-Jordan

P.S. – In the last post, I showed you that fixing leaky gut is a critical step in reversing Celiac disease… and now you know that gluten-free doesn’t cut it. In the next part of this series, I’ll explore the Leaky Gut-Celiac connection and what to do about it.

Here’s the next post: “The Toxic Truth About Gluten-Free Food and Celiac Disease

Jordan Reasoner

About Jordan Reasoner

Jordan Reasoner is a health engineer and author. He was diagnosed with celiac disease in 2007 and almost gave up hope when a gluten-free diet didn’t work. Since then, he transformed his health using the SCD Diet and started SCDLifestyle.com to help others naturally heal stomach problems. You can check out his story here and find him on Google+, Facebook or Twitter.

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181 thoughts on “The Gluten-Free Lie: Why Most Celiacs Are Slowly Dying

  1. Avatar

    I am nervous, I have been gluten free for almost 7 years and yet I still have gut issues. I have also since gone grain free, dairy free, egg free, sugar free and nut free. I cannot figure out how to finally heal. But I know I am not absorbing nutrition. I eat perfectly healthy but if I don’t absorb it it doesn’t matter. I look forward to your seminar.

  2. Avatar
    Jessica Apling says:

    I stumbled upon your page yesterday, right before i went to the ER for severe stomach pains. I was diagnosed with Celiac in March of this year. Like the girl above my comment i can still eat gluten and not have any effects. My rib cage is painful to the touch but my ultrasound and xrays have came back with no markings of imperfection, my recent stomach pains have been near and around my belly button but they have refused to do any other testings. I would love to give the leaky gut fix a try.

  3. Avatar

    Hey, not sure if anyone can help me here but I’m an aysomptommaic celiac diagnosed 6 years ago. I found out off a blood test, then had a conclusive biopsy indicating i have celiac disease, yet to this day I could eat any flour-based products ie pizza, bread, anything with flour in it and not feel any side effects but a bit of trouble keeping focused. I wouldn’t have any pain in digestion of these products if I ate them right now, wondering if I should get tested again

  4. Avatar

    I’ve been searching for a year in a half now trying to find something anything that will help this pain I’m in. I’ve been diganosed with celaic disease a last year. I’ve still been going to different doctors because even though I cut out gluten, dairy, soda, soy my stomach still hurts. I have lost of apateite I don’t feel hungry anymore. My stomach feels full when I eat just a few bites. It cramps and it aches. My joints hurt and I’m starting to get a headaches Doctors keep trying to give me anti-depressants. But I’m scared this may be cancer or something else I’m not sure. I’m only 19.
    I hope this website helps, I’m trying to cook at home but I can’t offord an oven right now so I’ve been living off of rice.

    • Avatar

      People don’t heal because they eat gluten free foods that still has gluten in it. 20PPM is not gluten free. Corn can effect people like it was gluten and it is a type of gluten. They got gluten in everything and everwhere. I get sick on gluten free foods. There are very few that don’t make me sick. Pamela’s is one of them.

      I consider eggs can carry a tad bit of gluten in the egg that the chicken eats. I had one insist that it can’t but I looked it up and one person did do research on such and a protein of what they fed the chicken did show up in the egg. I was not gluten but that can happen so can gluten. The lady was very insistent that I was ignorant on it. No my body tells me what it can take and can’t. I ate grain free fed chicken eggs and I was fine. So since it is winter I had to give up eggs again. The gluten free society has a different take on the standard GF diet. I think there is something to it. 10PPM is too much gluten. They can test down to 3 so that is the level gluten free food should be tested at and not a bit higher.

      You will have to become and activist in this way of life. They even don’t have gluten free foods in senior centers and meals on wheels or anything and that is a violation of the disablity’s act.

      I know how it feels to be sick much of the time.

  5. Avatar

    Hello, does anyone have any knowledge about blood test results? I’m so confused and depressed about my findings. I don’t really have any digestive symptoms, mostly tingling, stinging, gnawing feeling in my feet and legs. At times it feels like a burning feeling under my skin. Some fatigue and brain fog.

    • Avatar

      HI Gail, sorry to hear you’re feeling this way. I’d first recommend a new practitioner who is more willing to work with you and explain your results. (Make sure you ask them to if you haven’t yet!) If you’re interested in a new practitioner, you can find one here: http://scdlifestyle.com/practitioners/ It sounds like you might have some thyroid issues just based on your symptoms, so perhaps you can ask your physician about that specifically.

  6. Avatar
    InflammatoryThoughts says:

    I had a poorly organized Celiac test (preceded by about 5 months of GF eating). Yet, when discussing the results the doctor was certain the relevant antibodies should show up at a detectable level, even though I had been GF (I didn’t properly communicate this at the time of the test, I guess). Yet I look at Celiac.org indicates that all blood tests *require* one to be eating a gluten-containing diet to be valid. Why isn’t this made clear to every single medical professional that can order the test? I’m now going to see about a genetic test to see if I can rule out CD (doubt it) and follow that up with a biopsy.

    I’ve been unsure if my GI issues are at their core SIBO, dairy-related, or as a handful of all-together-too-smug commentators think it’s useful to suggest: “in my head.” It’s probably worth mentioning that overreaction likely holds fewer consequences for most people than missing a diagnosis. This is totally the inflamed me talking, but man is it annoying to hear arguments like “well there’s something to be said for going out with people and just being able to enjoy food.” Duh. But, there’s also something to be said for not getting brain damage from your food. 😀

    I intentionally ate a piece of wheat bread last night to clarify the issue. The problem is definitely not in my head. Now that I’m suffering the consequences — irritability, bloating, joint pain and other random pains throughout the body, difficulty breathing deeply, reduced nerve sensation in my extremities, poor circulation, and big cognitive/social deficits I won’t describe in detail, I’ve decided to do some internet therapy by posting these gluten-reaction inspired thoughts. Please forgive any poor reasoning or negativity–normally I’d be more positive.

    The worst part is realizing this issue could have been ongoing for years, decades, or one’s entire life. What kind of person would each CD or gluten-sensitive person be if they had never experienced the damage to their health this brings on? I wonder because my worst symptoms seem to be mental. It also seems clear that many angry and dissatisfied people may simply be suffering from inflammatory conditions.

    Back to an elimination diet of whole foods and 0 whole grains.

  7. Avatar

    Should Be Obvious.

    Gut Health is a lifestyle, Not One Thing.
    The Functional Medicine Protocol.

    BTW, MAYBE POSTS SHOULD BE CURRENT TO OLDEST.
    JUST A THOUGHT.

    I LIFESTYLE COACH, FOR FUN, IN BELIZE.

    A GOOD FRIEND’s MOTHER HAD AUTO-IMMUNE LIKE ALLERGIES.
    SO BAD, SHE QUIT HER JOB.

    I SUGGESTED
    GLUTEN FREE, PROCESSED (CHEMICAL) FREE, NO DIARY FOR AWHILE,
    FERMENTED FOOD PER DAY, PROBIOTICS,
    EXPLAINED BONE BROTHS TO HER,
    ANTI-INFLAMMATORY & ALKALINE, LOW GLYCEMIC FOOD PLAN.

    GETTING A FULL COMPREHENSIVE FEMALE HORMONE PANEL.
    YES, HCL & DIGESTIVE ENZYMES.

    FEW ARE READY FOR GREEN COFFEE ENEMAS, UNLESS LATE STAGE CANCERS.

    ANYWAY, IN JUST 7 DAYS, ALLERGIES GONE & lost 7 LBS.
    HE IS NOT OVER WEIGHT.

    AS SAYER JI, MARK HYMAN, TY BOLLINGER, THE HEALTH RANGER, MEECOLA, DONNA GATES, PEARLMUTTER, ALL THE ESSENTIAL OILS PEOPLE, AND A WEALTH OF MORE,
    **THINGS ARE CHANGING.
    A MOVEMENT.

    CHEERS

  8. Avatar

    I always knew there was more to just a GF diet. I was diagnosed with celiac disease about 3 years ago and my health is plummeting. I need help. I am scared. If there is a product I can purchase to reverse leaky gut I NEED to get my hands on it. Please help me! )’:

  9. Avatar

    I haven’t been diagnosed with celiac but have all the signs and am REALLY suffering and feel exhausted because my symptoms seem to be worse then alot of ppl. I need help on how to control this its a horrible disease. I have a caffeine sensitivity as well and its all hell. I eat gluten free but its not enough although im sure stress is to blame also. i need to know if i should go to a specialist or just my primary md for help
    Angela

  10. Avatar

    There is a bunch of recent research showing how the endocannabinoid system plays a significant role in Celiac and other digestive system autoimmune diseases, and I’ve seen a significant amount of anecdotal reports of successful treatment with medical marijuana. More compelling is the fact that The most effective forms are in the raw, unheated, non-psychoactive state such as CBDA and THCA – meaning you can heal without feeling high. This could be the treatment that so many people need, as diet alone is a long, hard road to recovery

  11. Avatar

    I am a celiac. I am 30 years old and i am an rn. It frustrates me that the medical field does not embrace this solution. It seems like they want to kill us. Or they are sutroinded by so many people who do not want to recover from illnesses. My illness has progressively worsened over the past 10 years. In the past 3 years, After development of severe neurological symptoms, nagging muscle spasms, blurred vision, headaches, mood changes, extreme fatigue, unbearable stomach pain as well as back and joint pain that had me barely able to function at work and unable to get off the couch at home. If i had one beer it would knock me out for hours, I’d be so slept I could barely open my eyes. i would get severe brain fog. It was very depressing because i have always been active and sharp. I thought i had cancer and had many tests done. I thought it was impossible to hurt as bad as i did and not be dying. So anxiety was increasing along with anger and disappointment couldn’t find the problem. Blood test came back negative and I felt like a hypochondriac for pressing the issue especially as an rn. I mean come on I’m one of them right? I finally took the illness seriously thanks to the encouragement of my wife. I started out listening to my body and eliminated the things that actually felt like poison when I ate them (within 30 min of eating gluten severe reaction extreme pins and needles pain in my abdomen, symptoms mentioned above and extreme bloating that made my chest feel crowded and I would get heart palpitations and be short of breath . My wife in her wisdom suggested paleo. I went full paleo, but avoid eating a lot of meat. I eat a lot of food still, diet is whole foods no artificial sugar, small meat portions. I also noted that coffee had the same effects as gluten on me and I had to quit that as well. I found my energy returning my enjoyment of life, I can think clearer, my mood stabilized. My symptoms completely resolved after 6 mos. I relapsed when summer hit (hard to avoid BBQ hotdogs and hamburgers without buns). All my symptoms returned I’m getting back on the wagon and staying on. I never want to feel this again. Just had paleo thanks giving. Avoided the beer so I could stay awake. This article reminded me that celiacs is not a joke it can cause irreparable damage. The sooner the change the better. Thank you for sharing this.

  12. Avatar

    Thank you for this.
    I want to offer a pretty simply suggestion for leaky gut. Slippery elm bark and licorice powder combined (3 to 1 ratio) and made into a paste and taken 3 times a day goes a long way to heal the gut lining. Also aloe very gel.

    Warm and healthy regards,
    Deborah

  13. Avatar

    HI Jordan
    I am about to do start the SCD diet. I was diagnosed 7 years ago with Celiac disease while pregnant with my daughter. I have been adhering to what I thought a pretty strick GF diet only to recently have a colonosscopy results back which say I have about 90% worse damage! Now doing my own research I am devastated to think I have been lead to believe just a GF diet would help me!!! 🙁 I live in New Zealand and feel doctors & nutritionist might not be quiet up to speed!?! Please help!!!

  14. Avatar
    Mrs. Kay Thompson Bailey says:

    No such medical term as leaky gut. Thats where you lose me cobbling such scientific reports does not help either. HATE BOTH LEAKY GUT AND GLUTEN FREE. It is used because its easier to say gluten is vegetable and fruit based so no one is ever truly gluten free. Its used instead of i am allergic to wheat, rye,barley and my case oats. You not only have to watch your food but all skin products with some form of those things it and hair products. No buying cut luncheon meat in stores unless its gf and pre packaged. Alot of people do not understand its an allergy. People that are allergic to nuts have to do the same thing. It doesnt just effect your intestines. Can lead to loss of teeth and major organ damage. If you have been diagnosed with celiac and arent getting this info from your physician find a new doctor. I come from a long line of nurses. I was also one and worked in a lab. I also question every physician I have and read up on medical articles all the time. True scientists and phycisians do use terms like LEAKY GUT!!!!!

    • Avatar

      Thanks so much for sharing your perspective. Celiac disease is a real health concern – and you’re right that those with a true allergy to gluten have to be extremely careful in what they eat!

      However, leaky gut is a term used by real doctors (you might also hear them say intestinal permeability) and it is directly related to many autoimmune diseases (like Celiac). We encourage you to attend one of our free webinars of leaky gut to learn more.

  15. Avatar

    Hi my 5 year old was diagnosed with Celiac disease last year.. Even though she’s on a strict gluten free diet had CRP levels remain high although her platelet count is now normal/high 360 so the diet must be working. She also hates meat presumably because it’s hard to digest. She will eat well cooked mushy lean mince as encouraged by health care provider. I would love to know if there are any extras or sides high in b12 as she is periodically deficient and becomes anemic. She is also prone to illness and has WBC issues when she is sick. I would appreciate any help/info you have on remedies preventing the severity of colds/flues in young children.

  16. Avatar

    I was diagnosed with celiacs 4 years ago.in 1995 I was diagnosed with acute lymphocytic leukemia fo tourth stage I had a bone marrow transplant I have been in remission since. My brother was diagnosed with celiacs disease in 1993 he was brought to the emergency room for a psychotic episode was having thoughts of killing his daughter. Previous to this visit he was there do to sever fatigue and stomach problems. The doctor who treated him was studying to specialize in celiac disease. Much to everyone’s surprise he was admitted to the hospital for being severely malnourished due to celiac disease….the gas that accumulate in the gut dispersed his brain causing the disillusion he was going through. Well my brother was my bone marrow doner doctor said celiac disease could not be transmitted through bone marrow. We still don’t know if that is a fact.I have had symptoms of celiac disease shortly after transplant well they also similar to how you would be feeling post transplant any way. I always have suffered from chronic pain almost always severe. For ten years had diarrhea so badly had to use liners on my bed so at night while sleeping I wouldn’t soil the bed. Doctors always related it to my cancer treatment. I was diagnosed by my current APRN who believed that I might have got celiac disease through transplant or genetics. The surgeon beforming an endoscopy of my small intestine asked me my parents nationality told him Poland and Sweden he said I had celiac disease most likely it was genetic. He said I had no fillia in my small intestine at all and I was the first patient he had ever seen in 25 years he practiced as a GI surgeon.My story is much too long to continue. My faith in medicine practices in the USA is non existing and even less in pharmaceutical companies. The article and personal struggles told makes me feel not alone.Sonia

  17. Avatar

    I was diagnosed with celiac disease 5 years ago. I do not suffer with any of the symptoms. If I remember correctly I was only at “level 1”. Do I need to check it out even if I feel fine?

    • Avatar

      Hi Shelley, thanks for reaching out! It would be a good idea to see what is going on, even you feel Ok at this point. You might think you feel OK but experience a whole new level of energy when you address the diagnosis.

  18. Avatar

    i have celiac disease diagnosed 4 years ago. I have gas attacks at times and reflux even if I am careful. If I eat gluten by accident the gas & reflux is worse. Some of the more common gas comes from my divaticulosis. The doctor prescribed omeprazole 20 mg before my main meal. Sometimes I need to take one in the morning and one at night.
    What do suggest I take when getting an celiac attack after eating something wth hidden gluten? Is there an experimental program I could take part in?

    Thanks, Rick

    • Avatar

      HI Rick, thanks for reaching out! The most important thing here is to get on the SCD diet or something similar so you can begin the healing process. It is also a good idea to work w a practitioner for this condition and a supplement program. Next, digestive enzymes can help the effects of consuming gluten, but this is not going to allow you to get to the root of the issue and heal the gut. If you need a place to start, please go here: http://scdlifestyle.com/scd-quick-start-guide/

  19. Avatar

    Hi,
    looking for some advise please.
    I started Atkins diet 6 months ago aiming to loose weight.
    I lost 10 kg eating very low carb diet and felt great.
    After I reached my weight goal I started back on a fairly normal diet.
    Within 2 weeks I had this upper L sided abdo pain. I saw GP and prescribed nexium and arranged a gastroscope. I have had previous gastritis and GERD problems.
    Gastroscope showed chronic gastritis with lymphocytic infiltration in stomach.
    I have noticed some consistent reactions to bread, within 2 hrs after eating bread I’m bloated, gas, L sided abdo pain, irritable and tired.
    I have tried gluten free for 5 weeks and managed to wean myself off nexium. Still have a bit of pain but not severe.
    I ate bread over the last few days again and after a few days similar reactions, tired, bloated, bad pain and irritable.
    The gastroscope was negative for celiac, ultrasound normal, bloods normal, tumor markers negative and xray normal.
    I have read that this type of gastritis is often associated with celiacs . I also have two family memebers with celiacs.
    My GP has referred me to a surgeon. I’m at a loss what to do.

    • Avatar

      Hi Louise, thanks for reaching out! It sounds like you are having a reaction, and most people do, to allergenic foods such as wheat and gluten. We highly suggest adjusting your diet to eliminate all the top allergenic foods and we are confident you will see much improvement with your symptoms. For more information, please start with our Gut health quiz here: solvingleakygut.com

    • Avatar

      HI Maria, thanks for reaching out. Once your gut has healed, you may be able to deviate a small amount, but this is something you are going to have to test out on your own. Ideally, you will continue to eat from the your safe food zone to continue on the path of health.

  20. Avatar
    Rhiannon Wootres says:

    This article is very strongly worded and has moved me to a terror I don’t often feel. I’m sure intentions are good, but fear mongering is the last thing celiacs need right now. I hear what you are saying. I agree, and I have some thoughts on what might help us get better, but right now all I can do is think abut how completely terrified I am.

    • Avatar

      Rhiannon, it has just been suggested that I may have Celiac Disease. I get a biopsy next week. After having a reaction to soy sauce, which I didn’t know had wheat in it, I decided to look-up Celiac so I could avoid those foods. I became terrified reading this article. This guy offers no new diet … it’s basically the same as a GF diet but presents “studies” which say we’re 77% more likely to develop cancer and to die before we’re old? Really? How is this at all helpful. I’m a little afraid, but really mad, too. I’m sure this guy has slanted results to sell his book.

  21. Avatar

    What I find most frustrating is the fact that gluten is in everything. Literally. Lip balms, toothpastes, mouthwashes, hair products, ketchup, salad dressings, soy sauce, brown sauce, OTC drugs and prescription drugs.

    The second most frustrating things is the reality that while people who are not going through the hell of DH/Dermatitis Herpetiformis or Celiac, they scream at you, go gluten free as if it is a cure all that occurs for everyone without fail and overnight. Ugh!!!!!

  22. Avatar

    I completely disagree with the title you choose for your article. I believe it is extremely misleading.
    I think everyone in doubt should contact a doctor instead of reading this. You are actually scaring people by saying that we are going to die sooner. Please double check research on cancer! And ask physicians!
    Still… I would like to say that no matter you heal faster or more slowly, you HAVE to follow the diet!

  23. Avatar

    Finding your site today and reading just two of your articles has literally reduced me to tears of fear. I thought that I was doing all that I possibly could by following a gluten-free diet so I have been ignoring increasingly worsening symptoms that I now know are due to vitamin deficiencies and inflammation. My celiac disease and resulting symptoms are so bad that I can barely get though the day. Life is just a matter of existing. I am paralyzed by hopelessness at the overwhelming amount of information on this site. I can’t calm down enough to take it all in without crying because I don’t know where to start. I can’t just go out right now and BUY books BUY food BUY my life back. Your information has opened my eyes but it’s also an overload.

    • Avatar

      Hi Jessica,
      I relate to your comment. Right now you still are on the G-F diet but you are also doing something else? I’m kind of new at celiac and not sure I am clear about it all.
      Thank you,
      Frank

  24. Avatar

    Hi guys,

    Excited to learn and discover more about your website. Stomach issues started about 2 months ago after drinking a glass of chimichurri sauce and schriracha hot sauce on a dare (I know, stupid, but I can’t change that decision now unfortunately). Anyway, colonoscopy, endoscopy, and 2 blood tests later, results have come back negative for crohns , colitis, diverticulitis, and celiac. However, the small intestine biopsy showed flattened villi, and inflammation in the stomach and duodenum. But the blood test results from a month before and immediately following the biopsy came back negative for celiac. Currently on a ppi (dexilant) of which I have 6 days worth left. After that, I would like to try going scd and natural remedies, l glutamine, slippery elm powder, probiotics, and aloe vera. The dr. says I did a number on my stomach and it’s going to take time to heal, but he doesn’t think it’s celiac. I guess my question is, given the sudden onset of symptoms after my ingenious idea to accept that bet, could it truly just be major stomach damage and not celiacs? I’m exhibiting signs like trouble breaking down foods, trouble regaining the weight that I lost when the stomach problems were really bad a couple times, bloating after eating, along with the flattened villi. Has anyone else ever had issues like this without celiac eventually being the root cause? If so, how did you fix it/heal, and how long did it take? And if so, would the scd diet and book applt to and also help my situation? Thanks for your help.

    – George (33 yrs old….as of today…all I want for my birthday is no more stomach problems….please help)

  25. Avatar

    Just starting to get into an scd. Been having stomach probs for 2 months. Started around the time I took a bet to drink a glass of chimichurri sauce mixed with 2 shot glasses or more of schriracha hot sauce (I know, not smart. Won some money at the time, but definitely lost in the long term.) Tests were negative for crohns, colitis, diverticulitis, and celiac. Small intestine biopsy presented as celiac disease, patches of flattened villi. But blood tests came back negative for celiac. Just curious if anyone else has had or seen issues like that. Negative for celiac, but showing similar symptoms….inflammation of digestive system and flattened villi. If so, what did it end up being, how did you heal it, and how long did it take? I have 6 days of a ppi (dexilant) left. After that, going to try and rely on scd and natural products such as slippery elm, l glutamine, and aloe vera. Along with probiotics, healthy eating, and weight lifting. Any input would be much appreciated. Thank you.

  26. Avatar

    Jordan Reasoner,

    Accidently found and been reading your article about Celiac Disease and SCD. Also read comments by others. I was diagnosed with Celiac Disease in 2013 by biopsy that I requested. I have dealt with so many of the symptoms over 60 years of my life that I could write a book. Is it possible that you could email me some information of how to keep your digestive system intact with CD besides a gluten-free diet? What blood tests should be monitored closely and last information about the SCD diet? I saw you had a site for this which I will start reading. The email that I’m requesting is a condensed form that I may copy and take with me to my primary doctor so we can work together.

    Thank you, Cathy Saxton

  27. Avatar

    I was diagnosed with Celiac Disease and Gluten Ataxia at the same time. Fortunately my Gastro (Dr Scot Lewey), is a brilliant Celiac doctor and had me on not only a GF diet, but also high strength prescription probiotics, some anti-inflammatory meds and another medication to help me digest food better.
    I was interview for an article coming out in March for Living Without magazine about my story.
    I never had gut symptoms. It looked like I probably had MS.
    I will be taking pro-biotics forever. I eat eat nutrient dense, lots of healthy fats, organic and unprocessed diet. No dairy or sugar. Food is medicine.
    My life is almost normal. However there are still episodes that are typically caused my hidden gluten….it happens to even the most vigilant. My gluten ataxia episodes last three to six weeks. They include walking difficulties (I have to use a walker, cane or wheelchair), cognitive problems including significant memory issues, extreme fatigue and increased neuropathies. Loads of fun!
    I was bed-bound most of 2008 before diagnosis. Today (2014) I can work-out for over an hour a day. I still struggle with brain issues, but am being proactive in trying to overcome that. “Grain Brain” book seems to have some key insights in this area.
    Thanks for this site!

  28. Avatar

    The best advice I can give is to stay away from 1. gluten (obviously) 2. food additive/emulsifier carrageenan (made from seaweed) and seaweed containing products 3. MSG/MAG #2 and #3 trigger gluten-like symptoms for me and many celiac folks. I am fortunate in that I have no other food issues – can eat oats that are clean from field to factory, corn, soy, etc. My only real problems are eating out where I will occasionally get contaminated. You have to be ever vigilant as I made the mistake at this always reliable restaurant of ordering something with cashews – that often are packaged in a factory and/or on equipment that processes wheat. Big mistake – two years since my diagnosis I should have known better.

    I have helped numerous fellow celiac patients by telling them to eliminate foods with carrageenan…one person said “look these candies made me sick, but there is no wheat or gluten on the label” but the hard coating had carrageenan! Any celiac who has not healed needs to avoid carrageenan at all costs and try a good elimination diet, and many are now recommending FODMAPs elimination – these certain sugars and substances in even natural foods like fruit that many GI diagnosed patients have an issue with in terms of causing GI inflammation that may prevent healing.

  29. Avatar

    My Celiac caused me so many issues, I couldn’t hardly eat a thing without becoming violently ill because my leaky gut was so bad, eggs being the worst culprit!
    Here’s a little brief summary of what I did to heal my leaky gut, and get my inflammation under control! This might not work for you, but it’s what help me regain my health and not feel like my Guts were on fire!
    I started making Homemade bone broth in a crockpot using grass fed beef marrow bones, looked like brown Jello when each batch was finished!
    I stopped ALL grains including rice, and also eliminated all nuts. Went to a local farmer and bought grass fed beef! The only Dairy I kept in my Diet was FAGE plain Greek yogurt and aged cheddar cheese
    My typical day of eating went something like this

    Morning : 1 cup of bone broth
    1 pound of grass Fed Beef
    1 Cup Of FAGE Plain Greek Yogurt with Really Raw honey
    1 Organic Banana

    I would typically eat this meal 3 times a day, sometimes cooking the Beef in Keary Gold unsalted butter, and use Pink Himalayan Salt on the burgers!
    At times I would change it up and replace beef with Free range chicken, and add strawberries and blueberries to my Fruit bowl with the FAGE yogurt and Really Raw Honey! Also took 40,000 units of Serrapeptase 3 times a Day to help with the inflammation. Never eat any veggies as they cause me
    Inflammation. HUGE turn around in my health, and surprisingly go to the restroom with ease eating 3 pounds of red meat a day! Make sure and drink lots of bone broth to heal your permeated intestines! Really hope this helps someone that is suffering like I was!

  30. Avatar

    Great website and thanks. My son has continued to be very sick on a gf diet. He was diagnosed w celiac disease two years ago and he’s been sicker and sicker-vomiting frequently- multiple times per day sometimes. we’re digging into lots of possibilities, (have had a round of antibiotics for possible sibo, are doing an mri, etc., etc.). At this point, he’s off all grains, legumes, dairy. Getting close to paleo- the most recent info I’ve found which might be giving him a positive change is removing carrengeenan ( http://www.crohns-sanity.org/forum/index.php?topic=12836.0 ) and trying Dr fasano’s gluten contamination elimination diet. ( http://www.biomedcentral.com/content/pdf/1471-230X-13-40.pdf ). Hope this info might help folks in a similar situation!

  31. Avatar

    In the study reference in the beginning of the article about higher cancer rates, I think an important fact was omitted from the referenced study titled, “Malignancy in celiac disease–effect of a gluten free diet.”

    According to the study,

    “The results indicate that for celiac patients who have taken a GFD for five years or more the risk of developing cancer over all sites is not increased when compared with the general population”

    GREAT NEWS – SHOULDN’T THIS BE PROMOTED JUST AS HEAVILY?

    Also the alarms that celiac are slowly dying might be over exaggerated since the other study
    (Small-Intestinal Histopathology and Mortality Risk in Celiac Disease) clearly states,

    “In this population-based study, we examined risk of death in celiac disease…. absolute excess mortality risk was small, especially in children…. “

    It goes on to say,

    “It is also likely that individuals with diagnoses before generally available autoantibody screening were more often symptomatic and had high disease activity and, consequently, a higher mortality rate”

    “…After the first year of follow-up, HRs decreased and were 1.26 for celiac disease, 1.41 for inflammation, and 1.27 for latent celiac disease.”

    AND FURTHER,

    “In conclusion, we found increased HRs for death in individuals with biopsy-verified celiac disease, inflammation, and latent celiac disease, although absolute risks were “small”. Individuals undergoing small-intestinal biopsy in childhood had increased HRs for death. Cardiovascular disease and malignancy were the main causes of death in celiac disease.…. We cannot rule out that preexisting disease contributed to the overall increased risk of death.“

    I get the point of the article but I feel that these facts should have been included which would have presented things in a much more balanced, less stressful way. I understand from a Marketing perspective that dramatic headlines tend to focus people’s attention, allowing the marketer to guide & direct their attention more easily but we’re here because we like what you’re doing and enjoy great helpful content. No need to break out the “big monsters” on us. Just present the facts as facts. We’ll still buy your books and support your efforts.

    I’m not trying to offend you in any way. I like what you’re doing sincerely. Just trying to raise consciousness on this point in hopes that we can keep it all really real and balanced.

  32. Avatar

    Jordan & Stephen,

    I was diagnosed with celiacs disease almost two years ago now. I did not immediately start a gluten free diet because I thought there’s know way this disease is what’s causing my stomach bloating so severe it’s hard to breathe. The disease almost sounds like a joke, well I’ve found out this disease is no laughing matter! After roughly 25-emergency room visits last year I’ve been on a gluten free diet, although very difficult to me I’ve seen a dietician learned a thing or two and have managed to do it. I still feel horrible my stomach is bloated 24/7 I have a hard time just getting it through the night. I have a wife & son now and stresses of everyday life like anyone else but I’m having a hard time functioning making it through the night getting sleep to function at work the next day. It’s because all night my stomach is bloated I burp so much all night I can’t breathe well my legs tingle my everything hurts I heart stomach all night! I stumbled across your website by typing in google can celiacs disease kill you? Well I’ve learned it most certainly can or can increase your chancing of getting something else that will. I’m just having a rough time making it through the night and any advice or thoughts would be appreciated. This is my first time ever posting anything online but here I am 3am again and just feel like I’m going to death like my stomach will explode. The sounds and pain felt from my stomach is so severe. I’ve seen my Gi doc over and over had three biopsys and one colonoscopy and no help except telling me over and over again I have celiacs.

    Zac

  33. Avatar

    amber don’t get caught up in worrying. get on gf diet ,then follow up with other diets to find a good one. read the book of john and follow it to the t. i have cd and do good most of the time. but have the poops for 2 mnts now. the doc gives me domperodome or some crap, i didn’t want ot take it as it speeds up the guts , went from a goose to a water hose, no immodium would work. i quit that crap and eat at evening, maybe 2 apples during the day, slowly getting better. thanks for all who contribute to the good info here.

  34. Avatar

    Thank you so much for this article. My wife has been battling for a very long time and I don’t think most people realize how sick and encumbered being gluten intolerant can make a person. She’s quite fatigued most days and though she avoids G like the plague, it seems like there an extremely high incident of cross contamination or other food irritants in play. I won’t just ramble on here…what is the fix? Will a cleans/detox aid in any way? Thanks in advance!

  35. Avatar

    Thank you for this article, my mother died with celiac disease when i was a teenager and i have always had so many questions about why she didn’t get better when she followed the diet meticulously, this brings closure for me.

  36. Avatar

    I am not sure if I have celiac or not but, the more I read the more I am convinced.i have always had terrible heartburn, and always get really sick. I have had pancreatitis and I dont drink, the drs could not understand why I had it, and how I survived it. I was in icu for 2 weeks.Thankfully I lived that was in 2006, since then my digestive system has been out of wack. I have type 2 diabetes,joint pain, heartburn, diarrhea all day long, I look like I am 9 months pregnant after I eat, I get numb all over my body, I just feell generally unwell. I had a colonoscopy done about z month ago, they say everything looks good and cant figure out what is wrong with me.i also developed asthma last year and have not been able to breathe right since. However, I went to er about 3 weeks ago cause I had a flare up as I like to call it the dr told me to stay off starches so I did because my fasting blood sugar was 223, just until they could figure out whats going on with me. Low and behold 2 daysc later I felt better than I have in 10 years. I ate a sandwich and felt terrible instantly, throat completely constricted.so I began the process of elimination with food.noticed gluten has played a part in all my problems, needless to say I have been gf for 2 weeks now and wow what a hard diet when u r of Italian descent. The only thing is I dont have common celiac problems like im reading here.i have a hard time losing weight no matter how much diet/exercise I do as well as all the diarrhea I experience, I dont have rashes but my skin is itchy. So judging by my symptoms is it possible that I have celiac. Drs have not mentioned it at all. All they keep doing is trying to kill me off with steroids and antibiotics that I refuse to take and never fill. I know there is something that they are missing and I think I have stumbled upon it, however this is me self diagnosing. I have found this blog completely interesting and quite an information overload. But I would love any input on why I am only 36 and feellike I am 76. Also today I ate popeyes red beans and rice and got totally sick instantly does it contain wheat?

  37. Avatar

    Okay – I am very interested in what you have to say, but I don’t have time to read all these posts and testimonials – can someone tell me just straight forward what I need to do besides eat gluten free?

    Is there a menu – list of foods? A book? I”ll buy the book, but I need to know what to buy…

    Sadly,
    Susan

  38. Avatar

    Thanks so much for posting this information! I have celiac disease, and the gluten free diet helped slightly, but i continued to become sicker and weaker and so sluggish mentally. The first time I read this article, I thought it sounded a bit crazy. But as I became intolerant to more and more things, I began to search for the underlying cause out of desperation. Everything I read here made so much sense. I ordered Breaking the Vicious Cycle, and began the diet. What a difference it has made!!
    My 8-yr old daughter has been very sick as well. She suffered with nausea and vomiting with fatigue, and the specialists couldn’t seem to find any answers. The symptoms, to me, fit reflux in children exactly. So I put her on the diet as well, and since the second day she has been back to normal. It such a blessing to see her running and playing instead of sleeping and vomiting.
    I have a question for you as we’ll, if you don’t mind. I have been having some symptoms return (none to the same degree as before the diet), and I’m certain the cause is fructose. Honey, especially, causes immediate trouble. But I feel like I need to eat fruit at least, to keep the scd from becoming a low carb diet. Should I eliminate it for a while for the sake of healing? What do you recommend?
    Thank you again for your help. I’m sure you can imagine the great blessing your sharing this information has been to me! It was truly an answer to prayer.

    • Steven Wright

      @Mindy – We are big believers in 2 things. 1. listen to your body and 2. Proper Testing . I think if a food is causing you pain it’s best to cut it out. And follow up with some advanced GI testing to get a better understanding of any root causes that are causing your issues.

  39. Avatar

    How sad 🙁 its been two years since I was diagnosed…two years of constant stomach pain, horribly itchy rashes, nausea, lethargy…I’m sure you know how it is…I am only 20 and it’s just so hard to stay away from the foods I used to eat everyday. Sometimes my stomach feels like its rotting from within T-T my fiancé doesn’t have celiac so it’s hard for him to understand how terrible I truly feel sometimes because of it. I am so scared because I want to have children and live a long life for them but now, I’m not sure if I will even make it that far…

  40. Avatar

    Hi Jordan, I just came across your article after seeing a link posted on Facebook. I think you did a great job summarizing the luck of mucosal healing for celiacs despite being on the gluten free diet. I have been following an (almost) Paleo diet the past few months and have overall been feeling great, except for a few times when I’ve been exposed to carrageenan. I’ve found that it causes me tremendous GI upset followed by joint pains and lethargy. Do you have any information about carrageenan? Do you recommend avoiding it? (I am guessing that the answer is yes, as I cannot see any sources of carrageenan in your recommended diet). I am trying to get the word out because I feel that those of us who are Celiac should not be consuming this additive. Thank you! Jess (The Patient Celiac)

  41. Avatar

    Hi Jordan!

    I am so happy to have found this article becuase it takes the words right out of my mouth. I have been diagnosed with celiac disease, gut dysbiosis and leaky gut. Healing can be quite the process. Thoughout all of my time researching this same info and spreading awareness on my blog, as you have here, I stumbled upon the GAPS Diet. I am so excited to start it in order to heal and seal my gut! You are so great for writting this and for your inspiration.

    XOXOX Fallon

  42. Avatar

    People….it is not the gluten or grains that is causing the problem….it is….the…GMO bacteria in your gut that is creating holes in your intestines and the gluten is getting through…plus, other foods that get through create havoc on your body…so…you need to get the gmo bacteria out of your gut…how? Mutate, mutate like the bugs…find out what foods are gmo and quit eating them…corn, soya, conola, sugar(all sugar in north america, except, organic or cane sugar is all gmo….if it kills the bugs by blowing up their guts…you don’t think it will do the same to you? This gmo bacteria in the plants can not be killed, as far as we know…so..we need to heal the holes in our guts, with, beneficial bacteria food…fermented…also…the gmo bacteria takes over our benifical bacteria cells and then goes to work to do its job…what is the job of this gmo bacteria? To kill whoever eats it…It has a job to do and it does it well…what is gmo bacteria, how is it made? They took a gene from a cell of a bacterium, and put it into the corn, conola, soya, etc…and it became one with the plant…oh, well, what type of bacteria is this? It is one that targets the guts and tears them down…it has a job in nature, tare the weak down…does not die..you can’t cook it to death either.so…stay away from gmo…No one outside of north america are screaming about the gluten…wake up..nobody wants our gmo…why…we are being mass murdered here in North America…so it seems…

  43. Avatar

    I was 17 when a dermatologist diagnosed me with dermatitis herpetaphormis back then they did not know much about celiac and so forth so I was told don’t eat gluten but if I do take dapsone and I won’t break out. Fast forward to the latter half of my 30’s I’m at work and loose the ability to focus my eyes so off to the emergency room and guess what I have a GI bleed! After I get an EGD and blood work I am diagnosed with celiac which now they know you can’t have DH without celiac but for years docs knew I had DH and not one of them ever caught it they never said a word about celiacs! Even when I was pregnant with a hemoglobin of 7 did anyone say hey you might have celiac! I was slowly bleeding from my gut. Even knowing that I am a candidate for cancer of the small bowel I find it hard to stay gluten free it sucks! I also have thyroid disease and read they often find celiacs associated with that.

  44. Avatar

    Celiacs believe the foods that cross the intestinal barrier (gluten++) is the only enemy and they work very well to eliminate it. Yet most do nothing to actually improve the intestinal barrier to stop gluten crossing to the bloodstream. Example: they believe that alcohol if gluten free is harmless. So wrong! The evidence of how alcohol damages intestinal lining is piling.

  45. Avatar

    Thanks, how would celiac affect my pregnancy now? I had a premature child and was about to give an early birth to the second. They are healthy 9 and 7 children now. My first has attention problems and my second was born with poland syndrome. He is extremely smart and not much affected by the problem.
    I had three miscarriages after, usually an empty sack or the baby doesn’t grow from the beginning. Now, I am 33 weeks pregnant. I just found out that I had celiac about two months ago. I started the diet immediately. Just before going on the diet, my blood hcg went as low as 7 and my sugar was only fifty. It was the first time I had such bad results. I started the diet and my doctor prescribed 3 feromin tablets a day. I have just tested yesterday and my hcg has gone up to 10.7 .Will celiac still affect my baby or cause a premature birth? I went to a check up yesterday and my gynecologist commented that my placenta was a little bit going down but it was not sth to worry yet. I reminded her of my history. For my first child, I had no problem whatsoever. I was just sitting down browsing the internet and found blood in my clothes. I went horrified to the hospital and they told me I was having problems with the placenta. I was hospitalized and gave birth three days after. What’s going on? Any comments?

  46. Avatar

    I’m sorry to disagree, but the primal diet was nothing short of disastrous for my health. I think it’s a good diet for men, but as a woman it killed my hormones, sex drive, left me with horrible constipation, and triggered binges like I’ve never had before. While I agree that the gut needs to be healed, eating a diet of animal days and no carbohydrates puts you up for nutritional deficiencies, not to mention social anxiety. After failing at paleo/primal miserably, I eat a balanced diet including gluten free grains and with lots of supplements, including probiotics. I agree thr processed gf products are crap, but saying that nutritious foods are bad for you is an exaggeration.

    • Steven Wright

      @SGRhapsodos – Thanks for sharing your story. We don’t advocate a zero-carb diet unless it’s needed specifically for your medical condition. It sounds like to me that you had some metabolic issues happening before you started a zero-carb diet and that type of eating hurt them even more. Sorry that you had to go through that and I’m happy to hear you’ve found a better health now.

      I completely 100% disagree with you and assert that a grain-free diet is very beneficial and healthy for women and men. And our following and the success stories on this site prove it as they are mostly women. The research at this point is pretty conclusive for a host of reasons the most allergenic foods are grains and processed foods. A properly sourced and eaten SCD/Paleo/Primal diet is much more nutritious than any grain containing diet.

  47. Avatar

    I applaud your effort to spread the word! You are doing a great service!
    I don’t have Celiac but am highly gluten sensitive. I know that now but getting here was a hard and painful road that lasted 12 years. I have been struggling with many health issues, including neurological problems. The past 6 years have been the worst, involving SSRI hell and Benzodiazepines hell, plus weaning off. After seeing 16 different specialists and many test from MRI, EEG, Gastroscopy, Endoscopy to sleep labs, it was through the kind of information that you provide on the internet that I was able to put 2 and 2 together. I started with GF which seemed to help at times but 80% of the time it was back to square one. Finally, after starting Paleo diet I’ve been reborn. Now I spend all my time spreading my finding and am encouraged by people like yourself. Keep up the great work!!!

  48. Avatar

    The research cited provides a lot of useful info on what is happening in the guts of celibacy and what is causing it and can be done to heal. Yes, pharma companies will try to capitalize ooff of celibacy by developing new drugs but I’m not sure what that has to do with us using the info these studies provide to heal through natural means.

    • Steven Wright

      @Kayla – I can’t tell if your being sarcastic but if people would stop using the big pharma drugs when their are other holistic alternatives then they wouldn’t be able to sell them. There is only a market for products in which people buy them. Never forget we all have choice.

  49. Avatar

    Thank you very much for this informative article.

    I received a celiac diagnosis about 1.5 years ago. I also have Dermatitis herpetiformis. Due to my doctor’s lack of knowledge in regards to post antibiotic damage, cross reactions to food and nutrition for celiacs, I was pretty much left on my own to wade through the sea of information online from various naturopaths and Chiropractors whom I have come to greatly respect and admire. I have since turned my back on the modern medical paradigm.
    When I first went gluten free, I did experience the relief of many of my most severe symptoms but as time went on, a deep tissue sickness still resided and I couldn’t figure out why, for the life of me. I was still plagued with disturbing symptoms, such as undigested food in stool, chronic skin inflammation/acne, exhaustion, depression, and an addiction to sugar and gluten- free carbs. I was essentially starving for nutrients and in desperation, tried all the gluten-free food to fill up on calories, which turned out to be just empty calories, creating greater gut imbalance.

    I adopted a high raw food diet of fresh fruit and veggies and STILL the sickness persisted. I was beyond fed up. One day, my friend dyed my hair and I broke out in a horrid rash all over my face and chest. I knew then, I was seriously toxic and my body couldn’t withstand ANY more chemical load on my already overloaded body. I decided to dig and research more into this and a light came on for me. I recalled how I had broken out in oral thrush the previous year. I realized I was suffering from fungal candida and the effects of years of antibiotics, really, the real reason for my leaky gut to begin with and …. CELIAC.

    I found this amazing, amazing treatment plan called, ” The McCombs plan, ” and I just finished the four months of treatment. The plan reverses fungal candida back to its’ normal yeast form, boosts the immune system to get rid of it, unloads the body of years and years of toxins through a sweat and water protocol and then reestablishes the intestines with good bacteria. For the FIRST time in my gluten free journey, I feel more well than I have ever felt.

    Dr. McCombs also helped me to understand how fungal candida, leaky gut, and celiac create hydrochloric acid imbalances, too. I’ve started taking HCL supplements and digestive enzymes and for the first time, I don’t feel like I’m starving to death. I’m actually absorbing nutrients.

    Thank you so much for your work in the celiac community and for getting the truth out there.

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    My 9 year old daughter was diagnosed with Celiac about a year ago. I had been complaining to the doctor that she had been slowly but steadily falling down the growth chart since age 4. It took 4 years for the doctor to get convinced when she had fallen from 80th percentile on growth chart to 5th percentile over the course of four years. She has been on a gluten-free diet for 9 months now but still hovering around 5th percentile. she only gained 3 lbs and 2 inches in this 9 month period. She will be 10 in October and is only 49.5 inches and 52 lbs. I am really worried about her growth. At what point should one start wondering if she needs some growth hormones as well since the gluten free diet is not working.

    Anyone with children in similar age group can help with sharing their story.

    Thanks

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    Jordan, Thanks so much for taking the time to help us all here. I really appreciate the information. Please allow me to share my story and dilemma.
    After 10 years of being strictly gf, I have been questioning if I could possibly have Refractory Celiac
    Disease. It has been proven I am indeed GF for ten years now, but still am in
    bathroom 20x a day with either bright yellow or bloody d. I was diagnosed with
    crohns too, but the new dr. disagrees with both diagnosis and isnt sure what Ive
    got. He thinks because Im overweight I cant have either. This is what a decade
    of steroids does! So I am getting another opinion. I have been bounced from
    dr.to dr. for about 2 decades now. The flare ups are coming closer and more
    intense. I go in to the er for i.v.s dilaudid,script for hydrocodone. The bentyl
    and lomotils dont work at all. Soon as Im out of hydrocodone,within a few days its
    another bad flare up. The pain is in the center of my stomach a little to the
    right. Gallbladders out,intermittent pancreatitis and enlarged liver and spleen.
    In 05,abnormal mucosal patterns with scalloped appearance in jejunum were found
    with lesions, multiple erosions in body and antrum of stomach, always blood in
    stool and trace in urine.A few years ago I went through weekly iron infusions for 4 months when I was 1/10 of a point from needing a blood transfusion. Now from all the steroids,Ive got diabetes.I have had capsule endoscopies that go through too fast or get stuck, other tests and gotten scolded for having to go to the bathroom during the test,as soon as the anesthesia wears off Im in the bathroom with diarrhea again. Im up
    before 6 in the bathroom and sometimes it wakes me up between 1 and 6 as well.
    Its been so long and so frustrating. Ive also got panniculitis which accompanies
    crohns,on my legs and now neck.I feel like theres inflammation and it is constantly relocating. Now, Im back to food allergies again. According to the allergy testing though I have no allergies.( Yet, I do have hives and anaphlyactic reactions) after having a latex reaction last week while getting blood work. I have stayed away from it,all drs and hospitals I’ve been going to are all latex free, but not the neurologist office. The next week Ive been getting red dots and blisters around mouth after tomatoes. Last month it was hives from berries. Im anaphlyactic to shellfish and melons and latex too,especially airborne. If anyone has any suggestions, please send them
    to me.It has been so hard on my 6 kids and husband and has affected him keeping jobs too. This is so disruptive and frustrating. Ive also had entocort for a year,have gone without eating for 2 weeks, several times in attempt to clean out my system
    and still nothing different. I have learned a lot from this article and will try the scd again and for a longer period this time. I have tried it in the past. I guess, since it has taken so long to get to this point, it will take a long time to get out of it.Thank you. Lynne

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    I think many people don’t heal because they may be eating contaminated foods. I have spoken to a few celiacs, myself included that cannot tolerate Gluten Free Oats. If you’re eating this type of thing everyday, try eliminating it. Also processed foods that are not certified GF are risky. (for example, the pre shredded cheeses have an anticaking powder, that could have anything in it.) The more vigilant you are, the better your chances for recovery. Good quality vitamin supplements are also important. I noticed a HUGE difference once I cut out the oats…and that means a lot of gluten free snacks with oats are off limits. Eat whole , real foods, with an identifiable source.

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    This is all very interesting to learn. I was diagnosed about five years ago with celiac, and did “fairly” well with the diet, however still had a lot of symptoms. In the last 2 yrs. I have not stuck to being gluten free at all and just eat what I want, so now I am feeling even worse! Does anyone else have a hard time sticking to all gluten free foods, I am a picky eater as it is, and any loaf of GF bread I have tried is terrible (like eating a kitchen sponge). I was also wondering, now that I have moved to Memphis, I need a Doctor. What is the best way to find one that knows about celiacs? I have not been seen in over 3 yrs. with no insurance, Thanks!!!

    • Steven Wright

      @Andrea – Sounds like you need to follow the exact program that Jordan did. Our SCD Lifestyle program. We’ve had many celiacs with the same story as yourself see amazing returns of health doing it. If your serious about your health you’ll make the decision to change your eating habits. It’s a value problem not a taste problem.

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    WOW, that just sent me spiraling into depression. Do you really have to phrase it that way? If we’re going to go down that road, then everyone on earth is dying slowly each day in his or her own way. Why are you focusing on this without any alternative solutions currently available? What is the point of writing such an overtly negative piece? Have you read studies about how negativity kills, too? GEESH!

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    gorettia knight says:

    Thanks for the information on this site. I knew something wasn’t right when I had been eating gluten free (very strict on diet…) and the test my doctor did still showed high positive results. And still after eating gluten free (still very strict) I have many unexplained symptoms that keep popping up. After reading your information, I better understand why…so I will PRAY more and let God take care of me (His temple).
    I appreciate getting this information. I was beginning to wonder if this was just all “in my head”.

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    It’s been a few months since I left my comment above and well, it looks like I haven’t received a reply. Sorry for being persistent on this matter, but I felt the need to comment again. You cited a study as supportive that in celiac disease patients following a typical gluten free diet for 10 years, 56% still showed signs of poor nutrient uptake due to their digestive system not working like it’s designed to. Let state in no uncertain terms that I think you are misinterpreting this study.

    First of all, 56% of the subjects were deficient in one or both of only two vitamins; folate and vitamin B6. As can be clearly ascertained from reading the study, the folate deficiency was most likely due to a low dietary intake, not impaired absorption. I think this study offers clues, but fails to offer conclusive proof as to why 37% of patients had low blood levels of pyridoxal 5′-phosphate. In my previous comment I presented an alternative explanation for this.

    Again, the researchers said this of the study: “our findings can hardly be explained by persistent intestinal malabsorption”. It’s perfectly fine to disagree with them, but you’re going to need to present some more convincing evidence to support your interpretation.

    This post was otherwise very good, but this issue is important and I felt the need to stress for accurate representation of the scientific literature.

    • Jordan Reasoner
      Jordan Reasoner says:

      Mscott – thank you pinging me on this again, I appreciate that. You bring up a great point and I welcome that, it helps to collectively make this information better for everyone, so thank you for adding to the conversation.

      I agree, it could be as simple as the lower average daily intake of folate on a GF Diet. I think the fallacy of my series has been that I approached it from a lens that GF was a lesser choice of diet as compared to a paleo/primal diet of whole foods, which has been shown to contain 891 µg (or 223% of the RDA) of folate (see page 14 for Dr. Cordain’s paper: http://www.ana-jana.org/Journal/journals/ACF5FB7.pdf). So from that perspective, the collective argument of the series is congruent with your statement as well.

      Obviously, the way this specific study by Spectracell was conducted could lead to many plausible mechanisms, and it’s definitely not causality, so your point is quite valid. And I’ll admit, the context I framed this point was likely too far toward causality, so I appreciate your feedback in that way.

      I think where we can probably agree, is that the GF Diet isn’t the best diet choice for a Celiac, and there’s better choices out there for recovery, and life-long health. Do you agree?

      I look forward to your response and thanks again,

      Jordan

      • Avatar

        Jordan- I absolutely agree. Treating celiac disease with a gluten free diet alone is like treating a stab wound by simply making sure the knife isn’t still in the wound. This is among many things we probably agree on.

        Your site is awesome and my small contentions don’t take away from the fact that I think your work as a whole is really important and helpful to a lot of people. I appreciate the response.

        -Morgan

      • Avatar

        Re: folate – I recently learned about the MTHFR genetic mutation and how it interferes with absorption of folic acid and B12. Many of us have at least one copy of this abnormality and for us, the folic acid that is added to foods and supplements does not work and may even interfere with folate status!

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    When will you tell the “rest of the story”? I know it is in the SCD, but is that enough? I just found your blog this morning and I am reading and reading and reading. Great stuff!!! Please share the answers soon!!!! Thanks. My celiac symptoms were mostly not digestive. I had burning muscle pain, a diagnosis of fibromyalgia, migranes, other headaches, anxiety, a crazy fluctuating TSH (thyroid removed 22 years ago after 13 years of hyperthyroidism, I was 23 when it was removed), skin rashes (still a little bit of that), and it seemed like a different pain everyday. That all went away when I cut the gluten. My daughter has Hashimotos, JRA, and celiac. We are grain free and the only dairy in our lives in cheddar cheese (Yeah SCD approved). I so desperately want to do everything I can for my daughter to make sure she lives a long, healthy life. I want one too!!! I have been researching and reading for a little over a year now.I am info junkie in this area and I can’t wait to see what else you have to share. I am ordering your stuff! Thanks for the hard work and your desire to share.

    • Jordan Reasoner
      Jordan Reasoner says:

      Great to meet you Debbie 🙂

      Congrats on all the work you’ve already done to take control of your health AND your daughters!

      I can relate to what you’re saying and it sounds really similar to what happened to my Mom all those years ago. I’m working on the next part of the series right now, I’m thinking there’s going to be four more all together so stay tuned. I look forward to your feedback!

      In good health,

      Jordan

    • Avatar

      Thank u JordanN u r a wealth of gr8 info. I diagnosed celiac @ 47yrs old, in my gene testing too. Do u have any info on the neuro problems associated w celiac..as I had the gluten ataxia and some ireparable cognitive issues and muscular 2 resulted.3yrs GF, still inflamation, have leaky gut, had liver tumor, osteopenia, advanced endometriosis, possible MS. Thk u and God bless u!

    • Jordan Reasoner
      Jordan Reasoner says:

      That’s a great point Stephanie – It’s really too bad. The research shows that even a tiny amount will trigger some degree of inflammation and opening of the tight junctions… and even activate an immune response for up to six months.

      The hard part with these studies is also related to the reporting of the participants and whether or not they cheated or not, as that would affect the results. But it’s a starting place for us to make some hypothesis.

      Jordan

      • Avatar

        This was my question too. I had been told that ‘gluten free’ standards in the US were a lot lower than here in Australia – it’s 2 ppm here to be allowed a gluten free label. Do you know of any studies conducted on Australian or other nations that adhere to this standard?

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    Regarding the study you cited as proof that in half of celiacs “their digestive system still isn’t working like it’s designed to” after 10 years gluten free; looking at that study it appeared that 56% indeed either had poor levels of vitamin B6, folate, or both. However, all the celiac patients had an averaged daily intake of folate of about 184 micrograms per day, lower than controls and well below the NIH’s recommended daily intake of 400 micrograms. This is a clear explanation as to the low folate status in 20% of the celiacs. I’m less sure about the other 37% with low B6, but given the low folate intake overall, one possible explanation for that could be that B6 levels were lower because, in the absence of folate, B6 was used more readily to detoxify homocysteine, given that both nutrients can serve that purpose.

    The authors of the study in question themselves said “our findings can hardly be explained by persistent intestinal malabsorption”. I guess I’m wondering whether that study actually supports your statement that “proper nutrient uptake is not occurring” in the 56% or that they just weren’t eating enough folate rich foods.

  59. Avatar

    Mike, that’s really interesting. I’m starting to realize that meat, turkey bacon, fried (not scrambled) eggs, berries, avocados, soups, and maybe a little white rice are the gentlest on my stomach. But how will I get proper nutrition if I’m eating meat and white rice all the time and very little vegetables? How do you all feel about longer-term fasts? I’ve been considering going on a 7 or 10-day fast from food (under the supervision of a naturopath, if she approves). I’ve heard that fasting can do wonders for illness, and I definitely notice the difference (so much less bloating and inflammation) when I go a day without eating. But I’ve also heard fasting is to not be undertaken by someone who’s feeling weak already.

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    I was diagnosed almost 2 years ago with a biopsy. The original blood tests were inconclusive. The GF diet has actually made me feel worse. I tend to agree with Mike. If I eat seeds, nuts, oranges, grapes, vegetables etc. I cannot get out of the bathroom, most of the above foods come out just as they go in, the bloating is almost worse than the diarrhea. I had a knee replacement in Nov of 2011 and it is still swollen, the Dr.s have no idea why. I think it has something to do with the celiac disease since they have never encountered this problem before. I had diarrhea for over 10 years before they did the biopsy. The Dr. treated me like it was all in my head.

    • Steven Wright
      Steven Wright says:

      @ Mary – You should really give our version of the SCD diet a try. It’s same protocol with a few updates that turned Jordan’s health around when it was failing due to the Celiac Disease. Give it a try for 30 days you won’t regret it!

    • Avatar

      Before i was diagnosed with Celiac Disease, my doctor diagnosed me with everything under the sun. From a eating disorder, to anxiety, depression, ulcers, bleeding ulcers, IBS, and psychosis!! FINALLY, i figured out why my Great-Aunt was on chemotherapy, yep….. Celiac Disease! i learned from my experience, that doctors are human, and they don’t know all they think they do!! Good to hear , that i wasn’t the only one that was told i was “crazy”!!! ((:

    • Avatar

      Mary, I had exactly the same problem — gut issues got worse when I went GF 3 years ago! Just about everything put me in the bathroom, but especially other grains, veggies, even rice noodles! About 8 mos. ago I got on a “zero carb” (meat, eggs, cheese, etc.) and have never felt better! If I stray from this way of eating, I pay for it! I also lost the few pounds that I couldn’t get rid of.

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    I look forward to the remaining four parts of the series, Jordan.

    I don’t necessarily agree that soluble fiber is THAT much better than insoluble fiber, particularly if you already have a perforated intestinal wall. If you’re looking to heal the intestinal wall, it’s my opinion that all fiber should be avoided during this process, and maybe even in perpetuity.

    Another component of intestinal healing that often gets overlooked is eating schedule. If you’re constantly eating/grazing small meals all day long as most quack nutritionists advise (“gotta keep a log on that fire!!”, they say), then you won’t provide an opportunity for the intestinal wall to heal, as it never has time to rest. If you have knee surgery, then immediately go out and start playing basketball every day, your knee won’t heal, either. This is why I think most people will get amazing results if they essentially fast during the day, eating only a couple, widely spaced, very small snacks of animal protein and maybe some homemade kefir, and then have a relatively large dinner consisting only of white rice, grass fed bison/beef, and maybe some low fiber fruit. Definitely try to avoid at all costs: nuts, seeds, legumes, vegetables, brown rice, wild rice, and specific high fiber fruits, in addition to the usual gluten foods.

    Takeaways: when you fully avoid irritants, and then provide larger windows of non-eating to allow for healing, the intestinal wall will heal very quickly, and once it’s fully healed, people will find that they have a much better tolerance for foods that once gave them issues when their intestinal walls were perforated (dairy, for example).

    These are my personal results from rigorous and obsessive self experimentation.

  62. Avatar

    I find that most people on a gluten-free diet still consume grain-based gluten-free processed foods. My husband wasn’t diagnosed with Celiacs, but he had all the symptoms. He then did testing through Cyrex Labs (http://www.cyrexlabs.com/CyrexTestsArrays/tabid/136/Default.aspx) who offers testing that checks *all* the forms of Wheat/Gluten Proteome Reactivity as well as Gluten-Associated Cross-Reactive Foods and Food Sensitivity. It was found that he is intolerant of all other proteins associated with gluten/wheat as well as all the foods on the cross-reactive list except yeast. I highly recommend this testing! SCD is working well for us! (Cyrex also does a Gut Permeability test so you can see the progress of your progress of your leaky gut.)

  63. Avatar

    I was diagnosed almost 2 years ago, and have maintained a gluten-free diet as much as I possibly can (always at home, and try my best when eating out-it’s a crap shoot). I have had my inflammatory markers for celiac rechecked after 6 months of going gluten free, and they were all normal. If the blood markers are normal, do you think there is still damage occurring in the gut? Should people continue to have biopsies done to determine if the gut is healing or not? Interested to know-have a GI appt at the end of the week, and would love to discuss this with her, as I still have symptoms. Thank you-

    • Jordan Reasoner
      Jordan Reasoner says:

      Thanks for reading the series Susan. When you say “I have had my inflammatory markers for celiac rechecked after 6 months of going gluten free” do you mean that you had your gluten antibodies checked?

      That’s what I suspect, in which case that just tells you that you’re doing a good job of staying gluten free. Some of the inflammatory markers you’d want to look for would be High sensitivity CRP, you can also look for elevated ferritin (levels over 200) and elevated HDL (look for levels over 90-100). Also, elevated monocytes (above 7) can be another secondary indicator of inflammation.

      Stay tuned for the rest of the series, things are going to get more prescriptive going forward.

      Jordan

  64. Avatar

    Kudos to you, Jordan, for driving home the seriousness of our situation. It is so tempting to say, “I can take a bit of discomfort for an occasional couple of bites of bread or cake.” Your article demonstrates that 1) gluten is simply a no-no, but 2) it is also life-threatening, and therefore beyond a simple or variable approach. While it is tempting to look with sorrow upon the situation, your posts inspire perseverance and a sense of community. I look forward to your next piece in this series.
    Laurie

    • Jordan Reasoner
      Jordan Reasoner says:

      Thank you so much Laurie – I really appreciate your feedback!

      There’s evidence that cheating just once will “turn on” your immune system with antibodies for up to six months, so yes, cheating is a bad idea 🙂

      I’m working hard on the next part already, stay tuned.

      Jordan

      • Avatar

        I do wonder in the studies you mention how many of the subjects are actually 100% gluten-free. Are they just reporting gluten-free but actually cheating at times? I agree that dairy needs to be removed until the villi grow back. It is my understanding that the milk digestion enzyme factories are in the tips of the villi which are missing because of the gluten lesion. Have you ever heard this?

        • Avatar

          Hi Amy – thanks for your comment! Of course, there is no way to know if people in the studies are cheating or not. On top of these studies, however, we have a lot of anecdotal and personal experience in typical “gluten-free” diets not being enough to create lasting health. Many people who react to gluten also react to dairy because the protein casein in dairy is really similar to gluten, based on our research!

          Glad we could connect with you here!

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    This is probably a gross oversimplification of the issue, but in my opinion, it’s not just gluten, it’s all fiber in general. Fiber is a gut irritant, not the friendly “street sweeper” that we’ve been led to believe. So, if you’re replacing gluten with vegetables and fruits that are high in fiber, you’re still going to have an issue with intestinal healing. Eat white rice and grass fed beef/bison like it’s your job, along with some low fiber fruits, and you’ll see much better results.

    • Jordan Reasoner
      Jordan Reasoner says:

      I appreciate your opinion Mike. I do think insoluble fiber can be a gut irritant… but the bigger picture lies in the other problem foods people typically eat on a gluten-free diet, which I’m going to cover in detail over the remaining 4 parts to this series.

      Stay tuned and I look forward to your feedback on the rest of the series.

      Jordan

    • Avatar

      Mike I disagree with you about the fiber issue. I need tons of fiber daily as a celiac or else I get constipated. Fiber is helping me immensely to have normal bm. But I don’t eat too much raw stuff because it does seem to be somewhat irritating. I use the metamucil type–psyllium seed husks.

    • Avatar

      Couldnt agree more! I belive fibre and soya milk and brown breaf got me into celiac which I discvered after bad unexpected anemia. Until after I reduce intake of most veg (even cooked carrots caused sympomos) i could start feeling something was healing.
      Most important tho-celiacs dont listen to their gut but to the ‘healthy info’ out there. Good luck everyone, take it easy, breath properly and be easy on urself.

  66. Avatar

    Thank you so much for this article! I’m looking forward to the next one.

    I went to the Canadian National Celiac conference last May and they talked a bit about Celiac cases that didn’t resolve on gluten-free diets. The most they could explain about it is that some people have other food sensitivities. I hope these doctors start to finally get it that there’s more to Celiac than just wheat.

  67. Avatar

    Jordan~ Thank you for doing these articles. Following the SCD there seems to be so much emphasis on other IBD and I often wonder if there is anything that works to heal celiac disease. I am encouraged by the information that you are presenting. Knowledge is power. I did not know about gluten until 6 years ago, when I diagnosed myself and started a gf diet. (I have since had the biopses that show CD). I followed a strict gf diet for 5 years with no improvement. I started the SCD 10 months ago. Still not having perfect bm, but I do have hope. So thankful for you and all that you are doing to help me and so many others.

    Angela

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    Jordon,
    Thank you for another great post. I’ve been eagerly waiting for this post since I read the first one in your series. I very much appreciate the depth of your research and tying things together for people like me. My own physical symptoms make sense to me. I’ve been gluten free, but based on my working knowledge of Chinese Medicine, I still feel the emotions that go with the small intestine meridian. That did not make senes to me, until I read your blog. Your time, energy and effort is very much appreciated. Thank you and many blessings.
    Pawan
    Pawan

  69. Avatar
    ohyllis byard says:

    Hi Jordan and Steve,
    Thank you so much for bringing this important information to your “public!”
    I think I’m living proof of what you’re saying in this article. I’ve been on GF diet for some time, albeit when I started I wasn’t as serious as I should have been. But, even when strictly following it, I’ve had lots of other symptoms (pain all over – literally and figuratively). My doctor is ahead of the curve in many ways and insists on frequent blood tests to monitor all sorts of things, and also on his patients taking adequate amounts of supplements to ensure that their nutritional needs are being met. Being GF (and being careful of other prolamines) has got me to the point that I’m having perfectly normal bowel movements consistently. He has decided that although my blood work markers have reached very good levels all around (except inflammation markers like CRP and Rheumatoid Factor) that there is a latent infection/inflammation somewhere in my body (not limited to gut) so he has started me on an Azithromycin protocol, some days on and some days off. Been doing that for about 3 weeks now. Can’t really tell what’s the outcome is as yet but have blood test scheduled for June.
    Although it is frustratingly slow, I do feel I’ve made some progress in fighting this condition because at least bowels and several other complaints have definitely improved. So, this gives me hope that with continued perserverance I will be able to beat this beast!
    Thanks for all you do.

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