The Celiac Disease Epidemic: Why Gluten Free Isn’t Enough

The Celiac Disease Epidemic

On June 10th 2005, my mom died from Cancer at the age of 52… and I miss her every single day.

I was devastated.

It tore me apart.

It didn’t make sense.

It wasn’t fair.

How could this happen?

But looking back, the signs leading up to her cancer revealed a pattern:

  • Lifelong “nervous stomach” (diarrhea, gas, and bloating)
  • Fertility problems
  • Graves’ disease
  • Endometriosis
  • Migraines
  • Fatigue
  • Anxiety
  • Depression
  • Frequent illness
  • Gallbladder cancer
  • Bile duct cancer
  • Liver cancer

And my own Celiac Disease diagnosis in 2007 affirmed my suspicions.

Lifelong untreated Celiac Disease killed my mom…

Celiac Disease is an Exploding Epidemic

The latest research estimates 1% of the western population has Celiac Disease (1 in every 133 people)[1] with nearly 3 million people suffering in the United States. That’s A LOT of people… but what’s worse is the University of Chicago Celiac Disease Center estimates 97% of those with Celiac Disease remain undiagnosed.

Is Leaky Gut Making You Sicker?


So why are so many people unaware they have Celiac Disease?

The diagnosis itself can be expensive, time-consuming, and misunderstood. The “gold standard” Celiac diagnosis looks for a positive antibody blood test confirmed by an intestinal biopsy. The biopsy is typically ordered by a Gastroenterologist and gathered in a hospital setting during a procedure called an Endoscopy, costing anywhere from $2,000 – $5,000. For some people, that’s just not an option.

It isn’t necessarily a lack of tests that’s the problem… it’s the lack of doing tests in the first place.

But I’ll get to that in a moment…

I used to think the Celiac Disease epidemic was there all along… that this meteoric rise in the disease was the result of new medical technology and the growing awareness in mainstream media.

But I was wrong… well sort of.

We are getting better at finding it… but recent studies provide solid evidence that a Celiac Disease “explosion” is happening because more people are developing the disease, not just because of better testing. In fact, one study performed at the Mayo Clinic suggests the incidence of Celiac Disease in men has increased 4X since 1948! [2]

If that’s not enough to convince you that there’s a tidal wave of Celiac Disease headed for us, let’s follow the money. Private Industry has taken notice of the rising population of gluten-free dieters (not all of which have Celiac Disease). Look at this data:

Gluten-free foods and beverages, once considered specialty items, had a compound annual growth rate of 30% in the U.S. between 2006 and 2010… $2.64 billion in total sales in 2010. [3]  

New reports estimate it will be a $5.5 Billion market by 2012! [4]

Corporations wouldn’t be pumping millions of dollars into a market if they thought it could shrink or slow down anytime soon. Not only that, but pharmaceutical companies are racing to develop several drug treatments for Celiac Disease.

The worst part of this story isn’t just the growing epidemic…

You Could Have Celiac Disease and Not Even Know It

Celiac Disease is an autoimmune condition of the gastrointestinal system triggered by gluten, the protein found in wheat. When people with Celiac Disease are exposed to Gluten it stimulates the immune system to attack and damage the intestinal lining, waging war against its own intestinal tissue (villi). The challenge with Gluten is that it’s virtually ubiquitous in today’s world, found in just about everything… from cereal to lipstick.

And because Gluten is in just about everything we eat, drink, and bathe with – it can be tough to avoid. We could conceivably consume Gluten in every aspect of our daily lives.

Lately, public awareness has been growing for the digestive symptoms related to Celiac Disease like diarrhea, gas, cramping, and bloating. It’s a good sign, but one problem lies in the fact that only ½ the people with Celiac Disease actually have significant diarrhea as the primary symptom.[5]

Additionally, the disease has been linked to over 300 different symptoms, many of them subtle and seemingly unrelated to digestive problems. Other symptoms include fatigue, unexplained weight loss, depression, anxiety, joint pain, seizures, muscle cramps and many more.

That’s the problem with undiagnosed Celiac Disease… 

It’s not a lack of available testing … but a lack of recognizing the need to test for it in the first place. The disease is like a chameleon, sometimes manifesting into symptoms that don’t exactly scream out, “Hey Doc, I’m Celiac Disease.” Couple that with an average family physician 10-20 years out of medical school that’s not current on the latest Celiac Disease research and it’s a losing equation for everyone involved.

That’s what my story was like. After losing my mom in 2005 I started having diarrhea more and more every day… sometimes 10 or more gut-wrenching sessions. I was losing weight and malnourished. And even though I had some “classic” Celiac Disease symptoms, I also had a history of depression, anxiety, “nervous stomach”, chronic fatigue, and low iron.

Over the next year, I continued to go to the doctor with worsening diarrhea and received a different diagnosis each visit. First I got sent home with Fiber, then drugs for IBS, and then a colonoscopy looking for Ulcerative Colitis or Crohn’s Disease. It was only because of my emotional pleas the gastroenterologist agreed to take a small intestinal biopsy for Celiac Disease.

The bottom line is this: you could have Celiac Disease and not even know it… and your Doctor might not realize it either.

What Happens in Untreated Celiac Disease?

If Celiac Disease goes untreated… it’s not good. Here’s just a few of the increased risk factors from various studies:

  • 30% increased risk for GI cancer [6]
  • 40X increased risk for non-Hodgkin’s lymphoma of the small intestine [7]
  • 77X increased risk for lymphoma [8]

Then there’s the percentage of people with Celiac Disease that have the following associated conditions that aren’t going to go away if the Celiac Disease isn’t treated [9]

  • Anemia (3-6%)
  • Arthritis (20%)
  • Ataxia (40%)
  • Cows Milk Intolerance (24%)
  • Dermatitis (5%)
  • Diabetes-Type 1 (12%)
  • Irritable Bowel Syndrome (20%)
  • Liver Disease (42%)
  • Migraine Headaches (4%)
  • Nerve Disease and/or Peripheral Neuropathy (51%)
  • Obesity (30-40%)
  • Osteoporosis (4.5%)
  • Low Bone Density (70%)
  • Pancreatic & Thyroid Disorders (5-14%)

The important message here is this: it’s a good idea to rule out Celiac Disease if you have any of these problems… and it’s a REALLY good idea to treat Celiac Disease if you do get diagnosed.

A diagnosis isn’t the end of the world… as you can see, it could save your life.

The Gluten-Free Diet will save your life (maybe)…

It’s widely accepted that the first step in treating Celiac Disease is removing gluten from the diet with 100% strictness. In fact, this is the treatment plan copied right from the National Library of Medicine and typical of most doctor-patient conversations after a diagnosis: [10]

Celiac disease cannot be cured. However, your symptoms will go away and the villi in the lining of the intestines will heal if you follow a lifelong gluten-free diet. Do not eat foods, beverages, and medications that contain wheat, barley, rye, and possibly oats.

You must read food and medication labels carefully to look for hidden sources of these grains and ingredients related to them. Because wheat and barley grains are common in the American diet, sticking with this diet is challenging. With education and planning, you will heal.

While removing gluten exposure is critical to the treatment of the disease… it isn’t THE only treatment. It’s just part of it. The danger lies in the promise that people with Celiac Disease who follow a strict gluten-free diet for life will fully heal.

I followed a strict Gluten-Free diet for two years with only minor symptom-relief. And it turns out I’m not alone….

The Gluten Free Diet Isn’t Enough…

New research suggests that the small intestines of up to 60% of adults never completely heal from Celiac Disease despite following a Gluten-Free Diet.[11]

In one study of 241 Celiac Patients – small intestine mucosal recovery 2 years after following a Gluten-Gree Diet was 34% and 5 years later was only 66%.[12]

The authors stated :

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

Another study of 465 Celiac patients after 16 months on a Gluten-Free Diet found that:

“Complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to GFD.”[13]

So in other words, many of these people followed a gluten-free diet for years without completely healing the intestinal damage caused by the disease. If the intestinal damage never heals, it’s no wonder Celiac Disease patients are more likely to experience cancer or some other debilitating disease.

That’s incredibly depressing for people with Celiac Disease… especially if their Celiac Disease diagnosis went anything like mine:

I’d finally convinced my Gastroenterologist to order an endoscopy after years of horrible diarrhea, fatigue, and depression. A few weeks after the procedure I got a pamphlet in the mail from her called “Living Gluten-Free” with a hand-written note that said:

Jordan, Tests showed you have Celiac Disease. Follow a Gluten-Free Diet and you’ll be just fine.”

Ummm, what? What’s Celiac Disease and what’s gluten?!? How could gluten be causing all these problems in my life? I’ll really be just fine if I change my diet?

I can’t help but wonder how many people around the world get the same prescription I did and feel desperate when the Gluten-Free Diet doesn’t work.

But here’s what I do know: when I followed a strict Gluten-Free diet for 2 years believing I would be “just fine” and STILL had diarrhea 5-10 times a day, I came face-to-face with insanity.

In fact, things got a little scary when I was absolutely convinced I was getting “gluten contamination” from everything (like the dishwasher, cooking pans, silverware, water, air, kissing, breathing, whatever). It reached the lowest point when I thought I couldn’t eat anywhere but my own kitchen without getting “glutened.” But the reality is: it wasn’t gluten contamination at all.

The Gluten-Free Diet wasn’t working for me…

How to Tell if The Gluten-Free Diet Isn’t Working for You

If you have Celiac Disease and you’re following a Gluten-Free Diet… but still experiencing any of these symptoms, the Gluten-Free Diet isn’t working for you either.

(Remember: Celiac Disease symptoms may or may not occur in the digestive system.)

  • Recurring bloating and cramping
  • Chronic or recurrent diarrhea
  • Constipation
  • Nausea
  • Liver and biliary tract disorders
  • Weight loss
  • Pale, foul-smelling stool
  • Iron-deficiency anemia unresponsive to iron therapy
  • Fatigue
  • Arthralgia
  • Tingling numbness in the legs
  • Sores inside the mouth
  • Skin rashes/acne
  • Tooth discoloration or loss of enamel
  • Unexplained infertility or recurrent miscarriage
  • Osteopenia or osteoporosis
  • Anxiety and/or Depression

Each of these symptoms can present themselves as part of Celiac Disease and simply removing gluten can help. Many people even see a disappearance of random symptoms after they go gluten free.

However, if you have Celiac Disease and any of the these symptoms are still present… even on a Gluten-Free Diet, it’s likely gluten-free isn’t working for you. It might be providing some relief, but it’s not healing the underlying damage in your gut… which dramatically increases your risk for cancer and the other diseases I just mentioned.

That doesn’t mean all hope is lost either….

Why My Mom’s Story Matters to You

My mom is a prime example of what can happen when Celiac Disease goes undiagnosed and untreated. She suffered through stomach pain, an irradiated thyroid, rounds of chemotherapy, and an early medical retirement from her career. Above all – we lost her too early.

That’s part of the reason I fought for my diagnosis, why I pressed my doctors to get the tests I wanted, and why I followed my Gluten-Free prescription with the strictest adherence.

Yet I still suffered from life threatening symptoms. So much so that I wrote my first will at the age of 24 because I didn’t think I’d live much longer unless they miraculously figured out what else was wrong with me.

Then I got lucky and found a new doctor with new ideas about what it meant to treat Celiac Disease. A new doctor that finally helped me stop my diarrhea for the first time in 6 years.

I’m one of the majority

One of the 60% that didn’t get better from a Gluten-Free Diet alone…. I needed to do more to treat my Celiac Disease.

And in this series, I’m going to reveal why the Gluten-Free Diet isn’t enough to stop the symptoms of Celiac Disease and propose a step-by-step process you can follow to reverse the damage.

The next post: “How Gluten Causes 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 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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57 thoughts on “The Celiac Disease Epidemic: Why Gluten Free Isn’t Enough

  1. Avatar

    Hi Jordan,

    I am currently in a medical crisis. I need some insight and possible advice.

    Waiting for the atTG-ab results to come in to determine whether it is celiac or a parasite. I had typhoid six years ago. I’ve had “IBS” for a decade. I have a battery of autoimmune conditions and it’s LITERALLY exploded in the last few months.

    Before I share my story, I want to know that this site is still active and someone will reply. I don’t want to type it all out and never hear back — I’m truly looking for support, answers, suggestions, and experiences.

    Thanks in advance,

  2. Avatar

    Hi I have celiac I’ve had it since I was very lil and I’ve only really noticed now Iam 30 my weight is never the same it goes up and down loads with in no time at all I was wondering if there was anyway of keeping my weight down

  3. Avatar

    While working in the southern Philippines (age 38) I had an onset of severe diarrhea after eating some locally prepared food. After 7 days of GI distress I began a 30 day battery of antibiotics (US licensed physician treated and US supplied meds). The battery of antibiotics consisted of 10 days of amoxicillin (no improvement) followed by 10 days of ciprofloxacin (no improvement) followed by 10 days of flagyl and a simple diet of rice bananas and apples with improvements. The diarrhea along with abdominal distress bloating and brain fog would return upon gluten ingestion. After 3 x GI physicians diagnosis of celiac disease I finally accepted that my days of wheat barely and rye ingestion were over. Learning to manage my diet to avoid inadvertent gluten ingestion was another interesting journey…
    Hopes this helps,

  4. Avatar

    I too am celiac. You have a good informative post. You need to consider that you may have other food intolerances as well that can lead to inflammation and be causing more of your distress. It does not stop just with gluten. It is helpful to find a provider that tests for a host of immediate and delayed food sensitivities and also does work on your gastrointestinal tract (GI) or what the media and many call the gut. I was diagnosed with celiac when I started grad school and that changed the path of where I was headed and I pursued functional medicine. Look for a group that has medical professionals that do testing for food sensitivities and works with the GI tract. It does not end with celiac. It does help to find out what to avoid to reduce the inflammatory rudeness in your body.

  5. Avatar

    Just a tip for celiacs looking for a good bread . I have found SHAR white bread to be really good. Its from germany but imported to the u.s. I buy it from AMAZON PRIME ITS A LITTLE PRICEY but good

  6. Avatar

    Just wanted to tell my story in 1996 I was diagnosed with acute lymphocytic leukemia my brother who has celiac disease was my bone marrow donor. We were told that it would not be able to be transferred through transpant. Years after I suffered from chronic diarrhea stomach problems n rashes.. 6 or more years went by before I was diagnosed with celiac disease. I believe I had it before my cancer and that it caused my cancer. I am 58 glad to be alive but suffer daily from chronic fatigue syndrome pain rashes and nerve pain and numbness. I follow a strict gluten free diet. I see a list of Dr’s who have no answers….I trie to eat organic as often as I can… I have found little to no relief. ……

  7. Avatar


    this is very nice post….I am not sure whether i have celiac disease or not,
    But whenever i eat foods that contain wheat,my body generates so much heat,and wont be controlled even i drink so much water…..uncontrolled heat in my head is causing so many problems ,eye sight prbm and so many,,,,dont know what happend to my body,,,unable to figure out .

  8. Avatar

    I have suffered from Celiac symptoms since childhood, did the igg blood allergy test as diagnosis. I have all the wheats, dairy,egg etc. I had literally no vitamin D3, NO testosterone, magnesium, calcium left in my body. I’ve been jacked around for 30 plus years, no one would test me.. I’ve had RA for 39 yrs, Graves dusease for years, deafness, tinnitus, leaky gut etc.. you are right, physicians are the biggest morons living!! I’m still having issues, went to ER over weekend, medical workers are clueless as to what celiac even means?? I’ve barely worked the past 4 years, just after my youngest was born I went into my present episode which has just about killed mr. My father has the non Hodgkins lymphoma, my one sister died at 45, all grandparents on both sides died young of intestinal disease, and we can’t get any mainstream doctors to even test our children!!!!! The Lord sent me to a D.O. who is treating me and my children now, but I trust NOBODY in the medical system, as they will only push drugs on your already wasted gut. It’s embarrassing as an artisan contractor to know that a human body is treated with much less care than people’s homes.. problem with these plans and all is that most are probably just like me, been bled dry from doctors, diet and working avg 2 days a week.. Everyone’s after your money in this godless culture.. I hope to someday heal as I’m having pancreatic issues now.. I’m only carrying on for my children, so they can have a life and have the answer that I and my family weren’t privy to by the medical association. Thus is WW ll technology folks!!!!

    • Avatar

      @Chris – we are so sorry to hear everything you’ve been through with your health. We hope we can continue to support you as you heal and are thankful this information is available so your kids don’t have to go through this as well.

  9. Avatar

    Great article. I too received a note from my doctor, you have celiac…go in gluten free diet. I lived for years with joint pain and muscle cramps, allergies, skin issues. But no stomach issues. At least not until a few months before my diagnosis. I was left to figure everything out on my own. 6 weeks later, I am up and down. I found a new doctor and am waiting to get in. I have bouts of stomach pain, daily muscle cramping, fatigue, headaches. it’s all very scary and new!

  10. Avatar

    Some people are non-celiac gluten intolerant and have all of the same symptoms. There is no test for non-celiac gluten intolerance, so you may never get a “diagnosis”. However, you know your own body. If eating gluten free (and that includes hidden sources of gluten like mustard, processed meats, vinegar, most bbq and other sauces, coke (any pop or foods with caramel colouring) “modified” foods, etc. not just wheat, barley and rye makes you feel better it is likely ONE of your problems. Most people who have either problem generally have other intolerances like milk protein (casein) or lactose and allergies (like oils). I can eat eggs and the occasional “soft ice cream,” but cannot eat yogurt, cheeses, puddings, hard ice cream, or drink milk. As I’m a tea drinker, when I go out, I can tolerate a creamer of 2% milk in my tea without any symptoms (which were mainly diarrhea). There are many “gluten free” products on the market that I cannot eat because of these other allergies or intolerances. I found from my specialist that most of the leg and feet cramps were due to a diuretic included in my blood pressure medication. He changed this prescription, told me to buy the spray on magnesium at a health food store and rub the “mist” into the cramp. I get almost instant relief from this and have little cramping now that my medication was changed. I use cornstarch to make gravies for my meals (not flour) if I want a treat and eat some gluten free bread with sliced meat. You must constantly check to see if a product contains gluten and I usually go to the website and type in the question. Living gluten free is a whole new world and many, many people suffering from an autoimmune disease have the problem but don’t get diagnosed. Gluten intolerance has been found prevalent in persons suffering from schizophrenia, bi-polar, Parkinson’s, Multiple Sclerosis, psoriasis, fibromyalgia, Crohn’s, osteoporosis, Arthritis, autoimmune lung, thyroid or liver diseases etc., etc. In my 50’s, I also found that I was suffering from “hot flashes” across my neck which my doctor wrongfully attributed to menopause. That was when I discovered that the chronic (and embarrassing) non-controllable diarrhea, 12-15 kidney stones each year and swelling in the back of my neck, and the redness that appeared in the base of my throat disappeared after I stopped eating dairy products. I discovered that, dairy produced a “sporadic” attack on my para thyroid glands and once I stopped eating dairy, I have NEVER in 9 years had any symptoms like these since (unless I cheat on my diet). I spoke to my nephrologist (kidney doctor) about this, and he said, I could be right but there is NO RESEARCH available on this and a doctor couldn’t confirm it because of this. He added, you know your own body and if it works for you, you are probably right.

  11. Avatar
    Leigh Ann Clark says:

    Dear Jordan,
    . I am really thankful that you took the time to share you and your Mom’s story with other people that could possibly have Celiac and never even know it. I’m sorry to hear about the loss of your Mom & think it’s amazing how you decided to conduct further research into Celiac for those that have been suffering as well. I have lived in silence with Celiac for several years now with ZERO answers as to what could possibly be going on with me! Just this past week I finally found out that it is in fact Celiac. Now, I have to get all 3 of my kids tested as well. As you can see, everything is just NOW finally coming to light. It’s going be a long road ahead for me and my family now that Celiac has entered the equation. Anyways, I wanted to take the time to express my thanks to you for making all of this Celiac mess much easier for others to understand. My thought’s and prayers go out to you.
    . Sincerely,
    . Leigh Ann Clark

  12. Avatar


    I feel your pain. My mom passed in 2011 from colon cancer, stemming from undiagnosed celiac. I got tested and came back positive as well. I also feel that GF is not enough for me. Staying positive

  13. Avatar

    Good day! This post could not be written any better!
    Reading this post reminds me of my previous room mate!

    He always kept talking about this. I will forward this page to him.
    Fairly certain he will have a good read. Thank you for sharing!

  14. Avatar

    Hi there! I suspect that I have Celiac Disease. I have been reading up on the disease, testing, and treatment. I am left with one question. If the treatment for all gluten related problems, including Celiac is to change my diet, what is the real benefit of having the diagnosis? If there is no difference in treatment, does it really matter? I was given a genetic test for Celiac and I tested positive. My stomach issues disappeared when I started Paleo 8 months ago. Recently I started cheating on my Paleo diet by eating wheat products a few times a week. At first, there were no issues, especially when my gluten was eaten along with a probiotic. My issues gradually got worse until it was apparent that I had to stop. Within a couple of days of stopping wheat, I was fine again. Does it matter whether I have a Celiac diagnosis or not? It seems obvious that I should stop eating gluten regardless of what official condition is bothering me. Still, everything that I read suggest that once a person has eliminated gluten and re-introduced it to confirm the issue, the next step is testing. I don’t understand what is gained from the additional testing. Please help.

    • Avatar

      Hi Jess, thank you for reaching out! You certainly do not need a test to confirm anything if you do not want one, as your body will tell you what works and what doesn’t. Many, however, do want those objective results and therefore get the test. Continue to build your safe food zone and listen to your body.

  15. Avatar

    I have asked two doctors to test me and they both said I don’t have it and won’t give me the test. I was just allergy tested and show high intolerance to wheat, rye, barley, most of the grains. Why don’t doctors just test? What is the big deal.

  16. Avatar

    We have been in the hospital since November 21, 2013 with my 6 year old son, Jayson. He had intermittent nausea/vomiting for a few days prior to the night he was admitted to the hospital through the E.R. On that night he woke us up with terrible stomach pain. It took several tests, ultrasound, CT scan, MRI and blood tests and after 3 days the doctors say is down and started he had tested positive for Celiac Disease. This was the first time we heard of it. But the doctors said there may be something else and scheduled a biopsy to confirm the celiac. On the day of the biopsy, the surgeon came out to tell us he had removed a tumor and a section of our sons small intestine and that he had cancer! We were devastated….Upon researching CD we found that untreated Celiac could lead to tumors yet the doctors denied this. My son has also been diagnosed with Non-Hodgkins Lymphoma stage 2. This broke my heart! I felt that I should have noticed the weight loss, or that something was wrong. He did not have constant diarrhea or vomiting. The only symptoms was the few days he threw up and some weight loss. I am concerned with the doctors not relating the effects of untreated CD. I refuse to believe that he suddenly had cancer AND CD. Our whole world is now turned upside down. We have completed 3 of 5 chemotherapy treatments. Yes, my 6 yr. old in Chemo. I feel like there has to be more research, treatment, and education of CD. As far as his diet, we were given a handout (2 pages) on celiac disease. Nothing more. I did more research online sitting in the hospital and gathered my own information. I want my child to be able to live, thrive, and eat healthy foods. No child or parent should have to experience what we have. There has to be more focus on preventing, detecting, and treating this disease before it claims many more lives. I will be introducing the SCD diet to Jayson and our family now that I have this information. Thank you Jordan and everyone who posts their story. People will gain the knowledge to take control of their health and live long healthy lives.

  17. Avatar
    nancy henderson says:

    i have been GF for a few years now. same story: experienced some relief, but still
    had problems. after beg SCD i noticed a change right away, for better, however, i now
    am very bloated since incorporating more meat. i have a hard time digesting meat b/cause my pancreas is insufficient due to my auto-immune disorder called Sjogren’s, which the doctor and i believe has been attacking the pancreas for years. i take “digest gold” enzymes and hydrochloric acid, both w/every meal. i struggle to keep weight on.any suggestions?
    encouraged, now concerned

  18. Avatar

    I have gone through a similar experience as you have. Near the end of my years in college, I was on the brink of death, but had adapted my lifestyle to feeling sick all the time. Living gluten free in my family was nearly impossible, but while I was traveling out of the country, I noticed my symptoms go away. It was amazing to me because I believe that culture simply didn’t cook with wheat. In the US, people dust things with flour just because, or throw a cup of flour into a soup or stew to “thicken” it, even though it is really unnecessary.

    I see my brother and mother suffering from being bloated all of the time, but they refuse to admit that it is abnormal. I fear something similar may happen to my mother, and yes, because no one will test her. They are likely distracted by her other symptoms, such as obesity, low energy, and bloatedness.

    The real reason I wanted to comment is that (1) I have never tested positive for Celiac Disease. I have a self-diagnosed allergy to anything containing wheat or lactose after thousands of dollars spent with a gastro-enterologist. And (2) recently I started eating gluten-free chex mix with lactose free milk in the US, and some (though not all) of my symptoms have returned. Have you had any experiences having to cut out gluten-free products that are similar to wheat-based products in the way they are made (using, for example, baking powder or baking soda)?

  19. Avatar

    I have a daughter who was diagnosed with celiac disease. Her symptoms arent too bad, she just gets nauseous when she eats gluten. Her doctor told us that the only cure is to completely eliminate gluten from her diet. She has been gluten free for quite some time now, but her symptoms havent disappeared. I read your article, and I noticed that you said eating gluten-free isnt the only cure. Im not sure if maybe I missed the part where you told us what the other cure is or not? It would be great if you could respond and let me know what the other possible cure might be.. thanks!

  20. Avatar

    This may be obvious but is this partially because CORN, a gluten grain, is still considered “gluten-free”? And oats, which have a natural 5ppm gluten content. These are the “gluten-free” foods people are eating. Gluten-free isn’t working because gluten-FREE, isn’t “20ppm or less” it’s ZERO. Zilch! None!! If you are consuming corn, or oats on your “gluten free” diet, you aren’t gluten free period. You won’t escape symptoms. You won’t feel better. Stop eating ANY food with gluten, do your own chemical research on grains, and discover for yourself how to be ACTUALLY gluten-free, not “what some book tells you.”

    • Avatar
      Ralph Tribbey says:

      Just to set the record straight here. Corn gluten is not the same as wheat, barley, or rye gluten. Corn may not be all that healthy in large doses, but it does not contain the harmful gluten that celiacs cannot have.

      Also, oats are normally not gluten free because of the fact that most of them are grown next to wheat or barley fields, not because they contain gluten. Inevitably, typical oat farms will have “cross contamination” from neighboring fields. You can find oats that were grown isolated from wheat fields, therefore, are gluten free.

      I know from 5 years of personal celiac disease and research.

      I do agree with the fact that 20 ppm is not gluten free.

      • Avatar

        Hi I’ve had ceglisc axlmost my entire life. I was only off of just wheat as a toddler though because my parents couldn’t find a doctor who knew what celiac was. So I somehow grew up but very skinny& sickly. I finally landed in a hospital in approx 1970 and had a small bowel biopsy which confirmed celiac. I stopped gluten& managed to have 3 healthy children but after the 3rd, I got hyperthyroidism& had radiation& take levothyroxine for life. I began getting sinusitis too& had a 2nd sinus surgery last April.(i think it was unecessarry). Anyways, I’ve been infected chronically ever since& am now very depressed. I gained a ton of weight too without hardly any calories. I had a Bld test that showed antibodies attacking my thyroid& that I’m lacking proper antibody response to respiratory infections so I had to get 2 vaccinations& am to get my blood retested the end of this month& if I do not react properly, I we told I will need immunotherapy in a hospital for life! I am scared to death! My primary doctor tells me I’m complicated. My 1st husband divorced me over my health status after having kids& ripped me off financially. I’m remarried to a good man but WE are low income& I will probably end up on aid I’m assuming. Idk what to do anymore. I hurt my back too a long time ago& had 3 spinal surgeries too. Any suggestions on what kind of Dr could help me out? I’m getting diarrhea Jeff& there in the am after taking my levothyroxine. No one cares at all about this! I’m really feeling bummed out big time! Pls give me some advice. I’m taking good vitamins too.

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          HI Kathy – really sorry to hear this. First, we have a ton of free information on our website, including a free quick start guide that would be a great place to start: I also think your time, efforts, and energy would be best invested in a one-on-one consult with a functional medicine practitioner. They will be able to assess all the details and get you the attention you need to get healthy.

          We have a recommended practitioners page now so you don’t have to look very far. Here are the details:

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    I am 48 years old. I am suffering from CELIAC DISEASE since birth. But I came to know only a year ago. I am following gluten free diet. But diarrhea is still happened once in fortnight so diet is not sufficient to me. Most of the symptoms have been confirmed. What should I do ?

    Madhoram Ojha, New Delhi

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    Thank you for sharing your heart about your mom. It makes me think of my kids and my desire to want to be well for them. I am 54 years old and have 3 beautiful adult children that I love very much, plus a wonder new Daughter-in-law, and the all want me to hang around for a long time. Anyway, my story is much like many who have written here. I have probably dealt with Intestinal/Stomach issues since I was a kid. By 21 one I had been labeled with IBS and Acid Reflex. The Doctor at the time said my upper stomach and esophagus was totally inflamed and of course they stuck my on medications that I weaned myself years later as I learned new things about diet and exercise. But even after a while that didn’t work and I was exercising about 3 hours day at the time and eating a low carb diet and not losing weight. I had gone from a size 7 junior size to a size 14 misses in my 40s doing the right thing. Oh, and after exercising all I wanted to do was sleep and my body was really starting to hurt, joints, muscles and migraine headaches . My husband then said to me, I think you’re having problems with your Thyroid, why don’t you get it checked out. Sure enough I was tested positive for Hashimoto’s Thyroid Disease, which has been a struggle in itself finding the right doctor that would managed that properly. I still continued to eat a low carb diet, because I had a sister who died from Diabetes at age 60. She was in a horrible condition when she died. The disease was nasty to her. It was awful to watching her life decline and her death was mortifying and ugly. So, I continued to eat low-carb, and one thing that began to stick out to me was when I didn’t eat bread or pastas, which one doesn’t eat a lot of on low carb diet, I wasn’t having as many intestinal issues. Especially in the first phase of the diet, you don’t eat any breads or pastas, I was totally eating just meat, low carb vegetables and some low carb fruits and that’s when, I felt my best of course along with taking my Thyroid medication. But I noticed that I started feeling sick, after introducing breads. I had just made a banana nut bread with a very high gluten flour and splenda. Oh I was so sick, I thought it was the splenda and never used it again, it didn’t connect with me that it was the high gluten flour that I was using at the time. But as time went on my brain began to connect the dots as I did research. Finally in my early 50s, my adrenal gland started having problems and one of my doctors was considering to use natural bio-identical cortisol to help a slowing adrenal gland, since it was causing problems with bringing my Thyroid levels up to a normal number. Anyway, it was at this time I went and got myself tested for Celiac Disease and I used an unconventional testing that is not yet peered reviewed along with getting my DNA checked at EnteroLabs The test came out not just a little sensitive, but of the records crazy high of the charts high in every area that I was tested for Gluten. Plus my DNA came back positive as having one DNA GENE for Celiac. So, in my mind there was no way this was a false negative. If, my numbers had come back really small or slightly, as it did with Casein sensitivities, I would have just ignored it. But the numbers, plus DNA said RED FLAG. I have Celiac Disease, so I started on a Gluten Free Diet. It sort of helped, and intestinally I began to feel better and bloating started to go down then was at age 52. My Doctor kept saying it’s probably going to take a while, because I have had this all my life. He never told me I may not heal. I heard that from the person who lead our local chapter for people who had celiac Disease. Anyway, it is now been two years exactly, since that test and me going Gluten Free. Yes, it is a learning curve to learn where glutens are hidden, but I think that I hate the most is that I have worked hard to getting glutens out of my life and I am very diligent to check and call companies, when I am using their products. My Kitchen has been gluttonized. There is not a speck of it in my home. I even bought new pots and pans and went to using glass containers, instead of plastic. Make-up such as foundation and lipstick was changed along with all types of things one uses, including toothpaste. I have been diligent on this diet, but I still have problems. So, I was beginning to ask my Doctor, could there be anything else that could be brothering me and causing these problems. And he basically told me it would be a waste of time to figure it out and not to worry about it. Besides what would you eat since you already eat low-carb, your Gluten Free and you also don’t eat dairy, corn or soy. What else could you be having problems with? I mentioned I think rice might be a problem, which I was eating occasionally. He said look, you’re going to get bored with eating and you’re going to cheat, if you take anything else out of your diet. AND I’m concerned that you won’t being eating enough healthy foods in your diet. At that point, I was a little bugged by what he said, but I didn’t get angry with him. I just want to feel better and was hoping there is an answer. But I was also a little bugged, because I was noticing that some of the supplements that He had been giving me had rice in them and also rice malt dextrin, which is supposed to be safe Celiac or Gluten Sensitivity. One or the products, I gave back to him was a protein type powder with mainly rice protein, was really making me sick when I used it, so I gave it back to him. He just kind of laughed and didn’t believe me. Then I began to realize that the HGH supplement that I was using also had Rice Maltodextrin in it, but I finished those off, because I didn’t want him laughing at me. But as I used them my Acid Reflex really got bad and by the time I was finished using the product. I was having really bad Acid Reflex. I was happy that he didn’t want me to go back on them again. Maybe he believed me about rice, I don’t know. What really drove me crazy is when I found out that one of the Virus medication I had been taking had Wheat Starch in it. For months I had been talking this product, and I was trusting my Doctor that it was a safe medication. It wasn’t until, I received this medication in its original box this last time that I could finally read the ingredients for myself and on the box was Wheat Starch. Well, I didn’t panic right away, but now I had the info to call the company to see what they meant by wheat starch, because Wheat Starch pharmaceutically is supposed to be free of Wheat Glutens. Well, it wasn’t and the company that made the product could not tell me how much wheat gluten was in it, but they new it was under 309pp, because that was all the Wheat Starch they were allowed to use in the product. But they told me if I was highly sensitive to Wheat Glutens that this was probably not a good product for me to use. Wow!!!! Here I had done my part to keeping myself clear from glutens, and I’m getting it in the medication I was taking. Wouldn’t the Doctor know this? Well, Companies don’t always report to doctors, when they have changed a product. Yes, originally the product that I was taking was Gluten Free, but two years prior in 2009 the company decided to change the product to using Wheat Starch. They did not tell Doctors of this change, but they did posted it on their web site not in real big print, but it’s there. How can a doctor keep up with this for all their patients. So, I didn’t get mad with my doctor, until my husband brought the medication back to the office and he did not really respond with any positive remarks, “Like I really feel bad that this happened and we will have to be more careful, but will make sure it doesn’t happen again. Instead he barely talked with my husband at all and just said oh Well, I guess we will have to do better and walked away without any remorse or concern for me. My husband was livid. Of course he kept it all under control and thank goodness the office refunded are money for the medication. Anyway, this has been a frustrating journey, and now I will be visiting a brand new doctor on March 22. It’s possible that she will be putting me on the SCD diet, which is what an e-mail from her office mentioned might be a possibility for me. So, I have been researching it to try to understand it. My concerns is the use of Honey and some of the High carb fruits later on in the diet. Anyway, my journey still continues and I hope this new Doctor will have a better idea of what I need to do for diet. If it’s the SCD Diet, I don’t care. I just want my life back. My family needs me.

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    So many folks think Celiac’s disease is much less serious like lactose intolerance or other discomforts from eating. With every restaurant we interview, what’s most important is that they have GF options AND that they have a process in the kitchen to minimize the risk of cross contamination for any food allergy. Only 10% of restaurants “get it”. Having GF options alone, isn’t enough. Be careful but don’t let Celiac’s limit your social life!

    Steve Rosenbaum, Founder of, the Celiac and Food Allergy Restaurant Guide

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    Since we live relatively close, I was wondering if you could share your open minded Dr.’s name with me. Half the problem with these diseases (and many others for that matter) is the Dr. is trained only in conventional methods and not willing or able to explore other alternative forms of medicine. Thanks, Cathy

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    Celiac and Crohns mom says:

    Jordan, Thanks for excellent overview of celiac. Our daughter was diagnosed almost 8 years ago and has been gluten free ever since. However she was also diagnosed with Crohns 3 years ago. I have heard from numerous doctors that there is no connection. I disagree! Since starting SCD 7 months ago, we finally have seen perfect lab results along with a healthy growing girl who is introducing her 4th grade friends to spaghetti squash and lettuce wraps. Adhering to any diet GF or SCD has challenges – but we are witnessing the healing power in our house and that is motivating! It is refreshing to see how far Gluten free has come in 8 years – here is hope to the fact that SCD might make it there as well.

    Thanks for sharing your experiences on these topics – the more we can educate the better!!

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    Hi Jordan, Sorry about your mom. My mom died at 49 had some digestive issues but never went to doc, we’ll never know if that’s where I got celiac. Totally agree with you that a gf diet is not enough! Low carb and exercise makes me feel so much better. Yay for Make Over Your Morning!

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    After reading your story I don’t fell alone. I have been suffering with a diagnosis of IBS for 30 years. Doctors use IBS when they can’t figure out what you have. We’ve all been there, diarhea- hits at the most inappropriate times and worse when you are away from home! I’ve missed so many occasions that I lost count. I’ve spent hours in public restrooms that I was so embarassed and used the ‘stomach virus’ excuse to avoid questions. Finally, after years and years of suffering I decided to do my own research. A friend has CD and she said you could be gluten intolerant. I told my doctor who said he would first try a bloodtest, which proved negative. I told him I’d like to do my own test, stop eating gluten. He said, well it is possible that you could be gluten intolerant or gluten sensitive and no test will tell you that, and by eliminating gluten will tell you how you react in time. I gave it 6 months as a first marker for my goal. I have to admit I did feel better within 30 days, and as each day went by I felt better. But still out of the blue would have my attacks which I could not figure out. I was following a strict gluten free diet, or so I thought. From all of my research, talking to people that have CD, it is a life long committment and the damage done to your intestines never heal 100%. Am I better? Yes, I now can go out not wondering where is the bathroom in this place? But I know that the attacks will surface because somehow not everything is 100% in life. Learning to buy gluten free was an education in itself. I’ve learned to cook differently. I know what I can and cannot eat. I read labels. Gluten has other names for it. I also discovered that gluten is hidden in so many things that it is impossible to completely avoid it. It is in soaps, cosmetics, and toothpaste. But each day I learn more and more and hopefully one day I will be able to be 99% better. It is so comforting to read that there are others out there that understand what I experience. We’ve come a long way and more awareness needs to be done so you can go out to a restaurant and not feel like you may or may not make it home in time as the chef cooked your meal in a pan not dedicated for gluten free meals. I wish everyone on this posting much luck and good health.

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    Ruth Buchweitz says:

    A very, very moving post–and frightening. So many people are suffering and do not know know where to turn. I was one of them. According to the doctors, I do not have Celiac Disease but I do have a sensitivity to gluten (along with collageneous colitis). A year of being gluten free was no help at all. The Specific Carbohydrate Diet (SCD) saved my life. Thank you for your guidance and encouragement as I learned how to navigate the stages of SCD. Thank you for helping me feel good again.

    • Jordan Reasoner
      Jordan Reasoner says:

      Thank you for such kind-hearted comments. Share you story with anyone that will listen and raise awareness… you are so amazing 🙂

      I hope that together we can educate more people that The Gluten-Free Diet just doesn’t cut it.


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    Sent your post to my 9 siblings. Mom died of Scleroting cholangitis,and experienced so many of these symptoms from what I can tell, but she was not irish/scottish=she was 100% dutch american. Having 11 children will kill most women, but it was not about us, so much. Anyway, your diet has helped to heal my colon. I keep falling off the wagon while on the prednisone, but have decided I just need to go cold turkey-stop the madness and get over wheat and sugar. Doc wants me to take remicade now. Can’t do that one. So this is time to face the facts. Has anyone tried fecal infusions? He really wants me to do that, but I am not sure I can do that either, since it is not a legal procedure in the U.S. He has tested me and not Celiac disease. Too many antiobiotics over the years I suppose. I am on grain free diet when I can stick to it.

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    I, too, am one that the gluten free diet didn’t work for. I was self diagnosed and followed a strict gf diet for 6 years until D got so bad that I was hospitalized for dehydration. They did an endoscopy and biopsy and said yes, you have cd. We didn’t even need a biopsy to tell because the disease was visible. They insisted that I was getting gluten from somewhere. That was in 2008. Not until 2011 did I learn about the SCD diet. I am doing better on it, but all is not perfect yet. I guess with a lifetime of damage, it will take many years to heal.

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    I’m sorry to hear about your mom. 🙁 I’m glad that you were able to push for a diagnosis in your own case. I can’t believe how long it took for my Celiac Disease to be correctly diagnosed; I suspect I’ve had it since birth or soon after. I was actually chatting on FB with a friend of mine the other day who also has gluten ataxia (it’s nice to at least know one person who has what I have! – and she’s really sweet), and she had posted this interesting link:

    We assume, on the Gluten Free diet, that these other grains are fine for us to eat which also have glutens, but there is little research to back up this theory. The more people I talk to in the last year, the more I hear murmurings suggesting that folks are starting to think critically about what these other grains may be doing to us as well. I think it’s a great question and can only hope that in time, some of those research $’s will get funneled through to perform adequate testing and see how folks with CD react to these other glutens and if these other grains and grain products can stall full healing.

    One more reason I’m so grateful for SCD!

    Gutsy Girl

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