The Gluten-Free Diet Didn’t Help Amy with Her Celiac Disease, But Here’s What Did



Do you feel like your digestive symptoms hold you back from reaching your full potential?

I know I felt that way when I was really sick.

Whether I was in trouble with my boss because I was stuck in the bathroom with diarrhea AGAIN or watching my kids as they played outside while I was too weak and exhausted to join them, I knew… I was capable of so much more if I could just get well.

That’s how it was for my friend Amy, too. In fact, Amy and I have a LOT in common:

  • We both worked in the fast-paced world of engineering
  • We were both diagnosed with Celiac, after a lifetime of health problems
  • We both got WORSE following a conventional gluten-free diet

We have one other thing in common too… we both took control of our health and started healing.

I’ll let Amy explain how our Solving Leaky Gut program is helping her overcome the lifetime of symptoms that have been holding her back.

[Enter Amy]

Up until about 1997, I think most people would have used one or all of the following adjectives to describe me: hard-working, overachiever, Type A, engineer, athlete, leader, extrovert.

But I suddenly found myself still trying to be all of those things, while silently battling chronic pain and fatigue, tingling skin, periodic numbness in my hands and feet, memory lapses, constant sickness, and a series of doctor visits and laboratory testing that all came back largely inconclusive.

There were days I could barely get out of bed and my family was afraid to hug me because they knew it hurt. It sure put a damper on the excitement of graduating from college and starting my life as an independent adult!

This cycle would continue for roughly ten years.

Looking back now, I recognize that I had lots of symptoms when I was growing up – hindsight really is 20/20.

I have vibrant memories of ongoing battles with:

  • Strep throat from a very early age, only to be told as an adult “you’re a carrier and there’s nothing that can be done to change that”
  • Doctors telling my parents I was mildly anemic and to load me up on iron-rich foods, like Cream of Wheat
  • Menstrual cycles that were so irregular and heavy that I faced them with an abnormal and unhealthy dread
  • My family always remarking that I went to the bathroom immediately after every meal because I was trying to get out of my chore of washing dishes (although it never actually got me out of doing the dishes – the dishes were always still waiting for me when I returned!)

I Maintained as Much Normalcy as I Could

At the height of my poor health status, I worked really hard to maintain as much normalcy as I could… complete with balancing a high-pressure engineering job and completing my Master’s degree concurrently.

I then decided that I should go back to graduate school full-time for my Ph.D. – why not?!

I simply could not allow myself to be “sick” – after all, I looked generally healthy on the outside. I was pushing myself to exhaustion (not that I had very far to go most days) just to make sure I was living my life as best I could and accomplishing the goals I’d set for myself in spite of the obstacles.

I still had no real answers as to what was causing my illness and it had evolved into a process of elimination. Much like peeling an onion, we were peeling back the layers and treating each symptom of the day:

  • Hypothyroid
  • Fibromyalgia
  • Chronic fatigue
  • Anemia
  • GERD
  • Depression
  • And the list goes on

Because treating these conditions still wasn’t solving the problem, doctors started looking for some pretty serious underlying conditions:

I was about six years into this process by then – exhausted from having no substantial answers, being told (or at least suggested) that it was all in my head and, at my lowest point, entirely convinced that this mystery illness would kill me.

I was only about 27 or so at the time and routinely questioned whether I’d live to see 40.

The Vicious Cycle Continued…

By about 2007, the vicious cycle was continuing and I was managing my Ph.D. work, while seeing a whole new panel of doctors trying to figure out what was wrong and to manage the symptoms I had.

The day’s events are now burned into my brain – I’d gone out with friends the evening before and woken up in a terrible state… horribly bloated, in pain all over my body, and exhausted well beyond what would be considered normal after even a semi-late night. As I sat in the office, I said to my doctor “you know, I can’t imagine that all of this isn’t related to something I’m eating or something in my environment that no one has found yet.”

In that instant, his face lit up and he said he thought he knew what was wrong. More blood work was conducted, and it pointed to a few different food allergies as well as Celiac disease.

Celiac was confirmed by biopsy three days later.

Even though I shouldn’t have been surprised, I was shocked. Part of the shock was that no one had picked up on this along the way and I’ve spent some time trying to rationalize that, but most of the shock rested in finally having what my doctor felt confident was the underlying answer.

So, I Started on a Gluten-Free Diet

Although the concern that this was just “one more diagnosis” versus “THE diagnosis” rested firmly in the back of my mind, the changes were noteworthy within about six months of starting a gluten-free diet. (Those over-achieving personality traits drove me to learn and manage everything I could.)

I FINALLY had an answer and was back in control of my health ….until I wasn’t anymore.

Early in 2015, I finally admitted to myself that something wasn’t quite right. I felt like I was reacting to everything I put in my mouth. The fatigue had returned; my routine blood work was increasingly poor, especially with respect to vitamin absorption and cholesterol/triglycerides; and I started getting sick pretty frequently again. I always had a reason – I’d changed jobs, so it was easy to convince myself and others that it was related to the stress of my new job or the fact that I was traveling 30-50% of the time and had a lot more exposure to cross-contamination.

I went to see my gastroenterologist and I showed severe GERD and associated GI damage, so we treated it. For the next year, some of the symptoms eased while other symptoms did not, but at least it made it a bit more tolerable.

Finally, in early 2016, I had a lull in my travel schedule and was forced to admit to myself that something was really off.

By Now, My Blood Work Was Entirely Out-of-Whack…

And a scope/biopsy of my GI tract showed it to be in really poor condition. How could that be when I’d been nearly obsessive about my gluten-free diet and generally without symptom for the last nine years?!

My doctor referred me to a nutritionist on his staff and I was fortunate to immediately hit it off with her. Her holistic approach spoke to me and we started talking about how to identify the triggers. She already had her suspicions – corn and nightshades among them – based on previous and preliminary blood work and our general conversations.

Admittedly, I wanted to curl up and cry since corn is such a prevalent replacement for wheat in gluten-free diets.

She also wanted to put me back on natural dietary supplements rather than synthetic ones, because she believed I would absorb and metabolize them much better.

The messages I heard in that first meeting were scary, though – more to change, more to learn, and more to manage. I’m lucky that the tools I needed were right in her kit – she’d developed her own strategy for such scenarios over her years of practice, but had also seen a lot of success with Jordan and Steve’s Solving Leaky Gut protocols and immediately recommended I look into them if for no other reason than to educate myself and find a community of support.

My personal protocol has been a hybrid of the two strategies, but they overlap and complement pretty seamlessly. At the core of both is the process of removing the potential triggers, allowing the gut to heal, and then identifying the triggers for long-term removal. The logical and methodical approach certainly speaks to me.

There was no time like the present, and we kicked things off the last week of March 2016.

The Changes Were Impressive and Almost Immediate

During the first week, though, it became evident that my GI tract was so raw and damaged that I really wasn’t tolerating much at all by way of solid foods, so I lived on the SCD chicken soup and homemade apple/pear puree for roughly the first 30 days.

By that point, if someone had told me I had to live on only soup and applesauce for the rest of my life, but could guarantee that I’d feel fantastic every single day for the rest of my life, I’d have signed up immediately – I was that sick and tired of being sick and tired.

Simultaneously, we began addressing other symptoms, like constipation, that I didn’t even realize were an issue until we started talking about them in-depth. At the end of that first 30 days, I felt fantastic.

We then introduced more solid foods – primarily meats and cooked fruits/veggies.

Even now, over 90 days in, I can tolerate some and not others that should be “safe”… and I’m okay with that. As my nutritionist predicted, I’m not doing well with corn or nightshades, but even then it’s a lot of trial and error. I’m still not tolerating any raw veggies and only a handful of raw fruits.

There’s a long road ahead, but it’s already so worth it. Not only am I feeling like I’m on the upswing, but I’m seeing tangible evidence as well. My last scope/biopsy showed noteworthy improvement in the physical condition of my GI tract and my latest round of routine blood work showed the best vitamin absorption and cholesterol/triglyceride levels that I’ve seen in at least six years, including a sudden drop in triglycerides of over 100 points!

It’s a Tough Road and Definitely Not a Perfect Process

I certainly feel like I experience at least as many failures as successes, while I work on continued healing and reintroduction of foods. But the successes I do experience are so tangible that they keep me going.

What’s been hard for me at times is to focus on my own journey and not be overwhelmed. I often read the comments and questions on the Facebook page and think I’m completely missing the boat on things that others are picking up on – the nuances of supplements or other underlying conditions that should be addressed as part of this process.

It’s easy to find myself spiraling into thoughts of “How did they even know about that topic? Will I ever be healthy if I don’t immediately learn about all of those things?”

For me, the answer has been a resounding yes and the reality has been that I don’t have to do the fine-tuning all at once because I’m seeing success just in doing what I’m doing now. In fact, I don’t think it would be mentally healthy for me to even try to dig into those depths right now. Identifying those foods that send my autoimmune system into overdrive has been far more critical than tackling this complicated beast all at once.

I feel great compassion to those who continue to struggle because they haven’t had the luxury of seeing success simply from food elimination and dietary supplementation alone as I have! (More evidence that while we’re one community, we’re still very diverse individuals living within it.)

Today, I get to focus on my own journey, safe and confident that I’ve got this community standing by for support and information and equally confident that I’ll eventually be a member who gets to offer that same support and information to others.

-Amy C.

[Enter Jordan]

We’re so grateful to have Amy as part of our Solving Leaky Gut community and for sharing her story here today.

Sharing success stories is so important to me because they were pivotal in healing myself. I hope Amy’s story can inspire you like it has all of us on the SCD Lifestyle team.

If you’re feeling like Amy and I once felt – exhausted, overwhelmed, and hopeless – the first step to changing all that is attending a FREE webinar on how to Solve Leaky Gut here:


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