various gluten free grains, beans, and flours on wooden spoons with text overlay - Conquering Celiac Disease: [Part 2] Why a Gluten-Free Diet Didn't Fix Me

Conquering Celiac Disease: Why a Gluten-Free Diet Didn’t Fix Me

Frank Celiac Disease, Living Well with Autoimmune Disease 14 Comments

This is Part 2 of my Conquering Celiac Disease series which outlines my personal experience with Celiac Disease.  The other posts in this series include:

Part 1 – 10 Symptoms that Finally Made Sense

Part 3 – What I’d Do if I Was Diagnosed Today

Disclaimer:  I am not a doctor and the information provided in this post is not to be used as medical advice or to treat/diagnose any disease.


millet, chickpea, and rice flours on wooden spoons with text overlay - Conquering Celiac Disease: Why a Gluten-Free Diet Didn't Fix MeDo you know what the “treatment” for Celiac Disease is?

I bet you do!  It’s so simple isn’t it?

Just go gluten-free!

That’s what they say anyway.  They being the internet, and likely, every doctor you ask.

The best part is, it’s so easy.

Oh?  So why didn’t a gluten free diet work for me?  In all fairness, I maybe, just a little…

OK I Cheated!

That’s right!  I confess.  When I should have been staying miles away from gluten, I indulged.

Sometimes I would accept the pita bread with my salad just so I could chew it up and spit it out.  I’m Italian!  I basically grew up on bread and pasta.  What, now I’m just supposed to ban it forever?

The answer is, yes.  As a Celiac sufferer, I cannot eat foods that contain gluten.  But man, was it difficult.  So, I had a little bit of pasta here.  Maybe a small bite of bread there.  It wasn’t much.

But the problem is, if you suffer from Celiac Disease, eating any gluten at all (even just a crumb) can cause inflammation for months, even years!  So, a little bite of bread here and pasta there, say 4 times per year, equates to constant inflammation.  

So obviously my cheating lead to constant inflammation… a pretty logical explanation as to why I didn’t improve.

But eventually (it didn’t take long), I stopped cheating on the diet, and… I wasn’t cured.

So what gives?

Cross-Contamination

About a year after I went full gluten-free, and struggled to find restaurants or simple meals to substitute as normal food (think pasta and pizza), everyone and their aunt decided that gluten was evil.

This was great for me!  All of a sudden super-markets and restaurants had a separate gluten-free aisle or menu, and I was in business.

Or so I thought.

After I had finally committed to the gluten-free way of life, I expected it to make me feel better.  And it did for the most part, but for some reason I kept flaring up.

It turns out, restaurants that have a gluten free menu DON’T have a gluten-free kitchen (some do, but not many).

So basically, if I wanted to go out to eat, I had to really make it clear that I needed a dish that was completely gluten-free.

“Sir or ma’am, please understand that your gluten will make my intestines melt so do me a favor and remove it.  Thanks.”

Even with a VERY clear statement such as this, there were no guarantees (like that one time the gluten-free bread was indeed NOT gluten-free, like at all).  So eventually I phased out gluten-free restaurant dining completely…

And you guessed it.  I was still inflamed!  The symptoms were still there.

SAD

Yes, I was sad…

But if you haven’t seen this acronym before, it stands for Standard American Diet – which truly is: SAD!

When I went gluten-free, I did it like most people do.  Remove 1-part gluten-filled flours, substitute 1-part gluten-free flours.

Job done!

But it wasn’t for me, and I would argue that other Celiacers still suffer too.  Maybe not as much, but I know plenty of people that still have issues, and it’s because we have been taught to eat all the wrong things in all the wrong quantities.

Being GFSAD instead of just SAD is the same thing. Loading up on processed flours (gluten-free or not) is a great way to spike blood sugar and send your body into a frantic recovery mode to try and stabilize itself.

Does that sound like a way to reduce inflammation and heal yourself?

Uh, no.

I was slowly figuring out what it took to get my body to stop shouting at me, but wasn’t finished solving the puzzle.

Celiac Disease might not be limited to JUST gluten.

Think for a second about what Celiac disease is: an immune response (triggered by gluten) that targets and breaks down the villi of the intestines.

Villi are the small finger-like parts of the intestinal wall.  If they break down, you have a very thin, exposed epithelial layer that becomes much easier to break through.

And if food does break through your intestinal wall, even in small amounts, your body will attack it like any other foreign substance…

Compare to viruses and other harmful types of bacteria.  Why?

Because food is supposed to stay in your digestive system: mouth to… the end (you know).  So, when it doesn’t stay contained, and it gets into your blood stream – your body flares and creates antibodies and a big mess ensues.

Commence “leaky gut.”

Unknowingly I had leaky gut.  So, when I pulled out the gluten, my inflammation died down a little, but I also had developed sensitivities to other foods like corn, dairy, and beans.

The reactions to these foods became even more apparent.  Corn caused me to break out in hives or rashes and itch like crazy – bad enough to bleed!

So, I systematically removed these foods until I had a much cleaner baseline. I was FINALLY starting to get somewhere.

Other Contributing Factors

Sometime before I discovered my other sensitivities, I started eating only organic fruits and vegetables.  I also started sourcing properly fed and humanely-raised meats and poultry.

Once I cleaned up my diet to this level, food stopped being such a trigger.  Unfortunately though, all my trials had shut down my body’s main enzyme producer:

My pancreas.

After it all:

  • Starting the gluten free diet (the SAD version)
  • Finally sticking to the GFSAD diet
  • Switching to a cleaner diet
  • Removing foods I was sensitive to

My body decided to stop producing the little tools my body needed to breakdown my food, of any kind!

So, while most of my Celiac symptoms subsided, I still suffered from long visits with my friend john, and occasionally had some severe bloating and gas.

Thankfully, I was able to find a functional medicine practitioner to help me figure out that my lack of enzymes was because I had a condition called Exocrine Pancreatic Insufficiency, which is frequently linked to Celiac disease!

So, why didn’t a gluten free diet fix me?

I think you can easily answer this question now.

Gluten isn’t the only issue when it comes to Celiac disease.

I have an autoimmune disease.  If you have Celiac Disease – you do too!

So, I have to help my body as much as possible. I have to reduce my inflammation, but also make sure that the necessary inflammation is controlled properly, so my immune system KNOWS what to do when a real foreign invader strikes (viruses and bacteria – not food).

In order to do this, and to make a gluten-free diet actually fix me – I have to do everything I did and continue to make tweaks as my body changes.  It’s a continuous process, but I am learning more every year!

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millet, chickpea, and rice flours on wooden spoons with text overlay - Conquering Celiac Disease: Why a Gluten-Free Diet Didn't Fix Me

Comments 14

    1. Post
      Author

      Thanks for the shout out, Sheryl! The prevalence of autoimmune disease calls us to stick together and share our story – so glad you are spreading the word too!

  1. 1:30 am and I stumbled across your article. It’s late and I can’t sleep, anyone else dealing with this issue occasionally?
    I have known I had celiac for 5 years now. Your story sounds identical to mine. Things are better but not great.
    I have started to eliminate certain foods from my diet since it seems they are now culprits in my inflammation. Really hoping that I will be able to enjoy a few of the foods that are still on my safe list for a bit longer.
    Thanks again, for posting the article and all the great information. It truly takes a community working together towards the same goal, “Feeling normal,” to help keep things in perspective & continued improvement.

    1. Post
      Author

      Hi Michelle, I couldn’t have put it better myself. Anna and I have improved our help tremendously over the years using blogs, books, and anything we can get our hands on (good doctors included). I hope you are able to figure out the cause of your inflammation. If possible, get with a practitioner that will test for what might be causing your issues. I had a lot of success with gut microbiome testing, among others. Good luck and feel free to keep us posted/email us!

  2. This was an excellent article that I found on Pinterest. I am Italian as well and was diagnosed with celiac at age 66…many years of eating pasta and good italian bread. The switch to a GF diet definitely helped. I felt the effects immediately but there are still problems. I am much more careful now with cross contamination but it is a constant battle educating the people around me. My last tests showed I am improving but at a rate slower than expected and I have had some flare ups. I may need to start looking at other foods I eat. Thanks again.

    1. Post
      Author

      Ray! I’m so glad you were able to indulge for so long, but sorry to hear about your eventual diagnosis. If you are still having flares, doctors like Amy Myers claim that dairy can mimic gluten too – maybe something to look into. Whatever direction you decide to go, I hope you finally get relief from your symptoms.

  3. I too didn’t get 100% once diagnosed and following a GF diet (4 years now)………still having flare ups……….not sure what is doing it, which is depressing and annoying as all get out. Tired all the time and once again reunited more than I want to be with my friend John 😉 Thanks for at least letting me know I’m not the only one.

    1. Post
      Author

      Kathy, as saddened as I am by your struggle, I sure liked the way you put it! Chuckling as I write this… you are not the only one. Diet and gut healing go a long way though. Trying the AIP diet is never a bad place to start!

  4. Thank you so much for this read. My 6 year old daughter with the most beautiful understand soul was just diagnosied with Celiacs disease a year and half ago and it shocked my world!!! After many mistakes and alot of learning we are still going thru what looks like gulten symptoms but her tests come back good. I am just learning of other issues that can come along with this horrible disease! So this read was very informative for me and aided in some questions to ask her doctor!

    1. Post
      Author

      Hi Crystal, thank you for the comment. I’m sorry to hear about your daughter’s diagnosis. However, I’m pleased that you were able to take away something from my story. I hope that your doctor can help, but keep in mind that a lifestyle-based approach to autoimmune disease healing is still fairly new (in the conventional world). Therefore, many doctors are unfamiliar how to lean on diet, and lifestyle alteration, so we always encourage people to keep reading (like you are) and be your daughter’s top advocate. After all, you will be the making the changes and healing her – doctor’s are simply, awesome resources.

  5. Finally, someone speaks up about a gluten free not being the only answer. I was diagnosed with celiac in 2003 after over 20 years of suffering. Going gluten free improved my sysmptoms by about 90%. However, even cooking from scratch and limiting where I eat out most foods still pass through me too fast. My symptoms are inconsistent and have not succeeded at identifying the cause. Very frustrating.
    I REALLY hope that corn is not an issue for me. I love corn. Everything has corn in it just like gluten does.
    Have you had a blood test with results showing any oddities with your liver?

    1. Post
      Author

      Hi Jeannie! I’ll start off by saying… I love corn too. It never faded. Fortunately, I can have some in small quantities on occasion since it doesn’t have the same overall effect as something like gluten. However, regarding your liver question – for the most part I am pretty clear. Aside from some genetic SNPs that limit my liver’s detox effectiveness, nothing abnormal. I did test for LOW pancreatic enzymes which makes digesting my food a challenge. I have slowly added foods back in (after being on the AIP diet for 30+ days – highly recommend), and have begun digesting my food better. It is a slow process, and am still dialing things in. Hope this helps!

  6. Frank, thank you for posting your journey. I have not been diagnosed with Celiac, but pretty sure I have it. I am told I have non-Celiac gluten intolerance, but also have issues with pancreatic functioning. I have been gluten-free for 2 years, recently removed rice completely from my diet. Even a little rice flour causes an extreme flareup.
    I have found digestive enzymes that work for me, after several tries with different companies. I use Genius brand’s Digestion Optimizer. I have to take it after every meal.
    I have learned to drink only tea in the morning, to not introduce food to my stomach until around 11am, it keeps inflammation down for me.
    I see an acupuncturist and work with them and their herbal formulas to help heal my digestive system, which includes the liver, spleen, and pancreas.

    1. Post
      Author

      Hi, Cher. Thank you for an awesome comment! You are clearly listening to the cues and triggers that your body is presenting to you. I wouldn’t be surprised if you are feeling better than you have in a long time. I hope more people take your approach of improving and supporting all aspects of your health. Keep up the great work!!

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