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:
Disclaimer: I am not a doctor or medical professional. This site is for informational purposes only and does not provide medical advice.
Do 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?
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.
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.
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?
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:
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 work to relieve my Celiac symptoms?
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! And now, knowing what I know, I explain what I’d do if I was just diagnosed in my next post. Click to read: What I’d Do If I Was Just Diagnosed with Celiac Disease.
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Hey there! I’m Frank, co-founder of Healthy Habits Reset. My wife, Anna, and I have battled our respective autoimmune diseases for over a decade. We have fumbled through and eventually learned that REAL mental and physical healing requires you to be your own advocate, to think for yourself, and to determine what information works for YOU.
We created this blog to teach everyone how to use the resources and tools available to make the best personal decision surrounding any health, faith, and lifestyle choice.