For the most part, I often feel like celiac disease is the wild west. Science knows a lot about celiac disease. It is the only autoimmune disease with a known trigger – gluten. When gluten is removed from the diet, all is supposed to be okay. But many people diagnosed with celiac don’t get to “healthy”.

This inability to get to “healthy” is where the confusion comes in. There is no pill, shot, or other medical intervention that is currently available to help. Most doctors believe that simply eating a gluten free diet should be enough for celiac disease. Even at diagnosis, they simply say you have celiac, start a gluten free diet, and see me in three months for repeat testing to see if you are on the right path.

Gluten free or not

I think scientists don’t understand what the social and emotional impacts are of this disease. I think they think – either someone eats gluten free or not.

But I think there is a ton of gray area and no clearly defined rules. For example, Corona beer says their beer tests below 20ppm for gluten. So, one person drinking Corona would say that they are 100% gluten free. This person would tell their doctor they are 100% gluten free. Another person watching someone drinking the Corona would say that person isn’t 100% gluten free.

Furthermore, when I say I’m having ongoing celiac symptoms are my symptoms related to celiac or something else? I’ve been very up front about my ongoing gastrointestinal issues. Are they celiac related or is it something else? Is it because I’m getting low levels of gluten exposure? If it is low levels of gluten exposure, how can we determine what levels I’m getting? Because my low levels of gluten exposure are not making my immune system react, is it enough to cause damage in my small intestine?

When the doctor asks me if I’m eating a gluten free diet, my typical response is yes. Yes, I’m eating gluten free, but I’m certain I’m inadvertently getting gluten into my diet. Unless I never eat out or eat whole foods 100% of the time, I will ingest gluten.

Symptom mitigation

Friends with children with ADHD were suggested to medicate their children because if they didn’t, the children would find a way to self-medicate. Children with ADHD often use drugs or alcohol to cope with their ADHD symptoms. Doctors never ask me what I do to mitigate the symptoms of celiac disease. I think they should. Or what do I do if I think I got glutened?

I think these questions should be asked by every doctor to every celiac patient to understand if they are engaging in any risky or dangerous behaviors. If I have diarrhea, do I take something to stop it? If I’m constipated, how do I try to fix it? Have I tried a fast to reset my immune system? Have I ever taken activated charcoal?

Conclusion

There is so much to this. Celiac is a HUGE disease with little or no real research about how people live with this disease. Scientist, doctors, and nutrition professionals need to more clearly understand what it is like to live with this disease.

They need to know what it feels like for the newly diagnosed celiac to cry in the grocery store aisle because it is so confusing. Understanding what it means to not eat your best friend’s wedding cake or your child’s birthday cake because it contains gluten. Declining dinner invitations because you don’t want to have the one millionth discussion about why you cannot eat at this restaurant or that. How it feels to wake up in a cold sweat after dreaming about eating gluten.

We just need more.

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