Most Cases of Non-Responsive Celiac Disease Due to Ongoing Gluten Consumption

Nice to see that researchers are trying to examine the problems with unresolved celiac issues more.

I was curious what conditions had been misdiagnosed as celiac disease. Many of the misdiagnosis made sense, but it was disappointing to see researchers also using what, to my understanding, is faulty testing methodology. These suspected non-celiacs were given a short 2 week gluten trial and then a biopsy to see if there was any damage. No damage was considered a negative test for celiac.

Every celiac research center I've seen who discusses how long to do a gluten trial recommends a significantly longer period of time, to avoid a false negative. It makes me wonder why the study picked the length of time they did. I know they used other variables as well, but it was still odd.

The drawing of gluten entering the intestinal system from the mouth needs to be modified to illustrate airborne gluten entering the oral cavity after being breathed in through the nose, and then descending into the intestine. Once it is documented that NRCD occurs due to this additional source of entry, those whose symptoms continue may improve after avoiding environments with ambient gluten and those who might otherwise die might live.

I found that with a prolonged misdiagnosis of digestive issues and not being diagnosed with celiac until 37 years old, I developed a lot of food intolerances, especially high-protein foods: peanuts, dairy, beef, eggs etc. After eliminating those foods, as well as gluten, my symptoms decreased 80%.

I was recently diagnosed with celiac disease and have found my self changing my diet tremendously. I have been relying on other cultures and their foods to get me through. I have even completed additional research, and now I am practicing gluten-free and vegetarian diet. I feel better, but I still have my not-so-good days. It is really good that there has been more attention devoted to celiac disease and I hope there will be a cure soon.

There is a theory out there that there is no such thing as refractory celiac disease, just higher sensitivity levels. My sensitivity level has increased enormously over the past 5 years. I now have to eat only non-processed foods. I react to foods tested at 20ppm and probably lower. It really makes me wish the threshold for gluten-free products was more stringent than what is proposed by the FDA. There is also a disclaimer on this site's Super Sensitives section of the forum that is particularly offensive to those wrestling with this problem. The authors of that disclaimer may have to eat their words one day soon.

The drawing of gluten entering the intestinal system from the mouth needs to be modified to illustrate airborne gluten entering the oral cavity after being breathed in through the nose, and then descending into the intestine. Once it is documented that NRCD occurs due to this additional source of entry, those whose symptoms continue may improve after avoiding environments with ambient gluten and those who might otherwise die might live.

Amen! Amen! Amen! but who will believe this unless they experience it or live with someone who is this sensitive?

The drawing of gluten entering the intestinal system from the mouth needs to be modified to illustrate airborne gluten entering the oral cavity after being breathed in through the nose, and then descending into the intestine. Once it is documented that NRCD occurs due to this additional source of entry, those whose symptoms continue may improve after avoiding environments with ambient gluten and those who might otherwise die might live.

Thank you very much for this comment. I wondered about breathing in gluten because the smell of baking wheat bread initially makes my nose sting. My husband will have to make his own wheat bread somewhere other than the kitchen from now on.