From a Celiac Disease Foundation article titled “10 Things Every Gastroenterologist Should Know About Celiac Disease.” – What Biopsies Should Be Taken to Evaluate for Celiac Disease? Since celiac disease can be patchy, four biopsies should be taken from the second part of the duodenum, and two bulb biopsies taken at the 9 and 12-o’clock positions to assure that an adequate number of biopsies are done. Here’s the link if you want to share it with the gastro who is performing your procedure. Maybe you can email them ahead of time? Or email the office? https://celiac.org/2016/03/22/10-things-gastroenterologists-should-know-about-celiac-disease/

Not all support groups are bad. For example, I lead one. The gastro that previously consulted with our group sent patients to us because the dietitians in the area were so lacking in knowledge.

You’re right this is interesting. I’ve seen Crohn’s disease research that says it can cause small intestine villi flattening. Most people with Crohn’s or suspected Crohn’s can’t tolerate the FODMAPs or other starches in wheat. Also note that wheat is extremely high in glyphosate because they use it as a dessicant before harvesting wheat. Check out the MSDS sheet for glyphosate exposure for misinformation-free data about how that affects people.

If you have a lot of willpower, you can try the SCD diet (Specific Carbohydrate Diet) or GAPS (Gut and Psych Syndrome) Diet, both of which focus on rebuilding the intestinal mucosa.

In cancer they give you a drug for nausea called ondasetron (my mom had breast cancer), it lowers serotonin levels which stops the diarrhea / nausea. However, there is a reboud effect. Serotonin is basically an ‘upper’ so you might also feel muscle stiffness or spasms.

There’s a gut specific drug called dicyclomine that can stop diarrhea and also has a rebound effect. I use it to manage constipation because the rebound effect is perfect for helping me sleep at night without stomach gurgles waking me, and then evacuating in the morning.

Gluten Dude just posted a story from his daughter who conquered vomiting and D with a whole foods diet, you might like it. Doing that is far easier than either SCD or GAPS.

Be careful of bad advice from Facebook groups. MI Gluten Free Gal’s facebook group is excellent as is my local Raleigh Gluten Free Gang facebook group. Be careful of the national ones. Lots of misinformation, also be careful on reddit. A good test is to see if they like Gluten Free Watchdog’s website, and if they quote registered dieticians a lot.

In countries other than the USA, this process can be tricky. You’ll have to go to a capital city if you’re in a second world country where hospitals are iffy. Ask your local doctor where the experts are in gastroenterology. Every country has some, but you will have to travel. It’s better to travel than get bad advice. Northern Africa has a very high estimated occurrence of Celiac disease, but very few hospitals know how to deal with it, so especially there, find the right person.

Tel Aviv has a Celiac Center and a lot of research comes from Tunisia or Algeria, where people find it nearly impossible to follow the gluten free diet so they are studying what happens to them, and how they manage to live gluten free if they do manage it. Don’t wait to be evaluated and treated, long term exposure to gluten can cause life threatening internal bleeding and organ damage according to reports from N Africa. It’s far from a food preference, it’s survival.

Thank you, Margaret! I wish I had had that blood test first, too. It would have simplified things quite a bit. I know Celiac was not even considered when that first colonoscopy was performed, but it seems like that blood test should have been performed before going on a gluten free diet. I understand you aren’t a trained medical professional, but I have found I get much better advice from Celiac and Gluten sensitive folks who live this life.