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Gluten challenge

Hannah Green
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Hannah Green Newbie
Hannah Green
Posted

I was told I had ibs for 15 years but finally my issues got so bad I had to take action. I have 6 family members (grandparents, aunts, father and brother) who have celiac disease. I was tested for the gene and I have it. My health insurance is terrible so I could not afford the endoscopy at the time so against some advice I cut all gluten out of my diet. Now I’ve been told I should do a gluten challenge so I can get further testing. I don’t want to because I get so so so Sick when I eat anything that was even processed in a facility with wheat. I’ve cut it out for about a year but now I’m more sensitive than I ever was. It seems I also can no longer drink alcohol either, 2 drinks makes me violently ill whether I drink at home or out. I used to drink plenty without the same issues but come to think of it I’ve always had the GI symptoms. I’ve been very concerned because my grandmothers celiac then turned into RA and my aunts turned into crohns and more recently cancer. I have a lot of ailments that have lasted even though I quit eating gluten. Nerve tingling and pain in my hands and feet, fatigue, joint and muscle aches and pains, brain fog, and when I’m CC it’s way more amplified and accompanied by migraine, diarrhea, and intestinal swelling. I don’t want to damage my body any more by doing a gluten challenge but I really need help, it’s been a year and just when I think the inflammation is starting to heal I get CC or something. I’ve turned to barely eating at all because I’m so paranoid, and it seems I can feel my body not having the nutrients I need. Have you done a gluten challenge, was it worth it? Do you recommend going to a place that can give you IV vitamin transfusions? I don’t think my body is absorbing any nutrients. 15 years I’m 28 now and I still don’t know what to do. I’m so broke because of covid I can’t afford a dietician or nutritionist or holistic person because my insurance won’t cover it and every doctor I talk to wants me to eat gluten or at least do an endoscopy and I can’t afford that either. 

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trents Grand Master
trents
Posted

Hannah, welcome to the forum!

Yes, you are up against a lot of barriers to better health right now.

When you are indeed eating gluten free and have not experienced CC for a while, do many of your symptoms improve?

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    • PixieSticks
      Working in a kitchen with gluten?

      By PixieSticks · Posted

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      By BoiseNic · Posted

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
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      Feeling ill

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      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
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