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How long of a gluten challenge for Endoscopy?


akacase

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akacase Newbie

Hi Folks,

Type 1 diabetic here; I got diagnosed almost 8 years ago and have been pretty strict gluten-free since, but since reviewing labs from that time. In the last few years, my doctor said the test wasn't conclusive (blood test) as my tTG-IgA was 4 (reference range 4-10 is a weak positive from our lab); all other values were normal. I had no symptoms and still don't. If I accidentally eat something with gluten, all celiac panels yearly show up as unfavorable (eating gluten-free). I have the gene for celiac, and my mother and grandmother both have the disease. I had an endoscopy that was for a gallbladder-related issue (which ended in a cholecystectomy), and that was over two years ago. The Dr. had me do a gluten challenge for only a week to state that he didn't believe I was celiac, which I didn't think, so I continued with gluten-free, but my GP would like a conclusive diagnosis, which I'm OK with, but I'd like some advice on how long to eat gluten for? How much? Is sourdough and naturally leavened bread OK? Below is the original comment from my biopsy, which was a 7-day challenge, where I ate at least two pieces of toast every morning for breakfast, sometimes a bit more throughout the day:

Quote

On part A, the duodenal biopsy shows normal villous architecture and focal mild increase in intraepithelial lymphocytes. The findings are of unclear clinical significance and may be incidental. The possibility of celiac disease, however, cannot entirely be excluded. Correlation with clinical and serologic findings is necessary. Other considerations that can present with similar histologic findings include dermatitis herpetiformis, systemic autoimmune/immunodeficiency disorders, drugs (particularly NSAIDs), inflammatory bowel disease, H. pylori gastritis, peptic duodenitis, infections, tropical sprue, and spontaneous bacterial overgrowth.

 

After that test, it did indeed turn out that I had a massive H. Pylori infection, as well as a shot gallbladder, which could corroborate the findings. I guess I'm asking how I should proceed with this challenge. I'd like to know for sure. My other siblings do not have celiac, but they also are Type 1 (yay). It's not like I want to go out and feast on gluten; I'm over it, but it would be nice not to worry about eating out.

If I do the test, there's a wonderful local bakery that makes naturally-leavened bread, which I'd like to eat mostly, but I'm scared of a negative screen because of sourdough. Is around three weeks fine? My new endoscopy is on January 2nd.


Thanks for reading!


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trents Grand Master
(edited)

Welcome to the forum, @akacase!

Recommendations from the medical community with regard to the gluten challenge are in flux lately and you will see a range of advice with regard to how much gluten and for how long. The general consensus, however, is that historically, guidelines were too relaxed and the trend in recommendations is for eating a higher amount of gluten daily over a shorter amount of time. Here is what I would advise as I have interacted with various guidelines: at least 10g of gluten daily for at least four weeks leading up to the day of the test, either the serum antibody blood draw or the endoscopy/biopsy. 10g of gluten is the amount in approximately 4-6 slices of wheat bread. Sourdough bread is much lower in gluten so that should not be used for a gluten challenge.

By the way, you speak of having "the celiac gene". There are actually two main genes (HLDQ2 and HLDQ8) and their variants that have been associated with the potential to develop active celiac disease.

You might consider also that instead of having celiac disease you have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

Edited by trents
Scott Adams Grand Master

I agree with @trents on the sourdough bread--regular bread should be used, or Saltine crackers, etc.

 

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      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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