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Would You Gluten Trial To Biopsy Dh And Get Diagnosis?

CrunchyChristianMama

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CrunchyChristianMama Newbie
CrunchyChristianMama
Posted

We are in the process of getting a diagnosis of Celiac for my 2.5 year old. She started breaking out in a pretty classic DH rash at about 18 months when exposed to high quantities of gluten. Now she will break out in it from a single goldfish cracker.

We absolutely will not put her on gluten for weeks and weeks to do the blood test of gut biopsy. She's a wreck on gluten besides just the rash, and there's no way we could do that to her (or us!). She has rested negative for all allergies and is positive for the gene.

Our gastro. said that we could feed her gluten for a couple days though and then they could biopsy the rash and they would give us the Celiac diagnosis that way. It would help to have the for sure diagnosis only because we have some skeptics in the family who are still holding out hope that it's something else. :angry:

Her rash usually clears up within a few days of exposure when it's just a single, tiny amount of gluten. I don't know what will happen if we feed it to her for a couple days.

She's so tiny, but it would be so nice to just have the diagnosis stage done with and not have to mess with it again down the road.

Thoughts?

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mushroom Proficient
mushroom
Posted

Yes, I think if it were just for a day or two, and if it would help make her safe around other family members for the rest of her life, I think I would do it. It will be hard on you and her, but she has her whole life ahead of her and the skeptics in the family could not argue about it. It's sad how much in denial people can be, but it would be nice to know you could leave her with gran and count on her not being glutened. :):o

cassP Contributor
cassP
Posted

i agree- if it's just a couple of days, for a DH biopsy- it might be worth it.

itchy Rookie
itchy
Posted

Best wishes. I hope that you are able to get a positive diagnosis.

Many of us have experienced years of negative tests, even though it is obvious we have DH based on skin symptoms and our own experiences with elimination diet.

A positive test is a great help because accessing the medical system will be easier if you have it.

A negative test will strengthen the skeptics. Hang in there if you are convinced you are right about the DH.

ravenwoodglass Mentor
ravenwoodglass
Posted

Growing up with DH is awful, mine was misdiagnosed as 'poison ivy in my blood'.

Just make sure that the derm that does the biopsy does it correctly. They do not biopsy the rash but the area beside it and do make sure that they are looking for DH specifically because the lab needs to do a special test for it. I don't know if just a couple days on gluten will be enough for a positive biopsy but it is worth a shot.

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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
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      Small Bowel Resection 12 inches

      By trents · Posted

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