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Skin biopsy for DH


Gael

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Gael Apprentice

Hi all,

i saw a dermatologist today because I have had an itchy rash all over my body for a few months. I went off gluten 11 days ago to see if it would help reduce itching. Long story short in the past 10 days I am still itchy with new rashes breaking out since going gluten-free. The derm took a skin biopsy today to check for DH, but my question is “how long does gluten stay in the body after stopping?”. I am worried that because I am off gluten for over a week now that I will get a false negative. The dermatologist was pretty dismissive. He does not think this DH despite me explaining that basically everyone in my family as celiacs disease. He said he could still do a biopsy and would let me know if anything comes up. For now he’s just prescribed more steroid cream. I can’t do a endoscopy right now because I am 4-6 weeks pregnant. Itchiness predates pregnancy. Any insight about how long gluten sticks around in the body would be great! Thank you!


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Gael Apprentice

Anybody out there know how long gluten stays in the body after you stop eating it?

Scott Adams Grand Master

I've not seen any studies done on that question, but do know from years of reading posts here that it varies greatly from person to person, and those with DH seem to have the longest recovery times, even from very tiny amounts of gluten. For those with gastro symptoms recovery seems to take days. For those with neurological or DH symptoms it can take weeks. Whether or not gluten is still actually in the body at that point is doubtful to me, but it has triggered an immune reaction that can continue for quite a while in some people.

Gael Apprentice
On 11/23/2021 at 4:56 PM, Scott Adams said:

I've not seen any studies done on that question, but do know from years of reading posts here that it varies greatly from person to person, and those with DH seem to have the longest recovery times, even from very tiny amounts of gluten. For those with gastro symptoms recovery seems to take days. For those with neurological or DH symptoms it can take weeks. Whether or not gluten is still actually in the body at that point is doubtful to me, but it has triggered an immune reaction that can continue for quite a while in some people.

Thanks for your response! Basically, the dermatologist told me if there were still lesions, he could perform the DH biopsy. I just wanted to see if anyone had heard anything to the contrary if one had stopped gluten before the skin biopsy! Thanks again for your reply

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    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • Scott Adams
      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
    • trents
      Sometimes that is the case but what is curious to me is the remark by your physician about being "borderline". I assume he was referring to the total IGA score but it just seems like an irrelevant remark when it is on the high side rather than being deficient.
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