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PCP was convinced but suggested biopsy anyway


Vegasgirl2007

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Vegasgirl2007 Newbie

My PCP ran a CBC, thyroid test, and food allergy panel in addition to a celiac panel consisting of Gliadin AB, Deamid. IgG, Gliadin AB, Deamid. IgA, TTG IgG, and TTG IgA. Everything was completely normal except the celiac panel (he said he was truly shocked at the fact that the numbers not only indicated positive results but all were actually off the charts with both IgA tests over 10x higher than the minimum positive thresholds.) He said that really the only reason to go through with the biopsy was to set a baseline for the future, but he did give a referral to a gastroenterologist. I decided to try to stop eating gluten for a few days to see if I noticed ANY difference because I absolutely love every gluten filled creation you can come up with (ok a bit of an exaggeration because I am a picky eater, but I truly felt that I would starve without it!). I was skeptical but after 3 days, the headache that I have had for months went away and I could feel the muscles in my back and neck trying to start to relax-even muscle relaxers for a month barely achieved that. After about 2 weeks, the itchy, blistering rash on my knees and elbows (which I had on and off, mostly on depending on diet at the time, for about 10 years) completely stopped itching and has almost completely gone away. The gastroenterologist seemed to think that I was faking it because it is a "fad", he actually hadn't seen the results of the bloodwork and kind of changed his attitude towards me once he did. I scheduled the biopsy for next Wednesday, but that will put me at about 3.5 weeks gluten free. I actually feel somewhat better although there is still a long way to go, but I am concerned that I may have gone off gluten for too long, especially given his attitude towards me and what I have read about false negatives due to sampling techniques during biopsies. Is it worth eating gluten for the next week or is it too late? I have a doctor's note for work/meeting meals already and even though I was extremely doubtful, I do feel better.


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    • trents
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    • Judy M
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    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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