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Can Dh Be Misdiagnosed If Biopsy Is Done On The Actual Lesion?


sarahleevillar

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sarahleevillar Newbie

Can anyone help me figure out if what I have is Celiac disease?

2-3 months ago in the midst of a move and a whole sleuth of stress, I broke out with this intensely itchy rash on both my knees and my elbows. Didn't think much of it for a while until it simply wouldn't go away AND would keep me up at night. Topical creams wouldn't work. Nothing worked. I realized that I had had it for well over a month at this point.

I set a dr.'s appt. only for the rash to disappear the week before I went in (of course). Well, the morning of the appt., I woke up to a new rash on the inside of my elbow, just on one side this time. Since the old rash was now only scars, the dr. took a skin biopsy of the new rash and got it directly off of one of the lesions (as I've been reading, could this mess with the results?). The results to the test came back as this, "It is highly unlikely that this is DH. It must be an allergic reaction to medication." That's it. Problem is, I was not taking ANY medication during this time. I'm breastfeeding our baby and am very cautious about taking medication, so this left me confused and rather frustrated. Can anyone speak to this? I feel like I spent $200 for nothing! I tried calling back to get a better answer, all to no avail.

Along with the rash, I have had episodes of severe diarrhea that would last for a few days at a time. It is also a very normal part of my life to feel like my insides are fermenting...probably 5 out of 7 days a week. Is this normal with Celiac Disease or DH? I know that I need to get blood tests done, but can't really afford them right now. Any insight?

I have a feeling that there is some sort of gluten sensitivity/intolerance in my system, I just feel really silly going on a completely gluten-free diet without having an actual diagnosis. But also, I'm really sick of feeling this way. Plus, my skin has all these little bumps all over. They don't itch or anything, it's just now spreading from what used to just be on the backsides of my arms to both of my legs. Could all this be related?


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Welcome to the forum, sarahlee. Your hunch is correct--the dermatologist did not know what he was doing. The biopsy should be taken immediately adjacent to the suspected DH lesion, not of the lesion itself. You would think dermatologists would know this by now!!!! :( And as you seem to know, the lesion must be an active lesion, not one that is healing, so when you get another one you need an immediate appointment for biopsy in the proper place. It is so frustrating, isn't it???

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      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
    • Scott Adams
      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
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