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Karag

DH? that first appeared on lower legs

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I just got back from running some benadyl to my daughter at school after they called to say she has an itchy red hive like rash on her lower legs. By the time I got there I also found it on her elbows and she was starting to get bumps on her cheeks but those are not red or itchy yet.  She is not having problems breathing and I have called the local clinic who basically just said to wash her clothes with Dreft, apply benadryl, and bring her in after school if it looks worse.

I will try to figure out how to inlcude a picture. 

Back story is she has tested negative for celiac both via blood work and biopsy.  When she does eat something with gluten in it she is always bloated in 24hrs, tummy pains in 48hrs, and these crazy leg cramps in 72hrs.  The rash would have appeared about 72hrs after having something with gluten (we noticed a couple spots last night when her leg pain started but nothing like what I saw at school). Does this sounds like it could be DH or is it just really bad timing? TIA

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What effect does the benadryl have on it? I take it you mean a topical benadryl since you said "apply" benadryl.

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The bumps I get on my legs start out just red but turn into something like little blisters when I have anything with gluten in it. I have the other symptoms too, but the blisters on my legs appear even if I walk in the wheatgrass when it is about to seed or in aisles where gluten flour products have spilled. We never figured out why while I was a child since gluten allergies were all but unheard of back then.
It might be that she is just starting to become allergic over time due to the build up in her system. You will have to watch and see.

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Hopefully the pic shows up this time.  The top pic is of her arm, the bottom pic obviously her cheek, and the right pic is her leg.  My mother in law is a nurse and once I said it was on her face she said to take her into the clinic, so I did.  The on call doc thought her face and arms were not the same and unrelated to her legs, but they all look the same to me.  She said legs was a bite of some kind and her arms and face were keritosis pilaris (which I have and these look NOTHING like mine).  So far we have applied topically both benadryl and cortizone 10 which temporarily help but everything looks the same over 24hrs later.  This morning I can her oral benadryl but when I went to school at noon it didn't look any different.

Image.jpg

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So the on call doc thinks keratosis pilaris can just come up suddenly in a matter of hours.:angry: It's plugged hair follicles! Sheesh!!!!!:rolleyes:

Okay, this rash itches correct? Bilateral correct? Does she complain that it stings or burns? How long ago was she tested for celiac? Do you have the labs? Do you have the pathology report from the endoscopy? Can you post those here please? Make sure to include the reference ranges for the blood work.

How long have you had her gluten free? How old is she?

60% of the time those with dh test negative on the blood work. Those with dh also tend to have patchier damage in the gut. The small intestine, when flayed open & spread out, is the size of a tennis court. Biopsies can miss the "sweet spots" especially in the case of patchy damage & certainly if they don't take enough biopsies. The recommendation is 4-6. Also, depending on your daughters age, she just plain might not have had enough damage yet to show. Yes, it sucks. They want people to keep eating gluten & do more damage so they can see it. Great - NOT!

You need to find a derm knowledgable in dh and taking the biopsies for dh. If one has dh, that's the fastest, best, way to a dx. A dx of dh IS a dx of celiac disease and no further testing is needed. The downside is, just like for the celiac serum panel & the endoscopy, she needs to be eating gluten (gluten challenge) for a dh biopsy or risk a false negative.

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/

http://www.cureceliacdisease.org/faq/how-quickly-do-symptoms-arise-in-someone-with-dermatitis-herpetiformis-once-gluten-is-ingested/

http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/

http://www.cureceliacdisease.org/faq/how-is-dermatitis-herpetiformis-dh-diagnosed/

How the dh biopsy is done:

https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/

 

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Here is her full back story. At 5.5 (she turned 6 last month) I took her for her kindergarten physical and her ped doc noticed her bloating and suggested a food allergy. She was also below the 15% in both height and weight (I had always put that in the short genes in our family) and I also asked about these crazy painful leg cramps she gets. I thought they were all unrelated until I did a search for what food allergy would most likely cause bloating. After seeing that celiac matched several of her symptoms and other things her doc suggested going gluten free. I pushed for a blood test at that point. She went gluten free mid May and tests came back neg but we saw improvements. We only did mostly gluten-free, so cut obvious sources. In August I questioned if the tests could have been wrong or if we got a full panel because she was having great success with being gluten-free. He referred us to a specialist since it was beyond him. Specialist suggested the gluten challenge and then blood work, biopsies, and ultrasound. We live 3hrs from the specialist, they were okay with running the tests with her not back on gluten very long but I was able to push the date back so she was fully gluten for 6 weeks doing at least 2 slices of bread a day. All tests again came back negative and the only thing they found is she was severely constipated. Miralax for 3 weeks did not help the bloating and only seemed to help with the constipation a little bit. She went back to gluten-free right before thanksgiving. Thanksgiving was a failure and she had a tun of gluten and was miserable that night like I have never seen before. Friday night I made homemade Chinese and she insisted on having sweet n sour sauce. She was told their would be tummy consequences. Sure enough it was her normal 3 day pattern. Sunday she would have also had a prepackaged Rice Krispie treat (which doesn't list any gluten sources). The spots would have most likely showed up 24hrs after that. 
 
Most of the time she just says the spots itch but every so often she says they hurt. When I put topical Benadryl this morning she was saying that spot was burning.  They are bilateral (both ankles, calves, thighs, buttock, elbows, and face cheeks). This is the first time she has ever had anything like this. 
 
Her first bloodwork panel: 
Ttg ab iga <.5u/ml, ttg igg <.8u/ml, ag ab iga <.2 u/ml, ag ab igg <.7u/ml, iga 61mg/dL (iga range 27-195, other bloodwork negative if under 15)
 
Her second blood panel:
Dgp igg 2.8Eu/ml (<4.9), dgp iga .5Eu/ml (<6.1), ttg iga .1u/ml (<10.3), ema igg negative, total iga 57 (range 41-395)
 
Biopsies: 
All biopsies said "no significant hystopathalogical abnormalities" , two were described as squamous mucosa, and one as antral type mucosa. Said there were 13 fragments. 

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16 minutes ago, Jess8989 said:

I don't know if I'm celiac yet but I definitely have DH and I got a flare up from Rice Krispie treats made by hostess... Malt was in the ingredients.. 

Hi Jess8989,

Welcome to the forum! :)

If you have been diagnosed with DH, then you have celiac disease.  Only people with celiac disease get DH. 

To test for DH they take a small skin biopsy sample from the area next to a bump/lesion.   Then they test it for IgA antibodies.  The sample has to be from skin adjacent to but not directly on the lesion.

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