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Son With Dh Dx Should I Bother With Testing?

amberskids

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amberskids Newbie
amberskids
Posted

My son was recently diagnosed with Dermititis Herpetiformis at just over 2 yrs of age and I'm not interested in all the blood work and invasive testing that will likely go on. My doctor agrees that it's not necessary as long as a gluten-free diet is helping him. I just don't know if it's something I should pursue later or not. However, I'm seeing so many that have false negatives and I certainly wouldn't want to voluntarily put him BACK on gluten just to get positive results... He's been gluten free for exactly a week and two days and for the first time since it presented and was misdiagnosed as ONLY eczema (he has eczema as well, but the DH recently became really pervasive and was easier to Dx I guess) since he was roughly 3 mos, but got really bad when he started eating solids at 11 mos. (he was exclusively breastfed before that) Chronic diarrhea 5-7 times per day, is now down to 3, he is finally sleeping through most nights -- he was up 3 and 4 times a night before itching constantly despite being on Zyrtec, Benadryl and Ibuprofen. he is also dairy free for now, since that seems to upset his system too. Anyway is a formal Dx really worth going back to that? I wouldn't think so, someone would really have to convince me that it's absolutely necessary I guess.

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Skylark Collaborator
Skylark
Posted

A diagnosis of DH is a celiac diagnosis. Ideally they would have biopsied skin next to the blisters and looked for antibodies, but if he has the classic extremely itchy blistered rash that gets better off gluten you probably have all the information you need.

Di2011 Enthusiast
Di2011
Posted

Has you doctor noted on your medical records that diagnosis of DH? If so then I personally would take that as being an official diagnosis. Get a copy of those records for future reference - for him as well as yourself.

amberskids Newbie
amberskids
Posted
  • Author

Has you doctor noted on your medical records that diagnosis of DH? If so then I personally would take that as being an official diagnosis. Get a copy of those records for future reference - for him as well as yourself.

I didn't notice her taking any notes about it, but she could have done it after we left, I'll ask her.

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