DH & Negative Blood Work

westphilly · Joined: 28 Jan 2008 Posts: 8 Location: Philadelphia, PA

Hi folks --

Thought I'd give an update just in case anyone is curious. My symptoms have calmed down slightly but haven't gone away (again, who knows why -- I can't identify anything that I've changed recently -- we're going on 7 weeks of constant itch now, by far the longest outbreak I've ever had).

I finally went back to the dermatologist who initially diagnosed me with eczema a year ago, and she told me it was eczema again, and her only solution was to give me more of the steroids that I had already told her weren't really working. I didn't specifically bring up DH, but made a few mentions of familial wheat intolerance, which she completely blew off. I told her I didn't see the point of using more steroids, and so here I am in the exact same position I was in before the appointment (itchy, off medication, with an eczema diagnosis, and no one has any idea what my triggers are).

So, I'm going back to my PCP (whom I trust) to get her input on the situation, and I've scheduled another derm appointment with the derm department at a major teaching hospital here in Philly to get second opinion (both in early March). We'll see what happens!

ostrich · Joined: 30 Mar 2006 Posts: 5404 Location: Nebraska

I'm sorry West. Sad

Sounds like your dermatologist and my dermatologist would get along great. She was all over the steroids too. Going to a teaching hospital is a great idea! I might look into that myself. Please keep us updated.

Have you tried the cold compresses? Do they help? You might be reacting to something other than gluten. Have you had an allergy test done? Or have you tried keeping a food journal?
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westphilly · Joined: 28 Jan 2008 Posts: 8 Location: Philadelphia, PA

I had an allergist do a pinprick test, and I'm basically not allergic to much of anything (I'm very mildly allergic to dust mites and mold, but no food, animal, plant allergies). That (plus the fact that I've never had allergies, hay fever, or asthma, even as a kid) is why I'm skeptical of an adult-onset eczema diagnosis, and why I'm so confused about what's triggering this reaction.

The cold compresses do help, thanks! I've also found that wearing clothes during the day that make it harder to scratch myself helps, too (wearing tights and tall boots as opposed to pants and socks, for example -- they make it so that I can't really do damage to myself while I'm in public). I just started a food diary, too!

This derm that I was going to is a solo practitioner who does a lot of cosmetic stuff for fairly well-to-do patients. I figured that I might have better luck if I go to a dermatology office where they aren't doing Botox on-site -- I figure they're probably exposed to more unusual conditions on a regular basis [as opposed to spending most of their day surrounded by healthy people wanting elective procedures] and will be better able to say once and for all what's going on.

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 2131 Location: Maine

Getting another opinion seems like a good idea. I hope someone has an answer for you soon.

I've still had one area on my leg that has been itching, though mostly at night when the leg gets warm. Thankfully, it's not itching 24/7 anymore. I found something that has been helping that. Before bed I've been putting on aloe vera gel, and have not been itching at night at all, unless I forget it. I found it in a tube. The name of it is aloe99. It might be worth trying, as long as you're not allergic to aloe vera.

Keep us posted.

Steph

ostrich · Joined: 30 Mar 2006 Posts: 5404 Location: Nebraska

rpf1007 · Joined: 13 Feb 2008 Posts: 959 Location: Toronto, Canada

I went to a dermatologist when i continued to get blisters on my elbows and knees. At the time, I only had one tiny blister but I explained how they came and went....how itchy my skin was etc...and he said DH right away and was almost positive about it. He did a biopsy to be sure and he was right. Ironically now that I am GF for about 4 weeks, all my stomach issues are resolving too!
I went to a dermatologist at a university medical center. I hope your second opinion helps!!!

aklap · Joined: 02 Oct 2004 Posts: 12530 Location: WI, USA

Hi RPF,

Welcome to the board! Glad to hear you got a Derm that picked up on that. It's not surprising to hear that your stomach issues are disappearing too. BONUS! Cool

Keep up the good work.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

smalltownslackermom · Posted: Fri Jan 01, 2010 12:13 pm Post subject: Re: DH & Negative Blood Work

momoffour · Joined: 21 Feb 2010 Posts: 126 Location: va

i am new to the forum and have been looking for answers for years myself about the rash i got when i was pregnant with my second child 7 years ago. this rash has lasted ever since although it isn't as bad as before. mine started as a little bump that itched terrible right below my knee. before i knew it i had it covering the backs of my thighs,one shin bone,in my groin, my butt,and my entire stomach. now it is on my stomach and sometimes my shin. i never put the facts together until searching this site where i saw pics that looked like what i've had.
i have had the celiac pannel done and it had a neggative result. i have seen 5 doctors including a dermatologist who said i had ring worm. the four others said that it wasn't ring worm and didn't understand the dermatologist findings. i am so irrated by all this. i am seriously thinking about going on the gf diet and putting all my kids on it too because they have other symptoms of celiac.
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lots to do and not enogh time!!!!!

aklap · Joined: 02 Oct 2004 Posts: 12530 Location: WI, USA

Hi Mom,

Welcome to the board!

Have you ever been tested for DH? It's common for patients with DH to test negative for CD because they don't have intestinal damage. However, if they take a skin biopsy (adjacent to a lesion), it will test positive for DH. A positive test for DH automatically gives a you diagnosis of celiac disease since it the skin manifestation of the disease (instead of intestinal manifestation).

Often times dermatologists are unfamiliar with DH because they don't know much about it and thus aren't looking for it.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

momoffour · Joined: 21 Feb 2010 Posts: 126 Location: va

i'm not sure he did that test. it was quite some time ago and he just assumed i had ring worm and sent me on my way. i was so unhappy i cried the hour and a half drive home. at that time i hadn't even heard of celiac and he wouldn't have cared if i had asked. the visit was three minutes tops and that was the end of it in his book. that was two years into the rash and here we are five later still no answers. i guess i could see another dermatologist but i think i've waited long enough and am just going to go gluten free and see what happens. thanks for the tip though.
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lots to do and not enogh time!!!!!