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ArtGirl

Can You Have Dh As A Child, But Not As An Adult?

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I just recently met a non-forum, real live person with DH. She had eaten something contaminated at a restaurant and her only symptom was a small red dot on her elbow that itched a lot.

I remember when I was a child I would get these itchy dots on my elbows. I'd almost forgotten about this until I saw her's. I've mostly had GI symptoms for the last 40 years. (am only 1-1/2 yrs gluten free).

So, I was wondering if I could have had DH as a child, but then the symptoms changed to non-DH. ???

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I'm sure you can. My symptoms of DH have changed. When I was little, I used to get bumps like that on my elbows, knees, back, and forearms. I still occasionally get them on the forearms but it seems now that I only get it on my hands and in a sort of different form. Probably because the rest of my body is generally covered in some other form of hives or rash. :P

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Interesting. In the year before I was diagnosed, when a lot of my symptoms either got worse, or showed up for the first time, I would get single "blisters" along the sides of my fingers.

They itched like crazy--would show up out of nowhere, and go away. Around that time, I also had red "spots" that would erupt on the inside of my arms--again out of nowhere.

Since I've been gluten-free (2 years), neither of these things have happened again.

I don't know a lot about DH--I only learned about it after I was diagnosed and read about it here. I wonder if it can manifest itself in individual spots? Hopefully, someone more knowledgable in DH will weigh in on this.

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I get those spots all the time - side of fingers, top of foot, knee (but only a few) when I am 'glutened' IMMEDIATELY. (Some speculate it's a DQ1 gene thing.. and I'm probably DQ1/DQ1). As a child I had them cover both of the tops of my feet. I have found my Allegra for outdoor allergies actually lessens the itchiness of those spots but doesn't stop them. After the spots, then I'll get a very mild form of the D for a few days then it will go away. Of course.. that's 3-6 days of effects every time I get glutened. I know how much gluten it takes to react because I tried the low gluten communion host (am Catholic) which supposedly is only 0.01% gluten.. and I reacted for 6 days and that was 37 micrograms of it!!!! :( So anyways I don't go out and eat and bring all my own lunches and we are home schooling our children. My oldest son gets a rash that looks EXACTLY like DH all over his buttocks - but again only with Gluten and then for months afterwards.

I showed those spots to a dermatologist at UVA (supposedly an expert) and he said "That's not DH - I can tell from just looking at it - that's just uticaria.. came back if you get something real". Of course I don't go to UVA anymore because the experts there don't know anything and will only say you have 'celiac' or 'dh' if you have a REALLY bad case of it. I know it's not something else because I tried all the ointments and creams (INCLUDING the high power corticosteroid the UVA derm. gave me) and NOTHING stops them, gets rid of them, etc.... except.. of course.. GOING gluten-free!!! :)

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I get those bumps on my finger too, they are red and itchy and they hurt. they pop out of nowhere and then diappear, actually I had one this morning. Maybe I am still getting glutened?? I am only on day 5 gluten free and not really sure what I could be eating that is doing it. I am reading labels, maybe not good enough.

Also my son was getting rashes on his bum, and I took him off wheat, dairy and he was using a medicated cream...after a few weeks the rash diappeared and I then introducted oatmeal a few days ago and noticed the rash on his bumb is back (he is 11.5 months old). Interesting.

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I do agree that the presentation can change. As a child my extremeties were covered in oozing blisters that left scars still visible 40 years later. It was thought to be poison ivy and I went through 7 years of the most painful allergy injections possible with no relief other than when I would get a short course of prednisone. The blisters lessened in my teens but I then had awful cystic acne and when the pimples would pop the resulting fluid would seem to burn my skin and spread the pimples. This later moved to my scalp and back and looked much more like herpes leisons. It took quite awhile for my skin to become clear gluten free, I found out that it takes a while for the antibodies to leave the skin, for the first year just a little CC would cause a nasty outbreak but now, 5 years in, I get usually just one sore, it of course will take a month or so to heal but it is really tiny compared to what I used to go through.

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I appreciate those who replied. I'm sensing that even though the skin problems lessened later in life, that if you had rashes, etc., as a child, these continued to be present as an adult and only cleared up when you ceased eating gluten.

I guess what I had wasn't DH but probably some kind of contact allergy. The spots I had on my elbows never spread or got blistery.

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Hello, I have just set up a new account on Celiac.com so I could reply to this message.

I was very intrigued by your post, and I have a weird story but I'm currently in the "not sure what's going on" stage...

Well anyway, here's the deal:

I'm a 44 year old woman, and when I was 11-15, I had the most horrible rash on my forearms - painful, itchy and seemingly permanent. Nobody knew what it was and I was even sent home a couple times from school because they thought it was scabies. The doctor kept giving me corticosteroid creams, but that didn't help and he didn't really have any ideas. Was it stress? Household chemicals? Nobody knew.

At around age 16, the rash, which had consumed me for years, suddenly disappeared, and then (I always said it was a trade-in) I became chronically congested -- sinusitis -- for no particular reason. All I knew was that I had to take Actifed, and then later when Sudafed became available, I switched to that. Now, I'm up to 120mg/Sudafed every four hours or else I can't breathe very well and I go into a fog. I'm also seriously anemic in general (my regular doctor never really makes a big deal of it anymore because he seems to think it's just my "normal" even though I'm really tired all the time), and my first pregnancy took a seriously dangerous toll on me because of the anemia.

Fast Forward to March 2007. I'm studying music theory at my local community college, and my teacher is "gluten intolerant" (first I've ever heard of such a thing) -- his mother was a co-founder of "The Gluten Intolerance Group of North America" (www.gluten.com), back in the early 1970's. He very, very occasionally gets accidentally glutened, and when he does, we have to miss a day of school since he gets desperately ill from those accidental glutenings, even the most microscopic amounts.

Someone in class found out that his birthday is in March so some of us decided to figure out a way to celebrate it, without the traditional birthday cake. My job was to find out about this weird, rare disease, so I went online to read about it.

Well, guess what? One thing led to another and pretty soon I'm wondering if I have some form of gluten intolerance --- One of the huge clues was the connection between that and DH, the rash which looks so much (from the pictures I saw) like what I had, that it made me feel itchy just thinking about it!!! It literally made me cry! And then, reading all the stuff about anemia, and chronic sinus issues, and a whole bunch of other seemingly unrelated issues, I felt like I'd been hit over the head with the obvious.

By mid-June I'd been to see Dr. Stephen Wangen in Seattle for food allergy testing, and a gluten panel. The DH connection was so clear, it just had to be! By the end of June I seemed to have the answer: Negative for gluten, positive for other foods like dairy, eggs, etc. I've spent the entire summer doing my best to avoid all the trigger foods but nothing's really changed. I still depend on Sudafed for clear breathing. But I still feel there's a gluten connection. So... I asked Dr. Wangen about trying a gluten-free diet anyway, and he encouraged me to do so, very wholeheartedly, saying that the blood tests only test a few antibodies, and the results can be wrong once in a while. He's really very supportive.

It's now been 10 days. This morning, the most bizarre thing happened! I broke out in a rash, just on my forearms! Burning itching! ACK! I had a flashback, a bad trip, right back into my childhood!

It persisted through half a day, and then has now begun to recede. So now I'm wondering if it's my body reacting to the gluten-free diet, like it's in detox mode or something! Bizarre! But like I said, I'm still not sure about the gluten connection. But then again...!

I feel really sorry for people who have had this their whole lives, but I'm glad that the connection has been made between DH and celiac disease, and that there's medicine available.

Thanks for reading this.

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tBar

Welcome to the forum.

Your story is VERY INTERESTING.

Although the itchy spots on my elbows never returned, I have been plagued with dry skin for all my adult life (and dry itchy eyes, and dry nose to the point of spontaneous bleeding, and dry mouth and throat). All but the dry skin mostly cleared up going gluten-free. However, I'm still dealing with itchy skin, but that appears to be other food allergies.

The dry skin, mouth, eyes, ets., I've attributed to Sjogren's Syndrome (self-diagnosed), an autoimmune disease affecting the moisture secreting glands which they have found has a direct connection to a reaction to wheat.

So, I'm thinking that perhaps I did have a mild outbreak of DH as a child, which then switched to other manifestations such as Sjogren's, and the ever popular IBS!. Also when I was a child I was taken to see the doctor because of "growing pains" - as an adult the aches and pains were diagnosed as fibromyalgia.

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ArtGirl,

I have not been on the boards much lately due to being busy, but when I do stop by I check the DH forum, since I have it.

I just wanted to raise my hand and say Me! I had DH and stomach pain for a couple of years as a child, and it went away for years and years, only to return.

Two decades silent, to be precise. During the "silent" time, I still think I had problems with gluten, but my symptoms were more autoimmune in nature - endometriosis, mouth sores, acne, slow healing, antiphospholipid antibodies, fatigue, etc., eventually sub-fertility and miscarriages. Many little things that seemed unrelated, but they added up to me feeling like I wasn't as healthy as other people.

Several months after the birth of my third son (I was able to have 3 babies out of 6 pregnancies), I think my silent Celiac Disease got triggered. Out of hiding came more mouth sores (really awful ones in clusters this time), painless weight loss, and my old friend the elbow rash. Oh, and cognitive problems (brain fog), clumsiness, stumbling around like a drunken sailor if I had to walk in middle of the night, misjudging door frames so as to toe-stub, etc. (possibly the beginning of gluten ataxia). Thank GOD these things are all gone.

You mentioned some Sjogren's symptoms. It's funny, the first couple of weeks I went gluten free (so dramatic), I developed a DEFINITE and temporary problem with dry mouth and dry eyes. Like the previous poster's quirky rash outbreak, this seemed to be some type of detox or rebound reaction to me pulling off gluten. It went away.

That's it. I just wanted to let you know that I definitely had DH as a kid, and it definitely went away for many years.

See what might have happened to you if you hadn't figured things out?

God bless,

April

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