I Think I Have Dh.

[janie-b]

I signed up as a member of this website last year, when after doing some research I decided I probably have celiac. I went gluten-free for about a month, during which time my symptoms got much better, but then got worse again. Once they got worse again, I decided I was wrong and went back to eating gluten.

Well, here we are, a year or so later, and I think I'm celiac again, because I'm pretty certain these outbreaks I've started having on my hands and arms are DH. I've looked at all kinds of dermatology websites with pictures, and read descriptions of everything under the sun. I think I have DH, and I think that confirms what I thought last year, that I am celiac. My symptoms probably got worse again back then because I inadvertently ate something with gluten in it.

The way this started was with a single itchy spot on the inside of my second finger. Absent-mindedly scratching that spot led it to develop into a blistery-looking pimple that itched like there's no tomorrow and was sensitive to the touch. I popped the pimple and a watery liquid came out.

A few days later I had another spot on the next finger. Then one on my second finger on my other hand. Then one under a ring, then two or three on my forearm, then one on my palm, and yesterday I found three spots under my watchband. It is definitely getting worse. With all these spots, liquid will come out of them for several days, and they stay tender and itchy for several days before they start to heal up.

I have stopped the gluten again as of about lunchtime yesterday, and will see over the next few weeks if these outbreaks decrease or stop. I have crappy insurance, and can't really afford doctor bills right now, so I have to do what I can on my own. Do you have any advice?

Thanks,

Janie

[dhd2000]

Just a basic "good luck" and remember that it can take awhile to clear up and really figure out what you can eat. I would recommend going very basic for a few weeks, meats, veggies, fruits and rice or potato. I was diagnosed in May and while I cleared up pretty quickly, I still got some outbreaks for the next few months. I had to cut out advil, anything with maltodextrin on the label and iodized salt (or any label that just said "salt", I only use things that say "sea salt" for now). It can take your gut a while to heal, so be patient and hang in there!

Denise

[janie-b]

Just a basic "good luck" and remember that it can take awhile to clear up and really figure out what you can eat. I would recommend going very basic for a few weeks, meats, veggies, fruits and rice or potato. I was diagnosed in May and while I cleared up pretty quickly, I still got some outbreaks for the next few months. I had to cut out advil, anything with maltodextrin on the label and iodized salt (or any label that just said "salt", I only use things that say "sea salt" for now). It can take your gut a while to heal, so be patient and hang in there!

Denise

Thank you, Denise. I had read somewhere earlier today that iodine can trigger DH as well. Question: if iodine triggers outbreaks of DH, are there many people who have it who also have thyroid dysfunction? Iodine is really important to healthy thyroid functioning.

Luckily for this particular situation, I have already cut out table salt, and monitor sodium in my diet very carefully because of blood pressure issues. I have never gotten into the habit of taking Advil - aspirin is my headache/body ache remedy of choice. I'll bet that maltodextrin can sneak up on you, though. I remember seeing that in a lot of different foods.

Janie

[LoriC]

I signed up as a member of this website last year, when after doing some research I decided I probably have celiac. I went gluten-free for about a month, during which time my symptoms got much better, but then got worse again. Once they got worse again, I decided I was wrong and went back to eating gluten.

Well, here we are, a year or so later, and I think I'm celiac again, because I'm pretty certain these outbreaks I've started having on my hands and arms are DH. I've looked at all kinds of dermatology websites with pictures, and read descriptions of everything under the sun. I think I have DH, and I think that confirms what I thought last year, that I am celiac. My symptoms probably got worse again back then because I inadvertently ate something with gluten in it.

The way this started was with a single itchy spot on the inside of my second finger. Absent-mindedly scratching that spot led it to develop into a blistery-looking pimple that itched like there's no tomorrow and was sensitive to the touch. I popped the pimple and a watery liquid came out.

A few days later I had another spot on the next finger. Then one on my second finger on my other hand. Then one under a ring, then two or three on my forearm, then one on my palm, and yesterday I found three spots under my watchband. It is definitely getting worse. With all these spots, liquid will come out of them for several days, and they stay tender and itchy for several days before they start to heal up.

I have stopped the gluten again as of about lunchtime yesterday, and will see over the next few weeks if these outbreaks decrease or stop. I have crappy insurance, and can't really afford doctor bills right now, so I have to do what I can on my own. Do you have any advice?

Thanks,

Janie

I Have DH I was just recently diagnosed with it, My understanding is, the only way to stop the rash is a gluten free diet and a med called dapsone, some people need to be on the med and the diet fora while before they clear up, IF you can, see a dermatologist and get a biopsy of the rash. but going gluten-free will definitly help in the meantime.

[Carol the Dabbler]

Janie, I don't know much about DH, just what I've been reading on the Internet recently, but this is the first time I've heard of it starting on someone's fingers. The descriptions all mention elbows, knees, buttocks, and back. Do any of you confirmed DH sufferers get the rash in atypical places?

I'm asking for two reasons:

1) Maybe what you have, Janie, is DH, but maybe it's not. As you and others have already noted, going completely gluten-free for a few months would be as good a way to tell as any.

2) Your description sounds suspiciously similar to something I've had a couple of times. Maybe someone can tell me whether my rash sounds like DH.

When I was in my early teens, my youngest brother was diagnosed with a serious thyroid problem (he later had surgery), so they tested the rest of the family, and I was found to have a slight problem. The specialist said my thyroid was making the right things, but was not releasing them into my bloodstream, so he prescribed a liquid iodine supplement (Lugol's solution). Some time later, I started having a rash on the sides of my fingers and toes. It looked like poison-ivy rash, but it didn't itch so much as sting. When the little blisters popped, they oozed watery stuff, then got crusty and later the area would peel. The rash eventually spread onto the palms of my hands and soles of my feet. Our family doctor said it might be something like athlete's foot (on my fingers?!), so I dutifully smeared Desenex on my hands and feet every night at bedtime, even though all it did was make the rash sting even worse. By the time I was in my early twenties, the specialist said I no longer needed the iodine. Some time later, the rash went away.

When I was in my early fifties, I started eating dulse (a seaweed) every day as a trace-mineral supplement. Some time later, I got that same rash on my hands and feet. (Even scarier, my heart would pound whenever I had a hot flash.) By then, I had learned that health problems don't "just happen," so I got to thinking, what am I doing now that I was also doing in my teens, but had not done since then? It didn't take long to come up with iodine as the culprit. I stopped eating the dulse, and the rash cleared right up (and my heart stopped pounding).

There may also have been a hormonal component at work. I had actually eaten a good bit of kelp (a different seaweed) when I was in my early forties, with no problems. Maybe kelp doesn't have as much iodine, or the same kind of iodine, as dulse. Or maybe I had problems with iodine those two times because of puberty and menopause.

Any ideas?

[LoriC]

Janie, I don't know much about DH, just what I've been reading on the Internet recently, but this is the first time I've heard of it starting on someone's fingers. The descriptions all mention elbows, knees, buttocks, and back. Do any of you confirmed DH sufferers get the rash in atypical places?

My rash started in the summer of 06, it started on the inside of my arms (inside elbow area) both sides of my neck, across my stomach, with meds from other dr.s treating me for just a contact dermatitis, it would disappear and come back in other areas, i've had it across my pubic area, lower back, back of my neck,head, shins of my legs...so i guess everyone is different.

[Carol the Dabbler]

Lori -- It sounds like you've had DH just about everywhere *except* the canonical elbows, knees, and buttocks!

[LoriC]

Lori -- It sounds like you've had DH just about everywhere *except* the canonical elbows, knees, and buttocks!

The section on my lower back was heading south! but my derm. said i was very lucky it didn't appear in places where its seen. I think the worse spot was my pubic area, thats enough to drive you nuts. And when he told me the name of the rash, my first thought was HERPES??????? Then he calmed me down LOL explained what it was. My rash is mostly gone now, maybe a itchy spot on my neck, (hairline) The only thing i'm thinking might still be glutening me is rice cakes? I eat those the most often, Quakers Cinn. apple, does anyone no if those are ok..according to the Ingred. they seem to be ok. Thanks, Lori

[dhd2000]

I've had DH on my hands and fingers many times. Mostly on knees and elbows, but also on my ankles, arms and buttocks. Glad it's all cleared up now!

Iodized salt has given me the rash, so maybe you were just getting DH from the iodine directly. Now that I'm gluten-free, I can handle some iodized salt, but it took awhile on the gluten-free diet.

Denise

[ravenwoodglass]

I also have had DH show up in unusual places. As a child my arms, legs and face were covered with it and it was thought I somehow kept getting into poison ivy - 12 months out of the year. As an adult it generally showed up on my face, scalp, neck and back but I have had outbreaks on my fingers, palms of my hands and bottom of my feet. Bottom of the feet is lots of fun if your also ticklish. All that helped me was gluten free and time. The majority of the worst of it was gone in a couple of months gluten free, with the exception of my scalp. But that was because I didn't know to remove it from my toiletries. For the first couple years gluten-free I would get an outbreak from even the smallest amount of CC. Now after 5 years it takes a lot for me to get more than just a little blister or two. I have never taken Dapsone but I do use non-iodized salt and so far have not had any Thyroid problems. Knocking on wood here . My doctor also wouldn't let me get the iodine injections when I had a CT so make sure that you let them know if you need to have any injections for tests.

[Carol the Dabbler]

I'd be just a little leery of anything that comes from Quaker, Lori. They make anything and everything in the same plant, so contamination is bound to be an issue at times. I used to live in Cedar Rapids, and if the wind was coming from the Quaker plant, you could tell what they were making that day -- Jeno's Pizza, cookies, etc.

Lundberg makes much nicer rice cakes anyhow, and the bag says "Gluten Free" in big letters right on the front, but they don't elaborate. I'm not yet gluten-free, so can't give you any personal experiences with that aspect of Lundberg's products.

Denise & Ravenwoodglass, thanks for sharing your experience with DH & iodine. I guess my rash was what the doctors would call "atypical" -- meaning who knows?

[LoriC]

I'd be just a little leery of anything that comes from Quaker, Lori. They make anything and everything in the same plant, so contamination is bound to be an issue at times. I used to live in Cedar Rapids, and if the wind was coming from the Quaker plant, you could tell what they were making that day -- Jeno's Pizza, cookies, etc.

Lundberg makes much nicer rice cakes anyhow, and the bag says "Gluten Free" in big letters right on the front, but they don't elaborate. I'm not yet gluten-free, so can't give you any personal experiences with that aspect of Lundberg's products.

Denise & Ravenwoodglass, thanks for sharing your experience with DH & iodine. I guess my rash was what the doctors would call "atypical" -- meaning who knows?

I"m not sure i've seen the Lundberg brand in my stores i shop at, i'll have to check more into it. I'm just going to stop eating them and see if the few spots i have goes away. I am allergic to Iodine, i had a CAT scan done once as a child and woke up the next day looking like the elephant woman, HIVES galore, I don't think Iodized salt bothered me, but of course i don't use much salt..I can't eat fish to often, maybe once in a while, last Christmas i went a little overboard with shrimp and had hives for 2 weeks. Thanks Carol for the heads up on the ricecakes.

[Carol the Dabbler]

Lundberg rice cakes are generally found in health-food stores. I used to see them in the health-food aisle of grocery stores, too, but lately Quaker seems to have taken over that market.

I went on their web site, and found this: Open Original Shared Link

I think you'll like 'em!

[LoriC]

Lundberg rice cakes are generally found in health-food stores. I used to see them in the health-food aisle of grocery stores, too, but lately Quaker seems to have taken over that market.

I went on their web site, and found this: Open Original Shared Link

I think you'll like 'em!

thank you so much, I do have a health food store near me that carries a wide variety of gluten-free foods, I will look there when i go back. I like the rice cakes to snack on, I'm a snacker!!!!

[janie-b]

Thanks for all the interesting discussion, folks. I'm in my fourth day without gluten, and have had no more of these little bumps. I'll continue with this and see what happens next week.

Do people who have DH not also have the digestive symptoms of celiac? Because I do have some of those symptoms, and there has been some improvement this week since I changed my diet. I am much less bloated in my abdomen than usual.

J

[ravenwoodglass]

Thanks for all the interesting discussion, folks. I'm in my fourth day without gluten, and have had no more of these little bumps. I'll continue with this and see what happens next week.

Do people who have DH not also have the digestive symptoms of celiac? Because I do have some of those symptoms, and there has been some improvement this week since I changed my diet. I am much less bloated in my abdomen than usual.

J

Some people with DH have stomach problems and some don't. Also you have to remember that a lot of us grew up thinking the occasional upset stomach was normal, if we had C we weren't getting enough fiber, if we had D we were under stress or depressed. We expect to have heartburn and stuff and many don't look at it as a problem until lots of other stuff starts to shut down. Look at all the OTC meds for stomach problems. I never knew that my stomach growling was anything unusual for example, until it didn't at all any more no matter how hungrey. For many with celiac or gluten intolerance the symptoms come and go also, for women at times they seem to be tied to periods. It is usually at the end stages that the D is constant and usually celiac isn't looked for till we are almost dead in this country.

[lovegrov]

Just like gut celiac, DH is different for everybody. I had DH for more than 20 years with no obvious celiac symptoms, other than the fact that my gas could clear a room. No diarrhea, though, and nobody told me about the DH/celiac link (although my dermatologist did try hard to ge me to quit eating wheat). I had DH blisters on my fingers occasionally, although not usually. Eventually the celiac kicked in and really decked me.

richard

[Carol the Dabbler]

I'm new to all this too, Janie, but from what I've read, some doctors consider DH to be a separate disease (also caused by gluten intolerance), and some consider it to be just another possible symptom of celiac disease. So yes, apparently someone with DH could very well have any of the other celiac-type symptoms.

Glad to hear you're doing better all around!

[dhd2000]

I had some mild GI syptoms, but that didn't bother me as much as the DH. Since going gluten-free, I have no DH outbreaks, but if I accidently get gluten, I get some GI symptoms, again nothing awful, but I do notice.

Denise

quote name='janie-b' date='Oct 19 2007, 04:24 PM' post='354706']

Thanks for all the interesting discussion, folks. I'm in my fourth day without gluten, and have had no more of these little bumps. I'll continue with this and see what happens next week.

Do people who have DH not also have the digestive symptoms of celiac? Because I do have some of those symptoms, and there has been some improvement this week since I changed my diet. I am much less bloated in my abdomen than usual.

J

[LoriC]

I had some mild GI syptoms, but that didn't bother me as much as the DH. Since going gluten-free, I have no DH outbreaks, but if I accidently get gluten, I get some GI symptoms, again nothing awful, but I do notice.

Denise

quote name='janie-b' date='Oct 19 2007, 04:24 PM' post='354706']

Thanks for all the interesting discussion, folks. I'm in my fourth day without gluten, and have had no more of these little bumps. I'll continue with this and see what happens next week.

Do people who have DH not also have the digestive symptoms of celiac? Because I do have some of those symptoms, and there has been some improvement this week since I changed my diet. I am much less bloated in my abdomen than usual.

J

I had the GI problems for about 16yrs, they tied my D in with having my gallbladder removed..it wasn't until i developed a rash last summer and just going to the dermatologist this summer finally, that my derm said i had DH, so now my GI problems are gone and my DH keeps coming and going..I did real well when i first went gluten-free, but now it seems to be coming back but in different areas..like on my forehead and eyebrows! I did buy new makeup and i try to go without makeup as much as possible.

But if i gluten myself accidently, i definitly know, My tummy grumbles and i get a mild case of D and the head fog, and i get very tired.