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Meg123

How Did Your Dh Start?

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My DH started whileon a motorcycle trip last August for 3 weeks and about 8,000 miles. The rash was first noticed whn I was in the southwestern US and after beingoutside for 5 days in 115 degree plus heat. I developed the rash on my back, legsand arms. It was very itchy and was misdiagnosed by 3 different doctors. I continuedon a 3 week motorcycle trip with that itchy rash.

The rash lasted just short of 4 months and finally went away. Every so often Idevelop small red marks on my arms where the rash previously was but it comesand goes without any discernable pattern.

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My DH started whileon a motorcycle trip last August for 3 weeks and about 8,000 miles. The rash was first noticed whn I was in the southwestern US and after beingoutside for 5 days in 115 degree plus heat. I developed the rash on my back, legsand arms. It was very itchy and was misdiagnosed by 3 different doctors. I continuedon a 3 week motorcycle trip with that itchy rash.

The rash lasted just short of 4 months and finally went away. Every so often Idevelop small red marks on my arms where the rash previously was but it comesand goes without any discernable pattern.

OMG! I can't even imagine how much you suffered! I went undiagnosed for 8 years with this damn itchy rash and stopped riding 6 years ago due to the misery I was going through on my motorcycle. I live in the desert southwest and the hotter I got the itchier I got! I was building up antibodies for so long that it is taking a long time for me to heal...can't wait to get back on my bike. Maybe in January....

Did you go gluten free? Now that you have healed are you able to ride in the heat comfortably?

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Jemms,

Yes, avoiding iodine can be difficult if you eat at restaurants and consume a lot of processed foods. I tend to order things where I can ask that no salt be added because I don't know if they use iodized salt. A lot of brands of chips seem to use iodized salt (or course, they don't list it in the ingredients, though). I haven't had any trouble with Lay's potato chips.

Of course, you can control your intake of iodine at home since you can purchase non-iodized salt. Also, you can find iodine in seafood, asparagus, and some dairy products (depending on where you live). I haven't found a problem with organic dairy.

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OMG! I can't even imagine how much you suffered! I went undiagnosed for 8 years with this damn itchy rash and stopped riding 6 years ago due to the misery I was going through on my motorcycle. I live in the desert southwest and the hotter I got the itchier I got! I was building up antibodies for so long that it is taking a long time for me to heal...can't wait to get back on my bike. Maybe in January....

Did you go gluten free? Now that you have healed are you able to ride in the heat comfortably?

I am gluten-free now and never stopped riding. I still get very small patches of rash outbreaks after being in the heat and sweating for an extended amount of time.

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I'd been on hydrocortone (an oral cortisone) for a couple of years, as one of the things my doctor found while searching for answers to a bad reaction to thyroid meds was that I had low adrenals, too. When I literally OD'd on thyroid, a psychiatrist ordered me off all of my meds cold turkey in order to stabilize, since he thought that combined they were all making me bipolar.

Within a week, these itchy blisters started to appear on my elbows, knees, buttocks, between my fingers, and in my ears (!!). The ones in my ears were especially bad. I never got the big rash, just the individual blisters. The nurse practitioner I had for primary care back then misdiagnosed the DH, and gave me a light cortisone cream plus an anti-fungal cream. All that did was make the blisters bleed.

Long story short, the dermatology dept. at the local teaching hospital dx'd the DH via skin biopsy and put me on Dapsone. When the DH cleared within a week, I was sent for blood tests and an endoscopy that returned my first celiac dx.

Fast forward 10 years, and I OD'd on thyroid again. In those 10 years though, I'd have occasional bouts of breakthrough DH, even while on 100mg. of Dapsone per day. But when I went off thyroid meds completely for a while, I had no episodes of breakthrough DH, so I tapered off the Dapsone. I've been off Dapsone for over two years now without a single DH relapse.

We've been slowly reintroducing thyroid meds again

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Here is the story of my rash:

When I was pregnant with my daughter (who is now 2) I developed a rash that was all over my belly. It was only mildly itchy but annoying. Since it was a very high risk pregnancy (I have a blood clotting disorder that has cost us 3 babies and I also had Hyperemesis Gravadarium and suffered 2 placental abruptions) nobody cared about the rash on my belly. Just a weird pregnancy thing, right?

Baby is born and rash spreads even further, down my hips, up under my arms... gets brushed off as a breastfeeding hormone thing.

Baby is 6 months old, rash is still there and now I have a patch on my forehead ... must be heatrash!

Baby is 2 and rash is still there! Doctor thinks it's tinea versicolor and prescribes a medication. I take a look a the side effects and then include liver damage and since I've had some dodgy liver function tests in the past I'm a big wary of taking this medication. So I put it off.

A few months later I go gluten free ... rash is completely gone within 10 days. Not a trace!

Now I don't know if this was anything related to DH or if it would have progressed to DH but it was obviously gluten related.

It looked like this but was spread all over my abdomen, around my sides to my back, down my hips, on the insides of my arms and across my forehead.

0707ConPCTea.jpg

I had that same look and it seemed to have been brought on by a certain paint that was used in my office. I had to get a steroid pack to get rid of it.

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I haven't been officially diagnosed, but it seems that that doesn't matter much with celiac, since getting a diagnosis in North America is almost impossible.

Before going gluten-free, I noticed very itchy, blister like bumps on my hands - the backs of my hands, and the sides of my fingers mostly. They were as itchy as h*ll, and they would actually tear and leak clear fluid if I scratched them enough.

After I went gluten-free, they disappeared. They only show up now if I get glutened. Last time was a few days ago, and the bumps were significantly larger than they were last time. And just as itchy.... !!!!

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I am new to this site and just posted "Lost" in the Prediagnosis section.

This looks like my rash, too. Also, thought it was eczema, but now see it may be DH. Wow, this is enlightening. Thanks for posting your pic.

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Hi, I'm new to the forum.

Been undiagnosed for 6 years now. My symptoms come and goes. it starts with itchy tiny bumps (for me, sometimes in between the fingers, outer thigh, or upper arm), then it will form a tiny blister with visible clear 'bubble' which easily breaks and leak out the clear fluid. then the wound will become bigger but never close. I've had 2 previous really bad outbreaks before, my previous 3 dermatologist diagnosed stress related psoriasis, eczema, and PLEVAA. All been treated with prednisone and it cleared up right away. All the open wound started to heal within a few days. However, the 2nd time, the dermatologist stopped my dosages to soon, and it came back worse the week after. We had to start another dosage to keep it down.

I had another bad outbreak a month ago, this time, I decided to take matters into my own hands and tried gluten-free diet 5 days ago. What a huge improvement! all the open sores started to heal, even though there are still bumps. but at least they don't itch and burn as before. This gives me more confidence to do more gluten-free research online and found this forum. Does anyone knows how long it will take to clear out all the gluten from the body? Obvious, I've eaten gluten all my life without knowing that I'm allergic to it. Hopefully, once all the gluten are out of the system, my skin will be back to normal again. So glad I found this forum, will try to post picture soon. Thanks.

Megan

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Hi, I'm new to the forum.

Been undiagnosed for 6 years now. My symptoms come and goes. it starts with itchy tiny bumps (for me, sometimes in between the fingers, outer thigh, or upper arm), then it will form a tiny blister with visible clear 'bubble' which easily breaks and leak out the clear fluid. then the wound will become bigger but never close. I've had 2 previous really bad outbreaks before, my previous 3 dermatologist diagnosed stress related psoriasis, eczema, and PLEVAA. All been treated with prednisone and it cleared up right away. All the open wound started to heal within a few days. However, the 2nd time, the dermatologist stopped my dosages to soon, and it came back worse the week after. We had to start another dosage to keep it down.

I had another bad outbreak a month ago, this time, I decided to take matters into my own hands and tried gluten-free diet 5 days ago. What a huge improvement! all the open sores started to heal, even though there are still bumps. but at least they don't itch and burn as before. This gives me more confidence to do more gluten-free research online and found this forum. Does anyone knows how long it will take to clear out all the gluten from the body? Obvious, I've eaten gluten all my life without knowing that I'm allergic to it. Hopefully, once all the gluten are out of the system, my skin will be back to normal again. So glad I found this forum, will try to post picture soon. Thanks.

Megan

Yes, does anyone know how long? I have been gluten free for a week now and there is no improvement.

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Yes, does anyone know how long? I have been gluten free for a week now and there is no improvement.

For some folks it takes months and months. Make sure you also avoid major sources of iodine, like table salt and certain seafoods.

richard

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Poppi, I'm no doctor, but I've seen 5 people with DH, including my father and myself, and the DH of all those folks looked nothing at all like this. Obviously that doesn't mean that it absolutely isn't DH, but it sure is different than what I had.

richard

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We had went on a cruise in September at the same time we were in the process of buying a house<< stressful. In October I was wiped out sick had been to the doctor diagnosed with a very bad sinus infection after cat scan confirmed this of course, put on antibiotics for a month could not get rid of the sinus infection. One morning I was showering and felt a blister type bump on the side of my behind I pushed on it, and it popped and then all you know what broke loose a few days later I'm telling you I had the rash from hell all over my back and butt it itched so bad I was so scared I had some dreaded disease. We are almost a year later rash still here but not near as bad it was horrible my back has terrible scars from this now on the part of my leg just below my butt on the side I have these large purplish brown scars it looks hideous. This is how it started for me.

Ok sorry for straying off topic it bit

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When my rash started it popped out over night and was the size of a large dinner plate if not bigger and was a full out monster with blisters and all. My hypothesis is that the CT scan I had the night before ending up in the hospital must of had gluten in it and was the cause of my problems. That was the first time I had the rash. It was the second time in a week I had to drink the contrast... ironically enough they were trying to figure out what was going on with my stomach/intenstines. At that point the dr called it a fungal rash, which reading the previous posts is a common theme... like eatmeat4good and Ghost... a few others as well... ring worm is fungal as well. Then they said it was hives.. even though I was already on zyrtec at the time.. but I am sure it was HD in hind sight. Hindsight is 20/20.

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Kurly,

Could the contrast have contained iodine? Many of them do. Iodine really makes the antibodies in the skin blossom.

My DH was minor until I took a weekly medicine that was full of iodine and then it went crazy and spread all over my body. Unfortunately, stopping the medicine was "closing the barn door after the cows got out". The DH never went back to being minor.

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Here's one of my patches (this is my left shin):

Photo_0CD17D61-49AB-2165-D37B-31EC4C4ECA72.jpg

I wish I had taken a picture last night instead- I got glutened a few days ago and my whole right hand was just totally red and bumpy.

Anyway, I haven't been officially diagnosed. I have asthma and allergies so I sort of thought it was just contact dermatitis, but a doctor told me she didn't think it was. Basically, around the same time as my stomach pain started up, I got this raised, dime-sized and shaped rash on my hand. It was originally diagnosed as ringworm, I did antifungals for a month or so and then a doctor took a scraping and said I might have had ringworm but I definitely don't have it anymore. She gave me a steroid cream. A few months later I saw another doc and it happened to be be right after I had cleaned a fish tank (dirty water seems to aggravate it) so it was super angry and inflamed and she told me to see a dermatologist, which I haven't done because of money.

Over time it has spread to another patch on my right hand and that round one on my left shin. It's so fiendishly itchy I don't even want to think about it. The steroid cream does help with the itching but not with the blisters, and it's really unsightly. I wore fingerless gloves to a job interview because I was so embarrassed about looking like I had scabies all over my hand.

Gotta love DH.

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OMG! your rash looks just how my rash started out about 15 years ago, I would get it on my neck and the outer edges of my arms spreading like wild fire. Dr's always said it was contact dermatitis and give me some cream! itching like crazy I was constantly applying cream and covering my arms and neck in mid summer. fast forward to today I haven't got it on my neck in a while but still get it on my arms and now its bilateral on my stomach and back and it is extremely itchy and uncomfortable.

Here is the story of my rash:

When I was pregnant with my daughter (who is now 2) I developed a rash that was all over my belly. It was only mildly itchy but annoying. Since it was a very high risk pregnancy (I have a blood clotting disorder that has cost us 3 babies and I also had Hyperemesis Gravadarium and suffered 2 placental abruptions) nobody cared about the rash on my belly. Just a weird pregnancy thing, right?

Baby is born and rash spreads even further, down my hips, up under my arms... gets brushed off as a breastfeeding hormone thing.

Baby is 6 months old, rash is still there and now I have a patch on my forehead ... must be heatrash!

Baby is 2 and rash is still there! Doctor thinks it's tinea versicolor and prescribes a medication. I take a look a the side effects and then include liver damage and since I've had some dodgy liver function tests in the past I'm a big wary of taking this medication. So I put it off.

A few months later I go gluten free ... rash is completely gone within 10 days. Not a trace!

Now I don't know if this was anything related to DH or if it would have progressed to DH but it was obviously gluten related.

It looked like this but was spread all over my abdomen, around my sides to my back, down my hips, on the insides of my arms and across my forehead.

0707ConPCTea.jpg

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