How Did Your Dh Start?

[Meg123]

Hello

I was just wondering how DH starts. I've been looking at pics of it on the web, but I think all the pics look pretty developed.

Does it start like that, like bam, one day, there it is in full monster form like that, or does it start with itchy skin, maybe with tiny small bumps?

This is what my young daughter and I have, on our back. It's just so itchy, but there's not much to look at, it's getting worse, but it's just tiny tiny little raised bumps which yo can really only feel with your finger tip, or if you look very carefully . I've only had it a week (been on the gluten challenge) I don't know if it's related to gluten or not, so just wondering about DH.

Thank you very much

Meg

[rgarton]

I started to get little bumps on my back after i went gluten free, i have always had an exceptionally clear back so i was slightly concerned. I asked my doctor to have a look the other day and she said that because my immune system was recovering i was more susceptible to minor heat rash from sleeping in a tshirt. And from using shampoo/conditioner/body wash with gluten in, ive stopped using that now and its clearing up already!

[rgarton]

Oh and they itched the hell outta me! I had so many scabs on my back from scratching them, she said that was just harming my back more and to put plenty of moisturizer on

[ravenwoodglass]

You are likely to get a wide variety of answers. Mine started full force at about 5 covering my legs and arms. It was misdiagnosed as poison ivy but it never went away except for the once a year when they would give me a 10 day course of prednisone. Eventually in my teens it did calm down a bit and then the rashes were just in the creases of my joints.

[mamadinosaur]

My guess is it can start anywhere...

Mine started on my shins. It stayed there for over a year...and I ignored it. Then suddenly over a period of several months it moved around my body - one arm, then the other...my hips..my back...shoulders. Now when I flare I get it everywhere. I didn't have blisters on my shins when it started - just insane itching. The blisters came as it got worse.

Good luck!

[Meg123]

My guess is it can start anywhere...

Mine started on my shins. It stayed there for over a year...and I ignored it. Then suddenly over a period of several months it moved around my body - one arm, then the other...my hips..my back...shoulders. Now when I flare I get it everywhere. I didn't have blisters on my shins when it started - just insane itching. The blisters came as it got worse.

Good luck!

Thanks. So what did it look when when it first started?

[kmag]

I've not been diagnosed, so take this with a grain a salt (uniodised, of course!). I know it's DH, though.

My rash started on my forearms over a year and a half ago, maybe even earlier. I thought it had to do with my job as a massage therapist - you know like an allergy to the lotions or gels we use. It was small red bumps, with larger ones thrown in, on the tops of my forearms, and very itchy. The rash was always better in the morning and would worsen throughout the day.

It wasn't till it started on the backs of my calves and ankles that caused me to think it wasn't job related. The bumps there were/are like the bigger ones on my forearms. I can't remember if I ever had the small red bumps there. They honestly look like bug bites, which is what the dermatologist told me they were. Umm, not!

Anyway, three months gluten free and the small red rash is gone, but the larger ones are still there and itchy. Strangely enough, I've started to get small blisters occasionally now after being gluten-free. I did, however, eat seafood and salted popcorn when this happened (the iodine factor?).

The only other things I can think to mention is the symmetry thing and frequent flat hive-like spots as well that are more transient.

[eatmeat4good]

I got a disc shaped sore on my outer calf that lasted a year and a half. They treated it as fungus since it looked like ringworm. It never went away with the medicine though. It had raised edges and itched like crazy at night. After 2 years it went away. Then I got tiny pinpoint itchy blister bumps between my fingers every so often. They would itch, break, ooze and heal and I just thought it was a weird deal. Then I got a sore at the base of my neck and one at the base of my spine...they took months to heal. Then I got hives on my chin that was called perioral dermatitis....blister, peel, ooze, bleed, scab, repeat....for years. It stung and hurt like hell but never itched. It was called neurotic excoriation...by high level dermatologists, but it wasn't. When I found Celiac DH, I quit gluten and the sores healed...slowly but surely. I never had more than two or 3 lesions for many years. Now if I get glutened only the ones on my face break out and blister...darn it! Why not the ones that can be covered? My son got mosquito bite like bumps on his lower legs....repeatedly. His was DH too but very different from mine. It went away in a few months being gluten free. Interesting question. People need to know how DH can present.

I was reading about Dr. Duhring's observations of DH in the 1800's. DH is also called Duhring's Disease. he didn't know gluten was the cause, but he described the intense pain and itching of the sores and how they responded to no treatment. Interestingly, while all the current literature says that DH very rarely occurs on the face, Duhring himself said that it can occur anywhere on the body including the face. I wish I had known.

[lovegrov]

I think I started out with clear itchy blisters, probably on my elbows or knees or both.

richard

[GFreeMO]

Mine was the same as lovegrov. Itchy blisters on knees and elbows.

[rosetapper23]

I think the "official" literature on DH needs to be scrapped! My DH has always primarily been on my face, and even when I was diagnosed with celiac and later read about DH, I didn't at first recognize that that was what I had because all the medical literature I read said that it didn't occur on the face. Also, for me, it's not entirely symmetrical. Besides my face, I get DH on the sole of my right foot and on my left hand. My son gets it on his face, on the sole of his LEFT foot, and on his RIGHT hand--just the opposite from me. So, I think that further research (actually, ANY research) is in order. Medical experts don't seem to understand DH at all. New studies are definitely needed.

[Hopeful1950]

Mine started with what appeared to be a few bug bites on my ankles. But they wouldn't stop itching and wouldn't heal.

It kicked into full gear when I started taking Actonel (osteoporosis med). It spread all up and down my shins, all over my ankles, arms from wrist to shoulder (on the outside), back of the neck, upper back, lower back and the cleavage of my behind. Some were raised red areas with pinpoint water blisters (these are the worst), older lesions heal from the inside out because they keep blistering around the edges (ringlike), some are isolated and very deep blisters (these leave white spots behind). Many spots have healed and blistered all over again because I went undiagnosed for almost 8 years.

I now understand that the Actonel is full of iodine and that is why it made it so much worse.

I have been gluten-free for almost a year and very low iodine for about 6 months and am gradually healing. Slow but steady.

[firefightersgal]

My DH was misdiagnosed as eczema for years. I had an itchy rash on both shins for years. When I finally figured out what the heck was wrong with me, I had a full-blown, insanity0inducing rash on the backs of my thighs. That went on for several months until I stopped eating gluten. A few days ago, I accidentally ate gluten and woke the next morning with my telltale DH. I took a picture of it in case my doctor wanted to see it. This is what it looked like first thing in the morning. The night before, there was no rash.

[Meg123]

My DH was misdiagnosed as eczema for years. I had an itchy rash on both shins for years. When I finally figured out what the heck was wrong with me, I had a full-blown, insanity0inducing rash on the backs of my thighs. That went on for several months until I stopped eating gluten. A few days ago, I accidentally ate gluten and woke the next morning with my telltale DH. I took a picture of it in case my doctor wanted to see it. This is what it looked like first thing in the morning. The night before, there was no rash.

Thanks for that. Wow it really looks like eczma doesn't it, no wonder you were misdiagnosed. It's just what my daughters eczma looks like too, and I always notice it flair up after biscuits or something....hhhhhmmmm. Will start with me, then move on to the children.

[Ghost]

I'm new to this Celiac-thing, and am self diagnosed, but have some minor medical training. DH is really the key that made everything fall into place for me and pointed me in the Celiac direction. Prior to DH I thought I had MAV (migraine associated vertigo), IBS, and or something verging on Lupus.

My DH started about 6 months ago (I'm 38 - male), starts off looking (and itching) like bug bites, always around my stomach or lower back, quickly widens out to the size of a nickle, itches like crazy for a few days, sometimes blisters. Went to a few MD's and they gave me a cream with a steroid (they diagnosed as a fungus), if I use the cream 3x - 5x a day it goes away within 3 days. If I don't use the cream it continues to spread.

The DH leaves a 'stain' (dark spot) where it was, and tends to always reoccur in the same spot.

I've been off gluten now for 10 days and this is the first 10 day period in 6 months that I've been free from DH. MY DH looks JUST like the picture from the poster above, except it's only nickle sized.

[CarolinaKip]

I got a disc shaped sore on my outer calf that lasted a year and a half. They treated it as fungus since it looked like ringworm. It never went away with the medicine though. It had raised edges and itched like crazy at night. After 2 years it went away.

I have a disc shaped sore on the back on my leg near my knee and I've been wondering if this is DH starting. It doesn't itch though. It reminds me somewhat of ring worm, but it's not raised. I'm not sure what to do at this point with it..Watch it?

[Rubylantern]

I have had DH as long as I can remember (I'm 29 now). I've been to countless doctors and have been prescribed I don't know how many creams, ointments, etc... None of which ever worked. Every doctor claimed it was eczema.The rash would appear anywhere from my arms & legs, to my stomach, neck, back, and sometimes my face. The itching drove me completely insane and sometimes would be downright painful just from my clothing rubbing against it. Only about a year ago, I decided to take matters into my own hands and try an elimination diet to see if any foods I was eating was causing the rash. Gluten happened to be the first thing I tried to eliminate and lo & behold, I cleared up after only a couple weeks. I went gluten free for a while but I wanted to know for sure if I had celiac disease. My doctor explained I would have to get back on gluten if the tests were to be accurate and I did for a few months, which were miserable when the rash came back even worse than before. I remember how warm the weather was and I couldn't wear tank tops in public because my arms were so bad. Even my friends and family were shocked to see my neck which I couldn't hide and it was completely covered with the rash. I finally took blood tests & a biopsy, all of which came back with a resounding "Yes". I was thrilled to finally have a proper diagnosis and immediately got off the gluten. Just like clockwork, the rash cleared up, as did some symptoms I never really associated with gluten... like fatigue, easy bruising and sore muscles. It still amazes me how I had to practically diagnose myself and found the real root of the problem while so many doctors were able to do nothing my entire life.

[itchy]

Rubylantern: Glad you've found a solution!!

I had GI symptoms for 15 years, and perhaps as long as 25 years. All GPs that I visited during this period steered me away from celiac as a diagnosis. Only after I took the highly typical DH evidence on my arms to a dermatologist did I get anyone to buy the celiac diagnosis.

I wonder if it isn't a negative reaction to the alternative medicine industry. Many naturopaths, chiropractors, etc. recommend wheat free diets for a variety of complaints.

Sometimes I think that the conventional medical industry believes that coeliac is one of the diseases they consider 'invented diseases' like fibromyalgia, etc. Or at least that many of us are hypochondriacs in search of a disease.

I can't think of any other reasons why they seem so singularly unable to diagnose this disease promptly.

My most recent GP pooh-poohed my concerns about celiac saying that a wheat free diet is almost impossible to maintain. Then quickly turned his attention to my cholesterol levels. As if a disease doesn't exist because the cure is difficult.

[Marilyn R]

Rubylantern: Glad you've found a solution!!

Sometimes I think that the conventional medical industry believes that coeliac is one of the diseases they consider 'invented diseases' like fibromyalgia, etc. Or at least that many of us are hypochondriacs in search of a disease.

I can't think of any other reasons why they seem so singularly unable to diagnose this disease promptly.

My most recent GP pooh-poohed my concerns about celiac saying that a wheat free diet is almost impossible to maintain. Then quickly turned his attention to my cholesterol levels. As if a disease doesn't exist because the cure is difficult.

Excellent points.

I think that doctors can't prescribe a pill or cream for celiac disease, so they're out of their comfort zone. The only people reminding them about the disease is US. Studies and publications are few and far between compared to the rapid stream of information that doctors face every day.

I try to make a point of asking my doctors if they're ordering more celiac panels every time I see them. That's my small talk, vs. "Hi, how are you and your family?" I don't know if it helps, but it can't hurt.

[Meg123]

just another question regarding the similarity to eczma: is it possible that if someone had DH and it was being treated as eczma, that constant use of a steroid cream would help it?

I'm thinking of my daughter who suffers from 'eczma', but will never forget a couple of years ago, whe broke out all over her hands and feet with what looked like school sores, or ulcers, the Dr said it was the worst case of eczma he's ever seem. It just flared up like that one day, although she always had some degree of eczma on her hands and feet.

[Poppi]

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.

[itchy]

Poppi: Many of us had some skin symptoms that didn't act like DH before the typical DH arrived.

And in the end does it matter? The medical community seems very concerned with categorising diseases based on symptoms, appearance, antibodies, etc. They have their reasons.

But those of us with symptoms are primarily concerned with the solution, and the solution to a variety of conditions seems to be avoiding gluten. Low tech and effective.

Meg: You might check some old posts regarding steroidal creams. It is certainly suggested as a treatment here: Open Original Shared Link

[Meg123]

Thanks everyone for all your reply's. Thanks for the pics too.

Poppi, you've had a terrible time of it. Your rash, looks a lot like me daughters 'eczma' does on her legs and arms sometimes when it really flares up.

Both my daughters only started getting eczma like rashes at 18 months of age, which was a few months after introducing wheat to their diet, prior to that they hadn't had much at all.

[jemms]

I am having extreme cases of itchiness right now...unbearable. It started on my ankles and I thought they were bug bites but they have moved to my stomach and forearms. I was recently diagnosed with Celiac and it has been a transition to say the least so the other day I binged on pizza and other gluten crap which was stupid, I know. What correlation does iodine have with DH? Isnt it difficult to avoid salt since it is in everything? Excuse my ignorance!! I am just so happy to have this forum to ask my questions to! This place is a Godsend for me.

[Lalama]

My Dh started on the backs of my elbows and was intially diagnosed as ring worm. (Ironically this rash started about a month after having my appendix out). After about 9 months the elbows cleared up-after being treated with all sorts of creams. Then a few months after that I got these lesions on my chin, which the dermatolgist called perioral dermititis. After I did some research I tried a gluten free diet and after about two months it cleared up. My skin was the clear, but I got glutened last week and also had a a bag of salty pretzels and now have that same nasty dh breakout on my chin in the same area. Very discouraging The worst part is the long wait for it to clear up. I am debating whether to treat it with dapsone or just wait it out...?