How Many Have Dh, Really?

[itchy]

I'm curious.

It's claimed that one in a hundred people are celiacs and one in a hundred celiacs have DH. That would mean one in 10,000 have DH.

But I know one other person in my county of 8,000 who has DH and I only know a small proportion of the people who live there. In another context I know two celiacs, one of whom has DH, in a much smaller community of a couple of hundred people.

Is that a coincidence or are there many more celiacs, and people with DH, than the literature acknowledges. Certainly the amount of gluten free food available in supermarkets seems to suggest that the market is pretty large even recognising that the families of celiacs also eat gluten free.

[lovegrov]

The state I have seen say as many as 25 percent of people with celiac have or have had DH, not 1 percent.

richard

[cassP]

yes- i too heard that around 20% of Celiacs get DH.

i think getting a correct statistic on how many have Celiac, and how many have DH is so difficult- cause most people go undiagnosed- and then think about DH- most people have never heard of it, and many Dermatologists dont even know what it is- so it could be higher ?????

[lovegrov]

Make that "studies" I have seen.

richard

[itchy]

I don't know where I saw that 'one in ten thousand' statistic, it is clearly wrong.

[WestyPDX]

yes- i too heard that around 20% of Celiacs get DH.

I think the 1% number is closer to reality.

Data points: My primary care physician has ~2,000 patients across all ages. If the numbers are right, he should have about 20 celiacs currently. When we last discussed DH, he said I was his only patient with it in his 25 years of practice. My GI doc said she sees so few cases that it's an automatic dermatology referral from her, because she sees so little of it that she has no experience in its diagnosis and treatment.

[cassP]

I think the 1% number is closer to reality.

Data points: My primary care physician has ~2,000 patients across all ages. If the numbers are right, he should have about 20 celiacs currently. When we last discussed DH, he said I was his only patient with it in his 25 years of practice. My GI doc said she sees so few cases that it's an automatic dermatology referral from her, because she sees so little of it that she has no experience in its diagnosis and treatment.

and like i said in the rest of my comment- many probably go undiagnosed because they dont know what it is.. and that even many dermatologists dont know what it is.

[WestyPDX]

even many dermatologists dont know what it is.

What percentage would you say is "many"? If you walk into any reputable dermatologist's office and they see watery, itchy blisters covering joint areas, they can dx DH by sight alone. If 20% or so of celiacs have DH, why isn't this forum heaving with "do I have DH?" or "what are these blisters?" questions? There are some, but not a lot given the site's size/traffic.

[lovegrov]

Well, DH is common enough that it's the only celiac symptom that gets its own separate topic area. And the forum constantly gets "is this DH?" type questions.

richard

[WestyPDX]

Well, DH is common enough that it's the only celiac symptom that gets its own separate topic area. And the forum constantly gets "is this DH?" type questions.

richard

I recognize and agree that DH is a side effect of celiac disease, I'm living proof of that. But where are the numbers to support 20-25% of us having DH?

This forum has 73 pages of posts. Doctors has 94 pages. Coping With has 724 pages of posts. I don't see the DH forum "heaving" with undiagnosed patients that would support a 20-25% experience rate, or that any great number of patients are going undiagnosed.

As a celiac and DH patient, I believe we need to be honest with ourselves and others about these conditions. It's the only way to be taken seriously by the medical community. To plant a suggestion that a DH patient stands a good chance of not being treated properly at a dermatologist I believe sends the wrong message to celiac patients. It sets up an expectation of failure before they even get to the doctor's office.

When I went to the derm lab at OHSU, a major teaching hospital on the west coast, they knew what it was when I walked in the door. But the teaching doctor on duty had me hang around so he could round up a group of residents to see it first hand. Most of them had only seen pictures of it. A real live DH patient is that rare of an event for them.

I'm truly trying to wrap my head around the 20-25% figure. First hand experience with this disease isn't supporting those kinds of numbers.

[Hopeful1950]

I think it is the luck of the draw finding a dermatologist that is experienced with DH. I saw three of the top derms in my city and none of them snapped. In desperation I ended up at a psychiatrist who sent me to a buddy of his, who is an allergist, for help. The allergy doc figured it out.

I also think it has to do with the fact that they spend maybe 10 minutes with each patient in order to squeeze as many into the day as possible and sometimes they make a snap diagnosis. How do I know this? I work for docs, and I know the inner workings of a busy practice.

In many cases the rash can mimic acne, eczema and other things and therefore is misdiagnosed initially. In other cases (especially if you are a woman of a certain age) the initial diagnosis is that you are "neurotic" and the fact that you look like a pizza is somehow your fault. Believe me I have heard it all.

So, in conclusion, I'd have to say that it is likely that there are many cases of DH that go undiagnosed for many years and in many cases are never diagnosed correctly. For me it was 8 years of intense suffering before I got my answer.

I think this forum continuously encourages people to seek proper testing and a definitive diagnosis before embarking upon a life of gluten-free living. But...there are times where folks just can't seem to hook up with the right doc due to location, lack of insurance, etc. In those cases the forum is very helpful with tips and suggestions. I wish I had found it sooner. If I had, I might have been able to nudge the derms in the right direction. It would have saved me years of misery.

[Jenniferxgfx]

I wonder how many folks with "bad skin" actually have undiagnosed dh, so we might not know how many folks really have dh for a long time (if they ever figure it out).

I'm sure my lifelong eczema and "acne" is dh now. No doctor has ever suggested gluten as a trigger, and most blamed me for my own bad skin. How many others are suffering in this same way? I just don't think there's reliable data out there. Hopefully someday that'll change.

[momxyz]

I think there could be significant numbers of people who have Dh that don't get diagnosed. Just as with any other medical issue, it would seem logical that there would be a degree of variability to the presentation of the rash. So a "classic" case might be easily recognized. But, someone else's rash, which does not quite fit that classic presentation, might not be.

I could be a case in point. Now granted, I do not have an "official" diagnosis. (my husband was laid off at the time.) My rash was my "turning nifty fifty" present. It started on one ankle, then the other. Not my elbows or knees!

Why do I think it was Dh? It was extremely itchy, so much so that I would wake up in the middle of the night, unconsciously scratching. And the spots were very red. Not all of them were always blistery - another thing that didn't fit perfectly.

So why do I think this was DH? I had the rash for 10 months and NOTHING helped it, it only got worse. It was when my daughter went on a gluten free diet - for completely different issues - that the light bulb went off in my head. After reading and researching, I went gluten free. Gradually the rash began to heal. More telling, a month into the diet, I "went off the wagon" and within 2 days had a fresh crop of itcy witchy blisters.

As my rash healed, I was left with reddish purply spots that took months to fade. Two years later, most of them are gone now.

Self diagnosing is risky, but i didn't have the dollars at the time to throw at it. From what I have read, the way my rash began may be less than a classic presentation. But, the time course and manner of recovery after going gluten free is more typical.

So yes, I think there is the potential for DH being more common, and less recognized, than some numbers indicate.

[ravenwoodglass]

As a celiac and DH patient, I believe we need to be honest with ourselves and others about these conditions. It's the only way to be taken seriously by the medical community. To plant a suggestion that a DH patient stands a good chance of not being treated properly at a dermatologist I believe sends the wrong message to celiac patients. It sets up an expectation of failure before they even get to the doctor's office.

When I went to the derm lab at OHSU, a major teaching hospital on the west coast, they knew what it was when I walked in the door. But the teaching doctor on duty had me hang around so he could round up a group of residents to see it first hand. Most of them had only seen pictures of it. A real live DH patient is that rare of an event for them.

IMHO what is rare is that your doctor knew what it was. I had DH from about age 5 or 6. At that time my Mom was told I had 'poison ivy in my blood stream' which led to some really nasty shots every year for 10 years. In adulthood the diagnosis of my DH varied from contact dermatitis to pickers acne and lots of other labels that I don't remember. I went to some of the best hospitals in my state and it took literally 40 years for me to finally get diagnosed correctly with celiac and DH.

You got lucky that your doctors knew what it was. Most of us are not that fortunate. I see folks with DH lesions and the resulting distictive scars almost every day and I seriously doubt many of them have been actually diagnosed.

[beachbirdie]

I'm reasonably certain that my son has had DH, but he never went to the doctor for a diagnosis. When he would mention it to the Army docs, they just told him he had eczema and gave him creams that didn't help.

He had what seemed like poison oak all over his hands, itchy and awful. When my daughter was experimenting to find out why she was having so much abdominal pain and diarrhea after eating certain meals, we ran across a suggestion that this type of rash could be gluten related.

It wasn't classic, it was just on his hands. But after a 3-month gluten-free trial, his hands were clear for the first time in 15 years (not to mention that he had no more migraines or abdominal pain). He has been gluten free since. Well, until a couple of weeks ago when he decided to eat some gluten containing food that his wife could no longer eat, he didn't want it to go to waste. He was so sick, and realizes he must stay gluten free. Makes us certain the rash WAS DH, even without official diagnosis, not dishydrotic eczema which has also been suggested.

[takeiteasy]

As a celiac and DH patient, I believe we need to be honest with ourselves and others about these conditions. It's the only way to be taken seriously by the medical community. To plant a suggestion that a DH patient stands a good chance of not being treated properly at a dermatologist I believe sends the wrong message to celiac patients. It sets up an expectation of failure before they even get to the doctor's office.

When I went to the derm lab at OHSU, a major teaching hospital on the west coast, they knew what it was when I walked in the door. But the teaching doctor on duty had me hang around so he could round up a group of residents to see it first hand. Most of them had only seen pictures of it. A real live DH patient is that rare of an event for them.

I live in Rockland County, New York. I went to see my regular doctor in 2004(specializes in GI)& complained of stomach problems, diarrhea, gas, excruciating pain, etc. He sent me to have a colonoscopy & upper-endoscopy & biopsy of stomach. All tests came back negative. I just called the lab yesterday to ask whether the pathologist was looking for celiac and the answer, to my shock was no. Then in 2005 I went to the same doctor with a sudden skin condition which started out looking like mosquito bites, but would not go away. He sent me to a well known dermatologist locally, who had my skin lesions biopsied. He had the other doctor on board look at my skin and both just shook their head without a clue. My regular doctor knew of my stomach condition and never made the connection. Between then and now I went to more than one GI and more than one dermatologist and none made the connection between my stomach condition and skin and none suggested that I might have celiac. It wasn't until recently, when I was diagnosed with possible "skin lupus" that I went to see a dermatologist at NYU in Manhattan, NY, Dr. Andrew Franks. He specializes in - ready? Lupus! -. He studied my previous tests (whatever I was able to get over to him) and told me in no uncertain terms that I do NOT have Lupus and that I have celiac. After 7 years of seeing doctors he was the only one that recognized my skin as being DH. And this is in New York.

The most recent GI that I'm seeing now, is affiliated with Mount Sinai Hospital and specializes in celiac and told me that for the first 10 years of his practice he is guilty of not diagnosing a single patient with celiac and he still doesn't care for patients with DH. How archaic!!!!!! It is so depressing. All I want him to do is discuss my options for medication for DH and other issues I'm experiencing with my stomach not getting altogether better. I can not afford to go back to Dr Franks as he does not take insurance, however, I might just be forced to go back to him if this local guy won't accept my diagnosis. For now, he doesn't absolutely accept that I have celiac, and wants me to send him all of my previous lab results...so I start over again. It's amazing how little is known about this disease. their attitude is basically, you're not dying, you don't need surgery, so you'll be ok. NO! I'm not ok!!! I'm living a very debilitating lifestyle, but who cares?!

Isn't it nuts?

[ravenwoodglass]

The most recent GI that I'm seeing now, is affiliated with Mount Sinai Hospital and specializes in celiac and told me that for the first 10 years of his practice he is guilty of not diagnosing a single patient with celiac and he still doesn't care for patients with DH. How archaic!!!!!! It is so depressing. All I want him to do is discuss my options for medication for my DH and other issues I'm experiencing with my stomach not getting altogether healthy. I can not afford to go back to Dr Franks as he does not take my insurance. I might just be forced to go back to him though if this local guy won't treat me. This one also doesn't absolutely accept that I have celiac and wants me to send him all of my previous lab results...so I start over again. It's amazing how little is known about this disease. their attitude is basically, you're not dying, you don't need surgery, so you'll be ok. NO! I'm not ok!!! I'm living a very debilitating lifestyle, but who cares?!

Isn't it nuts?

The best medication you can get for DH is avoiding gluten and iodine until the rashes clear. The other option is dapsone, which can be a pretty toxic med.

How long have you been gluten free? It can take a long time for the antibodies to clear the skin and you need to be very strict with the diet and very careful about CC to keep new outbreaks from happening. It is also a good idea for folks with DH to avoid topical gluten in toiletries. I hope you heal quickly but be patient and be strict as it can take some time. If you have been strictly gluten free and are still having GI issues you may have an additional intolerance or another problem that is not gluten related.

[cahill]

As a celiac and DH patient, I believe we need to be honest with ourselves and others about these conditions. It's the only way to be taken seriously by the medical community. To plant a suggestion that a DH patient stands a good chance of not being treated properly at a dermatologist I believe sends the wrong message to celiac patients. It sets up an expectation of failure before they even get to the doctor's office.

In my case The chance of not being treated properly is not a suggestion it is a reality.

I had my first outbreak of what I now know is DH at 17 , I am currently 54. It was not until WELL after my celiac diagnoses that the dermatologist would even consider that my rash was DH. You could almost see the light bulb turn on when he FINALLY made the connection.

I have dealt with doctor for 40+ years that had no clue what was happening to me.I do not think being honest and saying that most doctors do not recognize DH is setting anyone up for failure before even getting into the doctors office. I believe it is simply saying Most doctors do not recognize DH when they see it.If you are not satisfied with your doc's opinion get second opinion.

As with celiacs the treatment for DH is diet. Eat gluten free and watch the amount of iodine you consume.

[eatmeat4good]

I saw 3 heads of Dermatology at 3 different University Hospitals in 2 states. Also saw many internists....NO ONE could diagnose DH. Classic looking mosquito bite lesions, weep and ooze and burn at night. Never heal...sometimes blister sometimes welt sometimes scab...but never heal. Only diagnosis I got was neurotic excoriation. The excoriation pattern should be a clue that it is DH. Seeking medical diagnosis for 7 years did ...absolutely nothing but deplete my wallet. I had to find it here. Thank God for the people who write about their DH here...I would never have been diagnosed. Mine is on my face and the back of my neck. Sometimes on elbows and lower back. Only thing that helps is gluten free. Absolutely no trace gluten or I react for weeks. Also I MUST limit iodine...or the antibodies keep active. NO the Dr.'s are not knowledgeable about DH and I believe it is grossly and vastly underdiagnosed. Incidentally although all current literature says it is extremely rare, the original Dr. who wrote about this condition Dr. Duhring (It used to be called Duhring's Disease) said that it could occur on any part of the body including the face. He never learned the cause was gluten but he did document the tormented pain and itching associated with the lesions. Why they lost the fact that it can occur on the face is beyond me. What is also interesting is my son had it on his face at age 11. But all information said it was extremely rare in childhood and almost never occurs on the face. This deterred me from self-diagnosing the two of us for a long time. Only after several many Dr.'s couldn't figure it out and treated him for fungus repeatedly with no results...did I decide that it might be extremely rare....but it might be US! It was. The rash goes away unless any tiny trace gluten is accidentally consumed. To any who suspect DH, it is worth the try....don't listen to those who caution against self-diagnosing this. It is the only way some of us will get help. Read, Read, Read....because the Dr.'s aren't reading about this condition.

[Hopeful1950]

Eatmeat4good:

AMEN!!! None of us would recommend not trying to find a doc who can help, but you finally have to take the bull by the horns and take care of yourself. If a person has suffered for years and is not getting answers what harm can a gluten free diet do? It certainly can't hurt! If I had just been more proactive I would have saved myself 8 years of itching, oozing, stinging, scarring, suffering in long sleeves and long pants in 100% heat, isolation, depression, shame, exhaustion from not sleeping due to the itching. If I had gone gluten free 6 years ago, I would be in Hawaii right now rocking my bikini instead of locked up inside hiding my ruined skin. Instead of asking how many really have DH, maybe the question should be how many of us are lucky enough to get a diagnosis early in the course of the disease? I always wonder how many people are suffering in silence the way I have.

Thank God for this forum. I think we could give seminars to the doctors!

[Violett]

Having a DH scalp itch that drove me out of my mind is how I found out I am gluten intolerant. A derm doc diagnosed psoriasis and sent me home with 2 scrips for a shampoo and a spray that each cost $300. So $600 later. I had the money at the time and thought I had no other choice but to pay it. Going crazy with itch. I would not rest so I figured this out myself. Beer is the biggest offender. Two beers and I'm inching again. So gluten free I am. I also have Hoshimoto thyroid. Another hard to diagnos auto immune disease. Doctors and insurance need to wake up

[schelbo]

and like i said in the rest of my comment- many probably go undiagnosed because they dont know what it is.. and that even many dermatologists dont know what it is.

I've been misdiagnosed for 27 yrs.

Same symptom moving around my body. Doctors throwing steroids and creams at me.

I think it's way higher than any of us can imagine. It just has different effects on people.

Gluten is a humongous industry. It's in our National Anthem for goodness sake.

Can you imagine if the FDA banned it? War would break out!

[maitrimama]

Thx sooo much WestyDPX and Hopefull1950 for all your well written information. Your organized thoughts have helped me to see the celiac/dh conundrum in a different way. In the end it doesn't matter whether I have a formal diagnosis or not. I have choosen to be gluten free and if that positively effects my life and well being than great!

[rosetapper23]

I personally have met many celiacs....and MANY of them had DH. I have seen it be the norm rather than the exception. I recall reading how only 1% of celiacs had DH, and I just couldn't believe that figure. In my family alone, I, my uncle, and my son have DH. Of the four people at my place of employment, two out of the four celiacs have DH. I believe it is simply underdiagnosed, and when more studies are done, the true number will come to light.

[pricklypear1971]

Does anyone know of another skin disorder/rash that resolves with gluten and iodine withdrawal??? I'd love to read about it! Iodine allergy is the only other disorder I can find that responds to iodine withdrawal.

I can't figure out how they only dx it with a test that is up to 37% false negative rate. Why don't they dx it by iodine withdrawal, also?