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How Many Have Dh, Really?


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31 replies to this topic

#1 itchy

 
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Posted 15 June 2011 - 07:57 AM

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.
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#2 lovegrov

 
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Posted 15 June 2011 - 08:09 AM

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

richard
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#3 cassP

 
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Posted 15 June 2011 - 06:48 PM

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 ?????
  • 2
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#4 lovegrov

 
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Posted 16 June 2011 - 06:25 AM

Make that "studies" I have seen.

richard
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#5 itchy

 
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Posted 16 June 2011 - 06:53 AM

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

 
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Posted 12 July 2011 - 01:04 PM

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.
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#7 cassP

 
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Posted 12 July 2011 - 09:20 PM

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.
  • 2
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#8 WestyPDX

 
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Posted 12 July 2011 - 10:33 PM

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.
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#9 lovegrov

 
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Posted 13 July 2011 - 06:08 AM

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
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#10 WestyPDX

 
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Posted 13 July 2011 - 07:31 AM

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.
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#11 Hopeful1950

 
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Posted 14 July 2011 - 10:03 AM

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.
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#12 Jenniferxgfx

 
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Posted 14 July 2011 - 12:27 PM

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.
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glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.


#13 momxyz

 
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Posted 14 July 2011 - 01:44 PM

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.
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#14 ravenwoodglass

 
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Posted 18 July 2011 - 04:28 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#15 beachbirdie

 
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Posted 20 July 2011 - 09:53 PM

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.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012




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