Does Dh Always Mean Celiac?

[JaneWhoLovesRain]

Seems somewhere in all my reading I saw that there are a couple of other rare causes of DH that are not gluten related. 95% + of the time it is DH but on occassion it is something else. I've tried to find the original article or more on this but can't. Anyone know if in fact something else can cause DH?

Jane

[cahill]

Seems somewhere in all my reading I saw that there are a couple of other rare causes of DH that are not gluten related. 95% + of the time it is DH but on occassion it is something else. I've tried to find the original article or more on this but can't. Anyone know if in fact something else can cause DH?

Jane

I was " officially" diagnosed because of a positive DH biopsy and my response to a gluten free diet .

My understanding from my GI doc and my Dermatologist is that DH = celiac.

[pricklypear1971]

Other things can trigger an outbreak - salicylates, iodone, I've seen bromines mentioned...but the underlying cause is gluten. I have seen mention of other skin diseases with similar etiologies mentioned.

Are you looking for differentials or an alternative cause for the diease?

[cahill]

Other things can trigger an outbreak - salicylates, iodone, I've seen bromines mentioned...but the underlying cause is gluten.

I agree with this.

I have been gluten free for a long time and if I consume large amount of iodine I will have a breakout. The iodine seems to "aggravate" or "activate" the antibodys in my skin .

And any and I do mean ANY CC ( gluten cross contamination )will trigger a break out.

[Lisa]

DH = celiac.

But Celiac Disease does not = DH.

It's my understanding the DH is a gluten intolerance which manifest itself on the skin. You can have both Celiac and DH and the RX is the same.

[IrishHeart]

Yes, DH is the skin manifestation of Celiac Disease.

And yes, it's true that not everyone with Celiac has DH, but everyone with DH has Celiac.

From the Univ. of Maryland Center for Celiac Research

"Is it necessary to have an intestinal biopsy to confirm the diagnosis of Dermatitis Herpetiformis (DH)?"

A skin biopsy is sufficient to confirm the diagnosis of DH.

DH is the skin manifestation of celiac disease.

[Lisa]

DH is the skin manifestation of celiac disease.

In ALL cases? That's what the Jane was inquiring about.

This is what I have found:

Sprue (gluten enteropathy)

Wheat/Gluten/Gliadin intolerance

Idiopathic

Thyroid disorders

BTW - I love the name JaneWhoLovesRain.

[IrishHeart]

In ALL cases? That's what the Jane was inquiring about.

This is what I have found:

Sprue (gluten enteropathy)

Wheat/Gluten/Gliadin intolerance

Idiopathic

Thyroid disorders

BTW - I love the name JaneWhoLovesRain.

I love that name, too!

That's what I read: A diagnosis of DH is a DX of Celiac.

It does not exclude a thyroid disorder as well, but DH IS Celiac.

I'll keep looking....

[IrishHeart]

Source:

Dermatitis Herpetiformis: Skin Manifestation of Celiac Disease. National Digestive Diseases Information Clearinghouse. Accessed: Sept. 5, 2010. Open Original Shared Link

Question: If I have dermatitis herpetiformis, do I also have celiac disease? I've been diagnosed with the skin rash dermatitis herpetiformis. Does this mean I also have celiac disease and must follow a gluten-free diet?

Answer:

In a word, yes - if you have a diagnosis for dermatitis herpetiformis and your celiac antibody blood tests also came back positive, you have celiac disease. If, however, your blood tests for celiac disease came back negative, your dermatologist may refer you to a gastroenterologist for an intestinal biopsy, considered the gold standard for celiac disease diagnosis.

About 90% of dermatitis herpetiformis patients have a positive intestinal biopsy.

In celiac disease, your body mistakenly attacks the villi in your small intestines. Dermatitis herpetiformis represents another autoimmune reaction from gluten - instead of attacking your intestinal villi, your body's immune system mistakenly attacks your skin. This attack produces an intensely itchy rash with water blisters and itchy red bumps which occurs most frequently on the elbows, knees, buttocks, lower back and the back of the head.

Dermatitis herpetiformis affects between 15 and 25 percent of people with celiac disease, mainly adults, and many of people these have no gastrointestinal symptoms. Although the medication dapsone can help to clear up your rash, you'll need to stay on the gluten free diet long-term to prevent celiac disease complications.

[IrishHeart]

Jane, did you ever call the GI doctor I recommended? He is the best guy in this area!

[pricklypear1971]

It is not uncommon for gluten sensitive/Celiacs to have a variety of skin issues. Not all are DH.

There are other autoimmune diseases linked to skin issues.

There are other diseases linked to DH, but those alone don't cause DH. The Celiac component causes DH.

Thyroid/Hashimotos seems to be the most frequently linked to DH (other than Celiac). Which, if you back into it makes sense since there's a thought that Hashis is caused by gluten/Celiac.

There's also the whole world of people who are pretty sure they have a gluten related rash that don't have a + DH biopsy for various reasons. No biopsy, bad biopsy, etc. so quite frankly I'd bet the rate of DH is much higher than actually reported or DH is just one type of gluten rash.

[IrishHeart]

It is not uncommon for gluten sensitive/Celiacs to have a variety of skin issues. Not all are DH.

.... so quite frankly I'd bet the rate of DH is much higher than actually reported or DH is just one type of gluten rash.

Yes, I agree totally.... and my GI doctor told me flat out....even if your oozey scalp scabs are not "classic DH", it is still related to Celiac. They are all gone, but only reappear if I am glutened. I also have severely burning skin--from head to toe. (4 years now--ugh!)

I also read that DH is much more common in men. The only way my cousin's wife even figured out her elderly Dad had celiac was because the poor guy suffered from this "rash" his entire life! When her sister was DXED, she learned DH is a symptom and put it together.

It is also true that the majority of people with DH have minimal or no GI symptoms, they just think they have a rash, and therefore, probably never go to a GI doc. So many more UnDXed celiacs out there!

In that case, only a pretty smart dermatologist would know the DH-celiac connection.

A good celiac-savvy GI doc will (should?) know DH when she/he sees it.

[pricklypear1971]

Yes, I agree totally.... and my GI doctor told me flat out....even if your oozey scalp scabs are not "classic DH", it is still related to Celiac. They are all gone, but only reappear if I am glutened.

I also read that DH is much more common in men. The only way my cousin's wife even figured out her elderly Dad had celiac was because the poor guy suffered from this "rash" his entire life! When her sister was DXED, she learned DH is a symptom and put it together.

It is also true that the majority of people with DH have minimal or no GI symptoms, they just think they have a rash, and therefore, probably never go to a GI doc. So many more UnDXed celiacs out there!

In that case, only a pretty smart dermatologist would know the DH-celiac connection.

A good celiac-savvy GI doc will know DH when she/he sees it.

I think they will know DH they've id'd before. Should be the same but it isn't. I think my Derm suspected it but it was so disfigured from the immune suppressants he didn't pick it up visually - though he did ask about symptoms that in retrospect I know was feeling around for DH.

I think a savvy dx depends on putting together the ai connection (if there's one to be made- in my case there was) along with how the rash acts.

It's all about how it acts.

[Lisa]

As Jane inquired, you cannot say that all DH is attributed to Celiac Disease, exclusively, just as you can't say that all villious atrophy is attributed to Celiac Disease, exclusively.

DH is most commonly associated with Celiac, although some rare circumstances, it can be attributed to other sources. And I differ imho, that DH and Celiac are the same animal. Very closely aligned, yes.

I don't have the energy nor the time for debates. But, I wanted to clarify my point. Maybe we are just talking semantics. Continue on.....

[JaneWhoLovesRain]

In ALL cases? That's what the Jane was inquiring about.

This is what I have found:

Sprue (gluten enteropathy)

Wheat/Gluten/Gliadin intolerance

Idiopathic

Thyroid disorders

BTW - I love the name JaneWhoLovesRain.

Yup, that's what I mean - are ALL (100%) cases of DH because of gluten/celiac or is there something else that can cause it. I know other things, such as iodine, can aggravate it but I was wondering if there is something else that actually casuses it that has nothing to do with celiac or gluten.

I guess the reason I am asking is because I should be getting my biopsy results tomorrow and if in fact, I am told I have DH I want to know if that means a 100% certainty that I need to be 100% gluten free or if there is a possibility something else is causing it and further tests need to be done for that.

Oh, and thank you for loving my name. I love rainy days, crazy isn't it? Sunshine seems to aggravate my vertigo/off balance problems!

[JaneWhoLovesRain]

Jane, did you ever call the GI doctor I recommended? He is the best guy in this area!

I haven't contacted him yet. I called my dermo's office and they were able to change my appt to the next day when I told them how miserable I was. I figured that was the quickest way I would be able to get it biopsied. Should I find I actually do have dh, I will be calling the doctor you suggested.

I'm not 100% confident the biopsy was taken correctly. I had to help her along a little bit She was convinced I don't have dh and was taking two samples to test for scabies or whatever. I asked her if this would show dh. Oh yes, she said. I'm glad I did my homework, and reminded her that she had to take it from a clean area near the rash. So then she decided she would do a third, she left and came back with a special kit they have for testing for dh. If I didn't ask she wouldn't have done that. I've already received the insurance EOB and that shows TWO pathology charges only, so I don't know what happened to the third.

After 1 month with a little itch and almost 3 months of unbearable itching my skin off my rash is almost 100% gone!!!! Finally, so glad. The bad thing about no more rash though, is that if I happen to test negative for anything then there is no more rash to biopsy and I will never know for sure what I have.

[JaneWhoLovesRain]

As Jane inquired, you cannot say that all DH is attributed to Celiac Disease, exclusively, just as you can't say that all villious atrophy is attributed to Celiac Disease, exclusively.

DH is most commonly associated with Celiac, although some rare circumstances, it can be attributed to other sources. And I differ imho, that DH and Celiac are the same animal. Very closely aligned, yes.

I don't have the energy nor the time for debates. But, I wanted to clarify my point. Maybe we are just talking semantics. Continue on.....

Oh gosh, I don't want to get into a debate either, but this is what I am interested in, if there are any other conditions that can cause DH. I want to cover all bases should I test postive for dh. I've been misdiagnosed before and unfortunatly know that doctors make mistakes. If a doctor is going to assume I have celiac bases on a positive dh biopsy when in fact I could have something else I want to know so I can get properly tested for the something else.

[IrishHeart]

As Jane inquired, you cannot say that all DH is attributed to Celiac Disease, exclusively, just as you can't say that all villious atrophy is attributed to Celiac Disease, exclusively.

DH is most commonly associated with Celiac, although some rare circumstances, it can be attributed to other sources. And I differ imho, that DH and Celiac are the same animal. Very closely aligned, yes.

I don't have the energy nor the time for debates. But, I wanted to clarify my point. Maybe we are just talking semantics. Continue on.....

I think we are all on the same page here. No one is arguing about the Celiac/DH connection --we were just discussing it---but none of us can find any other causes for it.

I can keep looking.

I gave you the answers I could find (see above) from the people who are considered experts.

They all say "DH is the skin manifestation of Celiac."

If Jane is the rare person with DH that is caused by something OTHER than celiac, I guess she'll have to find a specialist to figure it out. She has been gluten-free for a year and I doubt a biopsy of her intestines--or the area around her lesions-- will yield a conclusive celiac DX.

It is my understanding, however:

"When a person with celiac disease consumes gluten, the mucosal immune system in the intestine responds by producing a type of antibody called immunoglobulin A (IgA), explains John Zone, M.D., chairman of the Department of Dermatology at the University of Utah School of Medicine. As IgA enters the bloodstream, it can collect in small blood vessels under the skin, triggering further immune reactions that result in the blistering rash of DH."

[IrishHeart]

I want to cover all bases should I test postive for dh. I've been misdiagnosed before and unfortunatly know that doctors make mistakes. If a doctor is going to assume I have celiac bases on a positive dh biopsy when in fact I could have something else I want to know so I can get properly tested for the something else.

Very wise of you to investigate !! I wonder-- did the doctor say that being on a gluten-free diet would affect the skin biopsy at all??

[IrishHeart]

Here is what I found:

List of causes of Dermatitis herpetiformis

Following is a list of causes or underlying conditions that could possibly cause Dermatitis herpetiformis includes:

Celiac disease

To research the causes of Dermatitis herpetiformis, consider researching the causes of these diseases that may be similar, or associated with Dermatitis herpetiformis:

Sprue (gluten enteropathy)

Wheat/Gluten/Gliadin intolerance

Idiopathic

Thyroid disorders

Meaning the CAUSE is celiac, yet other conditions may be associated, but 2 ARE also gluten intolerance, 1 is "unknown" and the other is thyroid disorder.

To me, the phrase "associated with" is not the same as "causes"

IMHO

Jane, do you have a thyroid condition???

[IrishHeart]

Theory of What Causes DH

There is within the immune system a genetically-based sensitivity to gluten. When gluten is in the diet, the body makes IgA. The IgA or the Iga-gluten (antigen-antibody) complex circulates in the blood stream. The IgA or the complex settles in the skin causing the intense reaction labeled dermatitis herpetiformis.

Celiac Sprue association

[IrishHeart]

I'm tapped out of ideas!

Let us know what happens, Jane!

[Lisa]

Irish, we choose the same source to site.

My point being the words "associated" and "similar" makes my point. It does not indicate conclusive. That's what I'm saying.

[JaneWhoLovesRain]

IrishHeart, thank your for your research. I really appreciate it. Looks like 99% of the time DH most likely = celiac. I don't have any known thyroid problems - all routine thyroid tests have always come out normal.

The doctor (actually it was a nurse practioner) didn't say anything about being on or not being on a gluten-free diet. Since she is so convinced it isn't dh she probably didn't care one way or the other.

If I do have dh then I must have been receiving cc from somewhere, else why the rash after being gluten-free for two years? I'm hoping that if there is enough gluten in me to cause the rash there is enough to make the test positive. (I'm not willing to load myself up to be restested in a couple months. I can handle the rash and can handle the intestinal issues. What I can't handle is the possibility of a vertigo attack.)

I'll let you know tomorrow what happens.

[IrishHeart]

I am not sure why you still have DH if you are gluten-free. That is perplexing. (and maddening for those of you who still suffer from it, despite your dietary compliance, I am sure )

I did read this: "A strict gluten-free diet is the only treatment for the underlying celiac disease. Even with a gluten-free diet, dapsone or sulfapyridine therapy may need to be continued for 1–2 years to prevent further DH outbreaks." (Nat'l Inst. Of Diabetes and Digestive and Kidney Diseases)

I had painful sores and terrible itching, but nothing like what all of you and EatMeat4Good describe and my heart aches for you.

FWIW, Dr. Green's book also states emphatically that if you have DH, you have celiac disease.

The ONLY way to control it is through the gluten free diet and with topical medications--and meds like dapsone. (again, according to his book)

As for the association with thyroid disorders, his book also states: studies say that "20-30% of patients with DH also have thyroid abnormalities, as many do not have gastro symptoms." (Chapter 11)

Do other members who are 2 years gluten-free tell you they still have eruptions of it? (I know some who are only 1 year gluten-free still do.)

Whatever the case, I hope you get some real answers tomorrow!