37 replies to this topic

[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!

[pricklypear1971]

Some people have other food sensitivities that seem to activate it (corn, salicylates, etc.). I've heard of people being on dapsone for years before DH recedes enough to be controlled just with gluten-free.

Sometimes it can pop up without reason, even gluten-free, as long as there are iga antibodies in the skin. It can be assumed some people take longer for the antibodies to leave the skin than others??

Also, some people here seem to be reporting activation with a glutening - people who never remember having a rash before.

[a1956chill]

As for the association with thyroid disorders, his book says 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 do.)

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

I have been gluten free for 2 1/2 years and I still have eruptions. Mine seems to be aggravated mostly by iodine.
And since I have Hashimoto's and am on thyroid meds ,iodine is not something I can totally eliminate from my diet.
I walk a VERY fine line between getting enough iodine for my thyroid health and not to much to set off my DH. The wonderful world of a celiac


My daughter who is gluten free never had DH until after her celiac diagnoses BUT she was diagnosed with psoriasis for many years

[a1956chill]

I'll let you know tomorrow what happens.

Please let us know how it goes

[Lolli]

As horrific as DH has been, I'm thankful because I would have never known something was seriously wrong.

[squirmingitch]

As horrific as DH has been, I'm thankful because I would have never known something was seriously wrong.

I feel the same way Lolli. I count dh as both a blessing & a curse.