[Jnkmnky]

So, dh IS a component of celiac disease, right? Now, is it just one of the 200 symptoms of celiac disease? Or can you have dh independent of celiac disease? Can you have NO villi damage and still have dh? Would a positive test for celiac disease be a positive dx of your skin rash? Or do you need a separate test for dh? Can you have controlled celiac disease and use a skin cream with wheat and have ONLY a skin reaction but no villi damage? And if you think of any other answers to questions I SHOULD ask... feel free to give them to me. Thanks.

[Rachel--24]

Jnkmnky, on Sep 14 2005, 02:53 PM, said:

So, dh IS a component of celiac disease, right?  Now, is it just one of the 200 symptoms of celiac disease?  Or can you have dh independent of celiac disease?  Can you have NO villi damage and still have dh?  Would a positive test for celiac disease be a positive dx of your skin rash?  Or do you need a separate test for dh?  Can you have controlled celiac disease and use a skin cream with wheat and have ONLY a skin reaction but no villi damage?  And if you think of any other answers to questions I SHOULD ask... feel free to give them to me.  Thanks.
<{POST_SNAPBACK}>

All I know is you can have DH and have no villi damage but you'd still have to maintain a gluten-free diet. I'm pretty sure a skin cream could cause a skin reaction but no villi damage...unless the cream got into your mouth. I don't know the rest.

[frenchiemama]

As far as I know, you cannot have DH independant of celiac disease. You can have DH with no villi damage, but it could still occur later in life.

A dx of celiac disease is not necessarily a dx of DH, as you can have a skin allergy with a similar looking rash.

I don't know about the skin cream, I stopped using any gluten-containing products as soon as I found out. I think that you have to ingest the gluten to create the IgA antibodies that deposit under the skin and cause DH, but some people do say that they get a contact reaction.

[Kasey'sMom]

You might want to check out The Dermatitis Herpetiformis Online Community. The web address is www.dermatitisherpetiformis.org.uk They have lots of information about DH including the celiac disease connection , pictures, cases studies etc.

Hope this helps!

[Jnkmnky]

I'm confused. I thought you couldn't have celiac disease unless you have villi damage. So ,you cannot have dh without celiac disease, but you can have dh and no villi damage? Could it be that dh is a form of sensitivity that hasn't morphed into full blown celiac disease yet? A friend of mine.. *two friends this week asked for advice on celiac disease and suddenly I feel like I know NOTHING.* Especially as it relates to their individual situations. One has a child with adhd and speech issues and other stuff, the other has a child with a really nasty rash (Long history, she looked at pics of dh and feels strongly it's a good chance with all things considered) and some family history of various stuff that smacks of celiac disease...plus, they're a great deal of irish and the dr suggested wheat. I'm trying to be helpful, but I feel like celiac disease is so large with it's 200 symptoms and my son's were limited to three of those and I really want to be helpful, but I feel useless and suddenly clueless. But my local store finally got in the gluten free products I've been haunting them for for the past three months! I've made some progress in awareness!! But I feel like the little gaspy faced guy

[Rachel--24]

I think you can have DH before actual villi damage takes place so therefore I guess you wouldn't be considered "celiac" but would still have to be gluten-free to relieve DH and/or future damage. I think DH is a symptom of celiac even if its not "full blown" yet.

[drannesimmons]

DH is certainly possible with no villi damage. A very old (and seldom used, from my inquiries) test to cause a DH skin reaction was iodine applied directly to the skin (I believe on some sort of patch).

I definately have flare-ups from external contact with gluten, not just ingestion.

I have had DH since puberty and finally figured it out at the age of 50. Thus far I have not been successful in locating medical care providers who are more than mildly curious and in no way helpful.

Suggestions for doctors in south Florida welcome--dermatology, gyn/breast, heart, GI--the full range. My basic approach for the past 11 months is to quit all but three essential medications--and those I left off for a couple of months and added back one at a time in elimation-testing fashion.

[dh mom]

Hi,
DH is NOT a component of celiac. It is a seperate disease with it's own diagnosis. A biopsy of the skin, not on the lesion, but within a half of an inch or so of it, must be taken and tested. Usually this is a dermatologist. Before you waste your time, ASK if the doc has ever seen it, otherwise, keep looking and try to find another derm doc who has. Most docs have never heard of DH unless you are in a big city.
DH technically can exist without the person being celiac as well. (It would be very rare). If however,that is the case, then at some point in your life, the possibility exists that the DH will go into a "honeymoon' phase, and you could eat gluten again without the rash. Be sure to get scoped for celiac after being back on gluten for 6 months. If you have celiac, the door is shut forever - no more gluten-ever. Also, THERE IS NO CREAM OVER THE COUNTER, WHICH WILL TAKE CARE OF DH. As far as moisturizers go, I believe you have to ingest the wheat. Rubbing cream with gluten on your arm is not going to affect your intestines. The only thing that I am aware of which brings the DH rash up is rubbing iodine on the skin. Good luck, I hope this helped. ps: DH has a very black and white test result. If the doc tells you that it is DH, continue on to your gastrointerologist and get a biopsy done of your intestines BEFORE you go off of the wheat. Once you've been off of gluten for a couple of months, it is hard to test for celiac as your intestines will have started healing themselves - if you have celiac. Intestines aren't used in testing for DH, DH is a skin biopsy from your arm or knee.

[lovegrov]

According to all experts I know of, DH is basically a skin form of celiac. The NIH now says that if you have DH, don't even get tested for celiac disease because you either have it or you will have it. Period. I had DH for 20 years before I got extremely ill from celiac.

richard

[lovegrov]

Rachel--24, on Sep 14 2005, 12:06 PM, said:

I'm pretty sure a skin cream could cause a skin reaction but no villi damage...unless the cream got into your mouth. I don't know the rest.

Although there are those who say a skin cream causes them a skin reaction, everybody I know personally who had DH has absolutely no reaction from touching flour or using anything with wheat in it. This includes me, my father, and a few other people.

richard

[OptimisticMom42]

lovegrov, on Sep 16 2009, 04:43 AM, said:

Although there are those who say a skin cream causes them a skin reaction, everybody I know personally who had DH has absolutely no reaction from touching flour or using anything with wheat in it. This includes me, my father, and a few other people.

richard

Hello Richard,

I always like reading your posts because you are very direct and informative. On this issue though I would like to add that IMO celiacs should not handle gluten containing flours. Just breathing the dust is enough to make many of us very ill. And the chances of cross contamination are just scary.

Thanks RA

[ChemistMama]

Interesting link:
DH Book page

It says that 66% of DH patients have villi damage; however, this doesn't mean they have celiac disease symptoms. I never did.

DHmom, DH and celiac are sister diseases. In celiac, the antibodies in your system attack your villi; in DH, those same antibodies attack your skin. The new drug that's being developed at U of Maryland (AT1001) keeps the gluten from going into your bloodstream, this prohibiting the formation of antibodies, and thus no DH or celiac disease symptoms (that's straight from Fasano himself, I asked after a talk he gave in my town).


As for wheat containing skin products, I personally don't use makeup/lotion/lip gloss that contains wheat, only because I'm afraid that I"ll ingest it. I can touch wheat with no problem. I personally think those that do react to wheat on their skin also have a skin allergy, since DH is a disease where the antibodies that destroy your skin come from you blood stream. I know I'll get arguements, about this, but the antibodies that cause DH and celiac disease are formed in the intestines, which then attack your intestines or skin. How would the gluten touching your skin know that it should travel to your gut and back again to inflame the same place? Just the scientist in me wondering how this stuff works.

[momxyz]

That was an interesting link. But I have a question. The author states that without drugs, and just being on a gluten free diet, that it will usually take about 2 years for the rash to clear up!

How does this jive with what people here experience?

My DH is self diagnosed - a persistent and very itchy rash that started in Oct 08 on my ankles. This is now my 40th day on a gluten free diet.... prior to the diet topical over the counter creams provided minor and short lived relief.... but now the diet and the hydrocortisone cream really seem to be doing something. The sores inflicted from scratching are almost healed. The cropping up of new spots has dropped off noticeably and they are smaller and are going away faster. most of the spots that were really bright red are much less angry looking.
Granted, my ankles are still mottled with brownish or purplish spots now.... but I was hoping that they might be more presentable by next summer. I would prefer not to take drugs but 2 years?!

[ChemistMama]

momxyz, on Sep 18 2009, 04:20 PM, said:

That was an interesting link. But I have a question. The author states that without drugs, and just being on a gluten free diet, that it will usually take about 2 years for the rash to clear up!

How does this jive with what people here experience?

From what I've read in other places, and from other's experiences in my support group, DH can clear up in anywhere from a few months to 2 years. I've been gluten-free for 9 months and took Dapsone for several months this summer. I have no new breakouts at all, but some old sores on my leg are taking a looooong time to heal, over a year, and now I have big purple scars all over that leg. I have no scars from my newer outbreaks at all. Another friend had undiagnosed DH on one ankle, and it took almost a year for the sores to finally heal. I think it depend on how long you've had an outbreak in a specific spot.

I've also heard that for the first 1-2 years you can also be very sensitive to being glutened, a small amount can cause a breakout. You may want to ask a dermatologist about topical dapsone, it doesn't have the side effects that the oral drug has (or at least in to a much smaller degree). I've used some on my still healing sores and it seems to help calm things down a bit.

[momxyz]

ChemistMama, on Sep 22 2009, 04:38 PM, said:

From what I've read in other places, and from other's experiences in my support group, DH can clear up in anywhere from a few months to 2 years. I've been gluten-free for 9 months and took Dapsone for several months this summer. I have no new breakouts at all, but some old sores on my leg are taking a looooong time to heal, over a year, and now I have big purple scars all over that leg. I have no scars from my newer outbreaks at all. Another friend had undiagnosed DH on one ankle, and it took almost a year for the sores to finally heal. I think it depend on how long you've had an outbreak in a specific spot.

I've also heard that for the first 1-2 years you can also be very sensitive to being glutened, a small amount can cause a breakout. You may want to ask a dermatologist about topical dapsone, it doesn't have the side effects that the oral drug has (or at least in to a much smaller degree). I've used some on my still healing sores and it seems to help calm things down a bit.

Thanks, Is the topical dapsone very expensive?
The spots that are taking the longest to heal are the older ones as well!