Q.  Several years ago I had a mouth full of canker sores, is that the same thing?

Dr. Papp:  "No these little ulcers, or canker sores, are not related to DH, they are their own problem, their own entity. They can be a big problem.  Cankers are a little bit  than the occasionally ventricle or erosions that you would have with DH.  Cankers are fairly common and is a whole other group of issues surrounding that, and I would say let's not put too much of an emphasis on it, because it actually distracts us from DH."

Q.  Would a person go to a dermatologist to get the biopsy?

Dr. Papp: "They may not do the biopsy unless they think that there is a a reason."

Q.  What if you told them you are a celiac?

Dr. Papp:  "The physicians are not going to do it if you are a celiac, they will do it for DH.  If you have no skin symptoms, what is the point of doing a biopsy?"

Q.  And if you have symptoms?

Dr. Papp:  "If you have symptoms then it should come to mind.  If you said, look I have Celiac, and you may not have bumps, and you have itching, and you see almost nothing on the skin, then it is worth doing the biopsy to confirm it."

"The immunofloresence was introduced in the latter part of the 1960's It was used from 1967 to 1968 to identify DH from the other similar looking diseases.  This includes a disease called Linear IgA disease which is more common in children than in adults, and can present in the exact same fashion but in a different immunofloresence pattern, and has no association whatsoever with gluten or gliadin."

Who is affected?

Dr. Papp: "The fact that we have this many people here, tells us that it is not very rare.  With rare disease we would have a very small group, we might have a quarter, a tenth of the number of people of what we have here.  There are not thousands and thousands of people in this region  that are affected.  But there are hundreds. So while it is uncommon, it is still frequent enough that these people are walking around probably undiagnosed or misdiagnosed.  Interestingly, men are more affected than women with DH.  Why that is - We don't know.  Whether it is because there is a hormonal modulation and the way DH expresses itself or other reasons we have no idea.  Sop  this is quite a substantial statistic, in other words it is just not somebody saying I have eight persons with DH, 2 or 3 people who present with DH, typically you are going to get this ratio about 2:1, maybe 1:7 to 2:2 but roughly 2:1."

"There is definite genetic association.  The more we learn about diseases that affect humans or any other organization or animal for that matter, the more we see that there may be multiple factors, but it is genetics that plays the big role.  DH is no exception.  We do not yet have the ability to identify the specific gene, or cluster of genes, that will point out to someone who was just born whether they will get DH or not.  In fact, that may not even be the case, and maybe you need some other factors to go along with as well.  Currently we look at what is called the HLA.  HLA are genetic markers of the immune system.  We know that by looking at the HLA, that there are specific clusters, where in cases for example this HLA-B8, 90% of people with DH have a genetic marker  HLA-B8.  Now, if you took about 1000 people in the general public, you would find only 15-20% have HBL-B8.  Now, just because they have HBL-B8 doesn't mean that you are going to get DH.  But what it does tell us, is this genetic makeup is showing up in the HLA marker and also showing up ultimately in the skin.  These people are predisposed in getting DH.  Probably over the next 10 or 15 years they will identify this gene, I am not sure how useful this will be, because doing genetic testing is still extremely expensive, but at least it may clue us in to what the gene or group of genes, that leads one to get DH.  And almost certainly, because we know from Sprue within that gene cluster we will also be able to identify those who have sprue, a long time before they have any manifestations."