Does Dh Always Equal Celiac?

[GravStars]

I have read many times on this forum that if you have DH, you automatically have a diagnosis of celiac disease. But then I come across this:

"DH... is an allergy of the IgA system. IgA is an antibody produced in the lining of the intestines. The usual allergy treatments are useless. The gut may also be affected by this allergy; this is called gluten-sensitive enteropathy (GSE) or celiac disease. Some people only have the GSE, some have GSE and DH and some just DH. It is not known why some develop one and not the other. "

It also says: "Complete elimination of gluten is curative, but improvement takes months."

Open Original Shared Link

I'm a little bit confused. So you can have DH but NOT have celiac disease/gluten intolerance, but the cure is the same - a gluten-free diet? Is the difference simply that a manifestation of intestinal damage may or may not be present with DH?

[darlindeb25]

Someone else may come along and tell you something else, but I have always been told that if you have DH, you are a celiac. DH is is a definitive symptom of celiac, just some of us do not have that symptom, and never will. I am not sure if my sister and I truly had DH, or just a terrible skin sensitivity, we both had terrible itching on both legs, usually in the evenings, sometimes to the point where you just wanted to scream!!! I can't speak for her, I do not have that problem anymore, unless I use a lotion with gluten, corn, soy, or oats in it.

So, in my opinion, yes, DH is celiac.

[ravenwoodglass]

I have read many times on this forum that if you have DH, you automatically have a diagnosis of celiac disease. But then I come across this:

"DH... is an allergy of the IgA system. IgA is an antibody produced in the lining of the intestines. The usual allergy treatments are useless. The gut may also be affected by this allergy; this is called gluten-sensitive enteropathy (GSE) or celiac disease. Some people only have the GSE, some have GSE and DH and some just DH. It is not known why some develop one and not the other. "

It also says: "Complete elimination of gluten is curative, but improvement takes months."

Open Original Shared Link

I'm a little bit confused. So you can have DH but NOT have celiac disease/gluten intolerance, but the cure is the same - a gluten-free diet? Is the difference simply that a manifestation of intestinal damage may or may not be present with DH?

In this country the definition of 'celiac' disease is total villi destruction. Many doctors do not recognize the systemic nature of the condition, in my opinion due to overspecialization and tunnel vision by doctors as far as other systems outside their specialization are concerned. Even celiac knowledgeable GI doctors often don't know that celiac can impact the brain, and some neuros don't recognize that the neuro problems are caused by the same thing as the patients other myriad symptoms. There are folks that can have DH and other gluten related issues like brain and joint problems that don't develop serious GI issues for years. Since the technical definition of celiac is the villi destruction these folks would be told they are not celiac. IMHO this will likely be the case until celiac is recognized by medicine more as a spectrum disorder not just a GI disorder.

[Ursa Major]

It also says: "Complete elimination of gluten is curative, but improvement takes months."

It does say that DH is cured by complete elimination of gluten. Why is that? Apparently because DH is caused by gluten intolerance. Sometimes people with DH have also villi destruction, and sometimes they don't.

The fact is, that some people with gluten intolerance have villi destruction, some have DH, some have only neurological symptoms, and some have a combination of these, or all of them.

It is just a matter of different people showing different symptoms. No two people with celiac disease appear to have exactly the same symptom combination.

So, yes, by MY definition, everybody with DH has celiac disease, while not everybody with celiac disease has DH. Hopefully the medical community at large will catch onto that fact sooner or later (and I hope it will be sooner, not later ).

As for improvement taking months, that is sometimes true, but I have heard of plenty of people who's DH was gone after a week. It does take up to two years for the gliadin deposits under the skin to be gone, and during that time people can have (usually fairly mild) outbreaks without obvious gluten ingestion.

They will get DH when being glutened, too. But normally there will be a marked improvement within a very short time after completely eliminating gluten from the diet.

[2kids4me]

The skin is our largest organ. Manifestations of various skin issues reflect a systemic problem most of the time. IMHO.

Obviously many rashes are local / contact recations ( poison ivy / detergents / cleaners etc)

Think of how our skin reacts:

allergy - hives / wheals / swelling of the tissue in the face and throat if severe

viral illness - very common (esp children) to get diffuse rash

bacterial infections ( strep throat for example) can be associated with a characteristic rash

Kawasaki disease ( a serious systemic illness / unknown cause) has characteristic rash with blisters and peeling of the feet and/or hands along with fever

Cushings disease / Addisons / hypothyroidism - often has characteristic skin changes

and many more ....

The skin is the window to what is happening inside.

Ursa Major said it better than I could have with regards to DH and celiac:

It is just a matter of different people showing different symptoms. No two people with celiac disease appear to have exactly the same symptom combination.

[ravenwoodglass]

As for improvement taking months, that is sometimes true, but I have heard of plenty of people who's DH was gone after a week. It does take up to two years for the gliadin deposits under the skin to be gone, and during that time people can have (usually fairly mild) outbreaks without obvious gluten ingestion.

They will get DH when being glutened, too. But normally there will be a marked improvement within a very short time after completely eliminating gluten from the diet.

I had extremely bad DH and this was true for me. The outbreaks stopped and the lesions began healing within a week of stopping gluten injestion. It did however take a very very small amount to activate them again. For the first 2 years gluten-free they were the first thing that would appear when I was glutened or got topical exposure. After the first two years, when the antibodies had finally cleared my skin, the DH became one of the last things to appear after exposure and the blisters are now about the size of a pinhead and resolve within a couple of days rather than the weeks it took before.

[ellen123]

I have DH and neurological symptoms but no GI symptoms. I haven't had a biopsy or endoscopy so I don't know what my villi look like. I consider myself to have celiac disease based on the fact that I have DH and neurological symptoms and that a gluten free diet has dramatically improved all symptoms overall in the 4 months I've been completely gluten free. Both the DH and neurological symptoms come back pretty quickly if I've been glutened (the DH within hours, the neurological stuff within a day). For the most part, if I've had an accidental ingestion of a small amount of gluten or get cc'd, the DH appears in a few places and the itching goes a way in a few days (the red bumps stay longer). From time to time I get a small outbreak of DH even without gluten -- I used to take ibuprofen and that set it off; or if I have a lot of seasalt or iodized salt, that sets it off as well. Once in a while I get one or two itchy bumps somewhere and have no idea why. On the sole occasion that I ate a lot of something that I thought was gluten-free but later learned was not, I had a major outbreak of DH that covered a lot of places on my body and lasted 2-3 weeks. That was the exception, however. I'm waiting for the day, somewhere down the line, when the DH will be almost non-existent.

[Franceen]

I, too, have DH that was diagnosed by an allergist by virtue of the fact that she sent pictures of my rash to U. of VA at Charlottesville Medical School and had a Dr. there confirm Celiac (he insisted on calling it Gluten Sensitive Enteropathy or just "sprue/leaky gut") because of the combination of the pictures, the fact that Dapsone caused it to abate, and the major improvement from a gluten-free diet.

I was initially what I really BELIEVED was gluten-free from Dec 05 to April 06, but continued get DH, but much less severe. I had had DH over about 75% of my body prior!!

It abated gradually, but took at least 3 months after I stopped Dapsone and Prednisone and became gluten-free vice Gluten Lite. So, by Summer 06 I was about 90% DH-Free.

There is the phenomenon called "itch-scratch-itch" syndrome, which means that you may get a rash from something systemic or contact (like Gluten or Poison Ivy) and then scratch it and the scratching causes the whole area to itch more and it perpetuates itself. I have that problem, so once I start to get a little DH it can explode and spread quickly if I scratch too much.

I discovered that once I had really become gluten-free and 99% DH-Free, I had become much more sensitive. And now when I get REALLY VERY Glutened (like IHOP scrambled eggs that they put pancake batter into and don't divulge that fact!), I now get horrible gas and diarhea for a day and then get DH a few days later (usually 3 days later). Oh, and now I can get the "brain fog" too! What a surprise that was, the first time it happened. I thought I had been poisoned with some drug! Thank goodness it didn't last very long (a few hours), but was horrifying for those couple hours - especially since it happened when I was in a meeting at work, right after eating at a restaurant where I must have been CC'd.

I have never been 100% DH-Free yet, but I'm really close now (only my right shin/ankle have DH right now).

However I have not had a problem with lotions and shampoos and makeup with gluten.

But I've checked and apparently most of what I use doesn't have any - like I don't use Aveeno and "wheat germ'd" products!

So DH is a tough nut to crack - it is hard to get rid of even after going gluten-free and it is hard to stay rid of it because CC is ALWAYS a problem unless you eat raw foods all the time.

I eat out a lot because I travel a lot for my job, so I'm subj to CC a lot, in spite of trying very hard not to be.

[KimmyJ]

DH does equal Celiac, the ONLY thing (other than pregnancy ) that helped my DH was going gluten-free. Once I was gluten-free, my rash disappeared in less than a week. I have had a few minor flare-ups since then, but nothing crazy like before.

[Lisa16]

In his book "Celiac Disease: The hidden Epidemic" Dr. Green defines DH as "celiac of the skin."

It is a definitive diagnosis when confirmed with biopsy. It is only cured by going Gluten free and is caused by the gluten anti-bodies depositiing in the skin.

I notice that this question has recurred here many times, as well as questions of the type "Is this DH?"

Maybe we need a pictoral reference attached to the site so people can see some actual outbreaks? I have noticed that there is a bit of a range in how it manifests-- even on myself. I posted one on my website....

[jparsick84]

I was told by an ignorant doctor that DH doesn't mean Celiac.

However, the brilliant dermatologist who diagnosed me (took one look at my skin and said "I think you have DH. Let's do a biopsy to find out!") told me that DH=Celiac. He might have just been saying this so I would accept the gluten-free lifestyle for life, but since eliminating gluten, wheat, barley, rye and iodine from my diet, my DH has all but gone away - therefore, I believe I have Celiac. I don't know if doctors tell DH patients that, but iodine also needs to be eliminated from the diet for those of us with DH. The iodine is the tricky one - it can lurk more in places than gluten, believe it or not! I actually bring my own non-iodized salt shaker with me when I go visiting family. Most of my accidental breakouts now are from iodine, not gluten.