<<Disclaimer: Verify this information before applying it to your situation.>> I would like to thank you all for your responses to my questions about Dermatitis Herpetiformis. I received 37 responses and a few web sites which I will add to this letter for those of you who have asked me to summarize the information that I received. I am not sure if the rash is caused by an allergic reaction to wheat or a auto immune reaction to gluten yet but someone sent me a web site that described a test that a doctor or dermatologist would do for DH. It involved dropping iodine on the skin to form a blister for the doctor to test. Being a adventurous person, I tried the test with regular iodine found in a drug store. I know that it is not the iodine that I am allergic to because I used it alot as a child on scrapes and cuts. I was amazed at how fast my skin reacted to the iodine. Within two hours it had swollen and by the next morning there was a itchy bump. Still not proof positive by any means but it was interesting. I tried the test on my children and husband and nothing happened so it does indicate that there is something different about me that caused such a quick reaction. Many people said that the doctor could have tested the rash to find out what it was...I asked and he refused. I would change doctors but he is actually the best in the area. I may decide to make the four hour trip to see a Dermatologist eventually but for now I will wait to see what happens when I go back on the gluten free diet again. Here are a few of the responses: ------------------------------------------------------------------------- On this Celiac Forum: http://forums.delphi.com/celiac/messages it is stated that you have to go to a dermatologist and he will take a sample of DH and analyse it. If it is DH, you dont need to go through an endoscopy, as you automatically are Celiac. Ask to Abigail there or Chris. ------------------------------------------------------------------------- It appears as a raised bump sometimes with a small red dot in the middle, not quite blister like, but it is ridged and INTENSELY ITCHY... In fact it is SO itchy that when it is scratched until raw and bleeding it feels better. If the bumps are allowed to mature without scratching them off (THIS IS VERY DIFFICULT TO ACCOMPLISH) they become very painful and still itchy at the same time... So in my opinion it is better to scratch them off. Unfortunately doing so increases your chances of skin cancer. ------------------------------------------------------------------------- The best pictures I know of DH on the net are found at: http://www.dermis.net/bilddb/diagnose/englisch/i694000.htm These pictures are quite graphic. DH can cause insane burning, itching, or both. Although there are some classic areas, it can appear almost anywhere. ------------------------------------------------------------------------- Below is an article by Dr. Papp. Dermatitis Herpetiformis, Dr. Kim Alexander Papp Dr. Papp is a consultant at St. Mary's, Grand River, and Listowel Memorial Hospitals. He is also President of Probity Medical Research Inc. The first mention of Dermatitis Herpetiformis (DH) in the literature was in 1884 in Dhring. The connection to wheat was made in Dreke, Holland in 1941. It is an uncommon, but not rare, disease that affects males twice as often as females. It is found in 10% of first degree relatives. There is a genetic association; 90% of DH patients have HLA-B8 vs. only 15% of the general population. HLA-DRw4 and HLA-DQw2 are also associated with some DH patients. DH normally is found on elbows, knees, shoulders, buttocks, sacrum, posterior scalp, and face. While it is unusual, it can also show up on the hands or inside the mouth. It presents as clear blisters that itch very badly. [One patient described the itch "...like rolling in poison ivy naked with a severe sunburn, then wrapping yourself in a wool blanket filled with ants and fleas."<1>-ed] The original diagnosis of DH was done by giving Dapsone, a leprosy drug, and noting any improvement. Today, the "gold standard" for diagnosing DH is a skin biopsy with immunofluorescence. (A plain skin biopsy is not sufficient.) Most DH patients also have villi damage in the small intestine and lymphocyte infiltration of the intestinal wall, and IgA/IgG antigliadin antibodies in the bloodstream. However, there is really no need to perform a small bowel biopsy or test for blood serum antibodies; the skin biopsy with immunofluorescence provides a definitive diagnosis. Dr. Papp indicated that about half of his patients are diagnosed after having their symptoms recognized and pointed out to them by other DH patients. DH is not an allergic reaction; a different mechanism is involved. It is caused by antibodies to the gluten found in wheat, rye, and barley. The causes of DH flares include large quantities of iodides (some iodine is needed in the diet), kelp, shellfish, non-steroidal anti-inflammatory agents (such as aspirin), gluten, stress, and some cleansers. What else looks like DH? * DH can be misdiagnosed as psoriasis, or the patient may have both conditions. * Linear IgA disease--the immunofluorescence pattern is different, but it looks and feels the same as DH to the patient. * Allergic contact reactions. DH is treated by adherence to a gluten-free (GF) diet. The skin lesions can be treated with either a sulfone (Dapsone) or sulfonamide (Sulfapyradine) drug. In about 85% of the cases, at least a year on a strict GF diet is needed before DH is resolved. In rare cases DH lesions clear up after only a few weeks on the GF diet. Dapsone can have side effects, though these are not common. It can alter blood chemistry, causing anemia. Those of Mediterranean or African ancestry can have sudden red blood cell count drops [known as G6PD Deficiency--Dr. Alexander]. Other complications include tingling fingers and neurological problems. Ideally, if the patient is on medication there would be monthly lab tests to monitor the dosage and effect on the patient. This almost never happens. The GF diet takes a long time to bring DH under control because it requires time to clear the IgA and IgG from the blood. So even if one is on a GF diet and/or taking Dapsone, technically one has DH. Like an alcoholic, one always has the disease. Dr. Papp concluded his presentation by answering a few questions from the audience. Q: How soon after ingesting gluten or iodine will a flare occur? A: It varies tremendously. With iodine, it usually takes several days of consumption before a flare occurs. Q: What effect does stress have on a DH patient? A: It intensifies any symptoms the patient is experiencing. Q: What effect does iodine on the skin have? A: It really has no effect; it doesn't penetrate enough. Iodine must be consumed to cause a DH flare. Q: After several years on a GF diet with no flares, is iodine still a problem? A: No. ------------------------------------------------------------------------- Find a dermatologist who knows about Dermatitis Herpetiformis, DH. Not all of them do. He can perform a biopsy. It is a simple procedure and done in the doctors office. However, the analysis of the biopsy is highly specialized and not all pathology labs can perform the examination of the tissue sample to identify antibodies. The examination must be an immunofluorescence examination. Many times the pathologist may not specify DH in the lab report but just list the antibodies. The doctor must be capable of interpretation of the antibodies as they relate to DH. If done properly, this test is said to be 100% accurate. The antibody in the skin for diagnosis is called IgA. If an individual has DH, the doctor usually takes a biopsy of one of the blisters caused by DH or a piece of the skin near the blister. Some dermatatoligists use an iodine patch to cause a blister that can be used for a biopsy. I have been told that if one has DH, a pinch or piece of skin that does not show blistering or a rash can be used. The IgA antigen shows up in good tissue. ------------------------------------------------------------------------- For images of severe cases see: http://www.GFlinks.com/#DH This is from Peter Thompson's web page at http://www.demon.co.uk:80/webguides/nutrition/diets/gluten-free/ and was written by Dr. Joseph Murray (University of Iowa Medical School, now Mayo Clinic): This is what my Merck Manual (16th ed.) says: Osymmetrically on extensor aspects (elbows, knees, sacrum, buttocks, occiput). Vesicles and papules, common on the face and neck, occur in about 1/3 of patients. Itching and burning are severe, and scratching often obscures the primary lesions. Regarding Dapsone & DH: * Some found Soap, Dishwashing soap, shampoo & bubble bath to be the gluten containing *culprit*. * Topical steroids can be used (but many found these useless) * Atarax can be used to clear up the rash * A bout w/ DH indicates there is a hidden source of gluten being ingested. Go back to the drawing board and start all over with an elimination diet. * Keep a food log to ferret out the problem * It can take 18 months for all the deposits under the skin to dissipate. * Dapsone is a powerful & dangerous drug. It can cause liver damage & mess with your blood counts. Most gastroenterologists don't prescribe it- will refer to a dermatologist. * Many dermatologists have no real clue about the necessary diet to get to the source of gluten. DH can be a slippery slope in between Celac GF diet & an after-the-fact treatment of gluten exposure. * One listmate took Dapsone for a prolonged time, and said it did serious damage to his bowel system (not on a GF diet- derm. told him it was not necessary- the Dapsone would take care of it-WRONG!). * Once on the GF diet & cleared of the DH, no other treatment other than the gluten free diet should be necessary. * One listmate takes an antibiotic and niacinamide (B3) when they get these bumps, because they do hurt. * DH can be diagnosed with a simple painless skin biopsy. * With my DH I am also sensitive to Soy. (Soy is gluten Free but a large number of celiacs are also sensitive to it. Soy is like gluten, it lurks everywhere, soy sauce, cheese, fillers, etc) *Some need to take Dapsone on ocassions due to a mystery gluten sometime lurking in foods. * In my opinion, if your Dermatologist is good he/she will give caution on how to take Dapsone.Too much for too long time will really mess up your blood, that's why you must have blood tests regularly. There are two other types of medications that are possible to help DH and they are a sulphur type. I've heard of a prescription topical cream that can also help with the itching. I've never been helped using these. *As far as the areas to the body the DH effects, well it can appear anywhere it feels like it. This information I received from Dr. Kari Connelly, Dermatologist with UCSF Medical at a Celiac meeting in Oakland, California. Normally it just shows up on the upper arm, buttock, back of the knees, on the scalp around the hairline. Well, I've got it in many other places. There are a lot of cases of eczema that are misdiagnosed when they are actually DH. ------------------------------------------------------------------------- Thanks again for all of the responses. This is a great group and I am so glad that I have had the opportunity to join. Good health to you all. Irene Young South River, Ont.Can.