This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I have DH, my mom has DH, my sister has DH, and my brother has DH . . . and I have to tell you, your rash looks EXACTLY like my rashes. I showed my mom your pictures to verify, and she thinks so too.
I can usually feel my rashes coming before they show (a painful pricking sensation), and then after they appear, they itch terribly. Iodine and dry skin makes the itching much worse. Although Benadryl doesn't make them go away, it does help with the itching.
Interestingly, those who have DH may or may not have damage to their small intestine, so you can still have DH, even though your endoscopy came back negative for Celiac.
They diagnose DH by taking a biopsy of skin right next to the blisters (not the blisters themselves); however, the results of your test may be compromised if you are already on a gluten-free diet.
I know how dreadful these rashes can be: Last summer, my entire body was covered in rashes just like yours for three whole months before I was diagnosed with DH (before that, I had patches on and off for years).
I'm finally starting to feel better after having my worst outbreak ever. (I accidentally ingested a little gluten, and boy, did I pay for it! Don't you just hate it when you know you've messed up, and there is nothing you can do except wait to see how bad the rash is going to be. Ugh)
I will definitely go get some Weleda Calendula Baby Cream and an aloe plant. (I'm not sure why, but I get welts whenever I use band-aids now.)
WheatChef, I know the itching is completely miserable, but know that you are not alone!
I agree: With new outbreaks, I have to be getting glutened by something. Things seemed to be clearing up (I had a huge outbreak on my face from Christmastime), but just last week, I had an outbreak covering my whole body. I was so close! Anyway, to finally figure out what I'm doing wrong, I started a dairy- and egg-free, unprocessed diet. (As far as I know, I don't have a problem with dairy and egg, but I read that you can have other sensitivities you didn't realize that make the healing process harder.) I have also completely eliminated iodine. Basically, all I'm eating is brown rice cooked with water, fruits, vegetables, and almonds and walnuts, which according to their packages were processed in a gluten-free facility.
I don't take any medications, and I switched all my vitamins/supplements to Country Life brand, as the entire line is certified gluten-free by the GFCO. I didn't know these things could be labeled gluten-free and still contain wheat or barley grass?! Isn't that infuriating!
I don't have a significant other, don't drink, and with this new diet, no longer have vinegar. I really hope this elimination diet helps because I love food (and absolutely hate it) and these rashes are so itchy and painful. I'm losing my mind!
Is there any way the heal the rashes faster once you get them? They take so long to go away!
I would also love to know if there is anything you can do at home to ease the rash once you've had an outbreak!
I was diagnosed about five and a half months ago, and it seems like no matter how hard I try, I keep getting very painful outbreaks. I've done my best to eliminate gluten from my diet, as well as all my personal care products, but nothing seems to work completely. I'm afraid of going on Dapsone, as I'm already anemic and have read quite a few horror stories about the side effects.
Is there anything else we can do?
I would truly appreciate any help. (At this point, I'm getting a little desperate!)