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 think the only way your doc would have been able to tell you definitely that it was DH was with a punch biopsy - and believe me, after having those on my knee and top of my foot, you wouldn't want that done to your butt. By the way, I also get the DH bumps on my butt - weird, but usually right along the place where the two cheecks meet along the crack!
I ate Nutella this morning on gluten free bread and had an immediate reaction - diarrhea, pain, lethergy, you know the drill. Bummer. I really like it. I may have an issue with soy. I began having problem with Jif peanut butter too which I never had before....??? Just when you think that you have found something to make that nasty bread taste ok...... I have found Skippy Natural peanut butter which doesn't seem to bother me...... for now!
I don't get it. If you have Celiac Disease, I assume you are gluten-free. If you are truly gluten-free, I don't see why you would have a rash - if it is in fact DH. The treatment for DH is gluten-free diet.......
I had only the DH symptoms and read enough to know that if I had DH, I was Celiac. I contacted Dr. Joseph Murray at Mayo to see if he would see me and he did - his secretary was the one who set up my appt and biopsy with the dermatoligist (Dr. Dragge).
You indicate that they have set you up with a gastro appt in October. If you are gluten free now, any test results will not test positive for Celiac (not sure about DH). Surprised your dermatologist didn't do a punch biopsy of your rash - this must be done when you have the rash - they test skin right next to the rash (ouch by the way!!).
Giving up pasta and beer were extremely difficult for me, but after reading about all incredibly increased risk of many types of CANCER, I gave it up without a thought. Do some research - print it out and let your daughter and family read it -- what's worse - giving up pizza or having cancer???
fyi - I have DH and was diagnosed by Dr. Joseph Murray at the Mayo Clinic - a very well known expert in the field of Celiac research. He had a Mayo dermatologist take a punch biopsy of my rash and said that if it came back positive for DH, then it was a certainty that I had Celiac Disease and the endoscope would not be required for diagnosis of Celiac Disease, but that it should be done to get a reading of how badly damaged the villa were. Note: I had no gut symptoms when I got the DH rashes and only after going gluten free for many months did I begin to have gut symptoms (bloating, gas, diarrhea) when glutened.
Isn't Dr. Murray wonderful?! About 2 yrs ago I started having rash on elbows, knees and ankles.... painful, itchy - gave me scars cuz I scratched so much. I went to my MD and he sent me to a dertmatologist. The derm looked like Doogie Howser (12 yrs old). He had no clue. I went home and just itched off and on. I had no gut problems whatsoever - other than I usually had D after pasta, but I assumed that was because I always ate it with TONS of garlic . I ran across an article in a Marie Claire magazine that discussed Celiac Disease symptoms but had a little box insert describing Dermatitis Herpetiformis (DH). I couldn't believe it - this was me. I went on-line and did lots of reading on DH and Celiac. One of the articles I read was written by Dr. Murray and included his email. I emailed him to ask if he knew of a specialist in the Twin Cities who could dignosis me - he didn't but said that he could see me - and gave me his assistant's number to call to make an appt. I was in very shortly and did blood tests, endoscope and of course skin "punch" (youch!!) biopsies of my skin near the rash. Dr. Murray was incredibly thorough and thoughtful. He is very familiar with the side effects and/or other diseases related to Celiac. He is actually a very well known Celiac expert around the World. I was so pleased to have the opportunity to meet with him - and he was so unbelievably down to earth!! I also am afflicted with Raynaud's which we discussed. He had me meet with a dietician too (pretty good, but could have been better, I agree with other poster) -- but still when I hear about people being diagnosed and having doc just say - oh, you have Celiac and sending them on their way, that's frightening. Mayo does take the time to ensure that you are well informed. I have had an annual followup with Dr. Murray. We have discussed my sister and her symptoms - he offered to look at her results, however, recognizes that the lab she went to most likely did it wrong. He has offered to test her as well - which I wish she would do..... Anyway, I just wanted to chime in about Dr. Murray at Mayo. He is top-notch!