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 had four biopsies done by a doctor that didn't really know where to do the biopsies. I ended up being diagnosed with scabies, atopic dermatitis, and medication allergies. I finally started researching myself and figured out it was DH. I went to a new dermatologist and told him that I thought it was DH, so he started me on a trial of dapsone. In the two weeks I have been on the dapsone the itch and rash are almost completely gone......the itch was almost non-existent in two days or so. I actually went back today and he told me he isn't even going to do a biopsy. He said he feels like the dramatic response to dapsone was diagnostic itself and I had DH. You might look at the thread I started called "Does this look like DH to you?" Squirmingitch posted some links to websites that I printed and took with me to the doctor's office. The links tell exactly where the biopsy should be done as well as gives other information about DH which I found very interesting and informative.
Hope that helps!
I was just diagnosed with DH and mine looked almost identical to yours. I had what looked like hives all over the place. I didn't have any blisters whatsoever. I went to 2 dermatologists and my GP several times before I finally got the diagnosis, but I started on dapsone two weeks ago and my rash is almost completely gone. The dapsone has given me relief where nothing else did and now I am almost completely gluten free for a week. Hope you have better luck getting diagnosed than I did ! Good luck! Hope you feel better soon!
I can't speak for the gluten part of the flu vaccine because I am just starting to wade through all of this (was just diagnosed as having DH last week ); however, if you are allergic to eggs (you said you were when you were a baby) then you should NOT have the flu shot. I am in nursing school and that is one of the big things they tell us, but it doesn't seem to pertain to other vaccinations. I will do some research if you would like, but I wouldn't get the flu vaccine if you are allergic to eggs. You should probably verify that with your physician to see if he thinks you can, but if it were me I wouldn't.
At last check one of my office visits at the beginning of the year my Vitamin D level was 3, with normal being 30 and 12 being severely deficient....YIKES! I haven't had any other huge deficiencies that I know of and was just diagnosed with dermatitis herpetiformis (the skin manifestation of celiac) a couple of days ago.
The plan was to do a celiac panel in a couple of weeks. I am not sure why he didn't do a biopsy, but my suspicion is that he didn't have time. I was schedule to see the PA whom emphatically claimed it was hives and I just needed to go back on the steroids and suck it up. I was pretty upset about it and was ready to walk out. I told her I wanted the doctor to look at it and she grabbed him out of another room to come have a look. He took one look at biopsy results from other doctor and my skin and said it was DH. At this point I feel good about the diagnosis as that is what I believed it was all along, but thought if I could have the blood work confirmation as well it would be nice. I guess if I go in a couple of weeks for blood work and it comes back negative I will just go gluten free anyway. I definitely believe that it is DH. I have been on dapsone for 2 days now and am seeing slight improvements in the rash and my overall itchiness has really gone down. He said I should see marked improvement in 4 days and if not call him, so we will see.
This illness is EXTREMELY frustrating! I completely understand why people self diagnose and do what they have to to make themselves feel better! At one point during my conversation with the PA I was in tears and had to apologize later for being such a (insert nasty word).
Thanks for the advice and all of the information! I took all the information I printed from this website to my doctor's appointment. The doctor said my case was "different" looking so had several PA's come in and look at it. Maybe that will help some other poor sucker who is itching and scratching themselves to death!
That is what the doctor said. I am going to try and give it at least a month, but we will see how the dapsone therapy goes. I am anxious to start it this morning.....I understand people with DH see a dramatic improvement in symptoms in just a couple of days.
Well I can't believe it but the doctor took one look at my elbows, hips, legs, and other various parts and said I believe you have dermatitis herpetiformis. You could have knocked me over with a feather. I had told the PA that is what I thought it was and she didn't think so, so she had the doctor look too! Glad he did. I am starting on dapsone in the morning with the hopes of going gluten free once I am able to get the celiac panel drawn in a couple of weeks. Thanks to everyone here that provided me with advice, it helped greatly!
Oh my gosh Sqirmingitch, it is like it was me talking! I have been saying for weeks whenever I exercise my rash flares up, whenever I sweat my rash flares up.....even taking a hot bath my rash flares up! Crazy! This thread is a great idea! Thanks!
Prickly, I am going to go tomorrow and get copies of all of my records from that office tomorrow. I have made an appointment with a new dermatologist on Monday and am going armed with all of the information you gave me.....thanks a million! I also talked with my GP who said they are going to run the antibodies, but of course want to wean me off of the steroids first. I am hoping the dermatologist will give me a trial of dapsone and see if it works. I am just starting the wean and am already itching like crazy towards the end of the day, so I KNOW this will not last and once I am off prednisone the rash will be back full force!
Thanks again for all of your helpful information!
Oh my goodness....I just posted a thread "Does this look like DH to you?" because I had the EXACT same thing happen to me. I have had two biopsies from the same dang doctor and both times it came back arthropod (or scabies...YUCK) or drug reaction. Both times WRONG! I do NOT nor have I ever had scabies and no one in my house has had them either!!! My dermatologist took biopsies only from the most active parts of the lesions, so of course the biopsies were inaccurate. Not to mention he has put me on two rounds of steroids, so now I have to wait to have accurate tests done because my immune system is suppressed but I am STILL FREAKING ITCHING!!!! It makes me want to scream! In a month absolutely miserable and it feels like the doctors are not listening.
Since I posted on this forum and have gathered some information, I have made an appointment with a second dermatologist and am going to that appointment armed with piles of papers showing exactly where to biopsy, what my symptoms are, what symptoms are commonly seen in DH, my biopsy results from the other doctor, etcetera. Hopefully this will help me start out on the right foot and get this figured out sooner rather than later!! Good luck! I hope you find relief!
Well biopsy results came back in......of course I got the brush off from the doctor. He claims that it is a drug reaction (I have been on the exact same meds for years with zero reaction and he has said all along that this was NOT a drug reaction) and is sending me back to my GP for further intervention! I called yesterday and spoke to the NP I see and she had never even heard of DH. She was going to do some research and get back to me. In the meantime, I have printed all of the information I can get my hands on (thanks to everyone here) and am going to present it to her later today. I am hopeful that MAYBE I can find some resolution. I am contemplating requesting a trial of dapsone to see if it improves my symptoms and then try to get legit biopsies outside the rash area (yes Prickly you are right all four biopsies were done of the MOST active areas of rash) and have antibodies drawn. Thanks again for all of the information you provided me so that I can make more informed decisions!
I am dealing with the same exact problem currently (although I have only had it for 3 months and am going crazy)! Hope you get some relief. I am still trying to get someone to listen to me and make a diagnosis rather than try and mask the symptoms with medications such as prednisone! I just started my second taper of prednisone and symptoms are coming back faster than ever! Good luck!
Thanks so much! If you double click on the picture I think it gets bigger....at least it did for me! Either way I appreciate the advice. I plan on continuing eating gluten until I get a diagnosis. First of all I eat a TON of bread, pasta, etcetera so this will be a HUGE undertaking for me.
Thanks so much all for the information and I will definitely keep you posted!