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
Received a positive skin biopsy result last Friday. No more guessing and that is awesome. I never wanted to get a positive medical test in my life before now but I'm quite pleased and that's i little creepy. I'm off to gluten free land for the rest of my life.
I am very fortunate because I live about 20 min from the University of MD Center of Celiac Research and my Dr is Dr Alessio Fasano who is one of the world wide experts on Celiac and DH, so I gotta trust he's right. I think the logic behind the challenge is this; while I'm gluten free I take 100mg Dapsone/day to control my skin outbreaks until my diet takes over. As you probably know, it's trial and error to find the correct dosage balance between comfort and danger (for me my blood work dropped at 150mg/day). Once the dosage is found then adding gluten back into the equation creates new outbreak and thus confirming DH.
I could not do a gluten challenge off Dapsone. I went off Dapsone while gluten-free after about 6 months and it almost killed me. When I have a bad breakout my skin gets so itchy and painful I sleep maybe an hour or two a night. It sucks BAD. My profile picture is from that outbreak and normally I'm really really GQ good looking (ok, not really, but I don't normally look that bad).
I think it's very unlikely that I have something other than DH but the DR wanted to try this, so... BTW, I'm two weeks into the challange and am breaking out a little but progressivly worse. Scheduled a skin biopsy for next week. I have not tried the iodine test but I'll look into it. Thanks
I'm now starting to break out after a couple weeks into my gluten challange. Scheduled a biopsy for next week, so we'll see what happens and go from there. I do think it's unlikely that this is something other than DH but my Dr wanted to try it. Thanks
Thanks. I was 9 months gluten-free when taken off Dapsone and there was zero improvement in my skin, none. But, like you, I have seen improvement in some other areas like painful joints, GERD, etc. I do actually feel better other then my skin. I have not tried excluding any other foods. My Dr came up with DH in just a few months and is still convinced, even through all the negative tests (read my reply above). He goes to a giant MD book whenever he needs DH info. He also says he sees DH 2-3 times a year but I have my doubts. Still waiting.
Thanks. I've been checking out the fourum from some months now and it's been helpful.
I have had both biopsies and blood tests but because I was getting frustrated with how long everything was taking, I went gluten-free on my own and all my tests happened after that and all were negative. It was probably two-four(ish) weeks gluten-free when I had my blood (IGA) test so I understand the probable inaccuracy. I had two skin biopsies, the first one from my elbow next to active lesions was negative but I don't think the Dr did the immunofluorescent dye. When it came back negative he did a second from my rear end , this time with the immunofluorescent dye and also negative. I'm a knuckle head for taking matters into my own hands and going gluten-free before I was told to but hind sight, blah, blah...
So I am three days into my gluten challange with not too much happening yet. My skin has always waxed and wained a little while on Dapsone and I was on a little wax cycle before I started the challange but besides that only the slightest upswing in lesions since reintroducing gluten Saturday (while still on Dapsone). So I wait..and watch...some more...do I have it...do I have something else...?
So my Doc is now questioning if I have DH because I have been gluten free since October but when I went off Dapsone my skin went crazy. All of my tests have been negative but I went gluten-free before I started them. My symptoms for DH are 100% on the money. I am starting a gluten challange soon where I will reintroduce gluten while still on Dapsone. If my skin breaks out they say it pretty much confirms DH and then I will have an endoscopy. If no breakout then it's most likely something else. Has anyone experienced anything similar to this and if so what did it turn out to be if not DH?
My DH flaired up for the first time in 6/09. After several Dr trips DH was mentioned to me for the first time 09/09. Although my blood tests and biopsies are all neg, my derma Dr and Dr Fasano at the UMD Ctr for Celiac Research are 98% on the diagnosis. I have lived strictly gluten-free since 11/09 and have taken Dapsone now for about 5-6 months. The Dapsone did a good job alleveing me of 95% of my outbreak and would only get a little on my scalp and face. 2 weeks ago my Dr took me off dapsone because my blood numbers started dropping and after 1 week my skin was so bad I can't sleep and it's effecting my life in bad ways.
I am so discouraged that after 6 mo gluten-free my skin EXPLODES when taken off meds. Do I just need to be more patient? Am I being unrealistic? I read stories of people going gluten-free and seeing results in 2 weeks and also folks who take 1-3 yrs. I'd love o hear some other peoples experiances.
In May I was returning from a business trip in Bermuda (I know, pretty sweet) and noticed on the plane that my elbows had broken out with lots of what seemed like pimples. I work in lots of medical and research labs and figured that I just put my elbows in something nasty and was having a reaction. Well it didn't go away so I went to my general Dr and then to the derma Dr without any results. All the while the rash was popping up elsewhere; knees, belt buckle area, scalp, rear end, etc. Eventually my Dermatologist mentioned that it might be DH and did some sort of biopsy which came back negative. Then he said that we needed to do an immunofluorescence biopsy and blood tests but because he was showing zero sense of urgency I decided to skip the tests and just go gluten free and see what happens. I have been gluten free now for two weeks and while I think I have noticed improvement it is very little and I'm still getting new blisters. I'm a little frustrated because while I don't have a Dr diagnosis of DH my symptoms point strongly in that direction and I was hoping going gluten free cold turkey would prove this out. I'm interested to hear what other have experianced regarding detox time and what to expect.