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 just saw a dermatologist at Women's College Hospital in Toronto three weeks ago and was assured that the antibodies would still be in my skin after three years gluten free. I had the biopsy done for DH and will get the results on Feb 27. She was absolutely certain that they stay in your skin for a very long time. I also read a research article recently that said the average clearing time was close to 12 years.
I've had a rash for about 3.5 years now and have been gluten free for 2.5, low iodine for a little over one year. My skin seems very sensitive to the amount of iodine I eat, and I have occasionally gotten to a really great point of healing and clearing before managing to muck it all up by going on holiday or something. Of course, then it's like being back at almost square one again for the longest time.
As far as I can tell you, it does seem to have an ebb and flow that sometimes seems to not correspond to anything you are doing/eating. It really is the most frustrating thing I have experienced. It's still early days for you, but it sounds like you are really responding well to the changes you've made. Don't lose hope. Keep up what you are doing because it should work, even if there is no clear timeline (it's different for each one of us). For myself, I've been thinking about trying hypnosis to help stop scratching and picking at my skin. I can see that I'll be covered in scars at the end of this. If I was ever vain, this has really helped me become a more humble human being.
Squirmingitch is totally on the money here. If I were you, I'd give up the gluten this minute and never look back. Forget about a diagnosis and just run from the gluten. RUN, my friend! My sister just told me that she's starting to get a rash on her behind and with our family history of celiac and DH I was kind of surprised she hadn't already quit eating gluten. I mean, she's SEEN my skin and that should be enough to scare most people off gluten.
It's taken 26 months gluten-free so far to start seeing and believing that my skin is finally healing. Lots of flares still, but iodine is a big factor in that..
The dark urine is kind of scary. I would definitely have stopped taking it at that point. I've tried twice to take Dapsone at 50mg dose and just couldn't keep at it for more that 10 days because I felt like such crap. It was slightly better the second time, but it really boiled down to not being able to tolerate exercise (which is a big part of my life).
It looks quite mild, but it certainly could be DH. I get blisters and red spots on my fingers all the time. The blisters are sometimes very small, just pore sized. Stingy, burny, itchy and blisters sounds a whole lot like DH to me.
Yes, I definitely get a pronounced reaction to sun exposure. Before I ever even had DH, I would get a rash from the sun that was nearly identical to my DH rash. I always thought it was some sort of allergy, and I'm still not sure if it even ties into DH in any way. It's just interesting. I've been tested for Lupus and I don't have it.
If I keep my diet simple and lower iodine then my skin is better. I used to have that red rash you have, but that's gone now and what's left is more like purigo nodularis, but not exactly. The bumps I have will flare and blister if I get cc'd or have too much iodine. I am still terribly itchy in general, but I do believe that I'm slowly healing as it's so much better than before. For the record, I've been gluten-free for 20 months now.
I really hope that once you are gluten-free it'll never come back. I can't see any reason to think otherwise. Good luck!
Gotta say it doesn't sound like shingles to me either. The hallmark of shingles is severe pain before the appearance of blisters, of which you have neither. Looks a lot like hives, but I couldn't say if it's from gluten or not. You are obviously reacting to something.
Looks like DH to me. My rash used to look just like this before being gluten free for some time. My guess is that between the wheat noodles and the massive salt hit from the ramen flavouring is what caused this particular outbreak.
I'm also very itchy even where there's no rash. Drives me crazy to say the least.
That looks like what I had before I gave up gluten. I never had it as wide spread as you and honestly, I'd forgotten how red it was. Like many people here, I've never had a positive result for gluten testing, but it absolutely is DH. Be prepared that you may never get an absolute answer.
It wasn't until I went gluten-free that I ever got actual blisters. I still get tons of hives. It's like they live just under the surface of my skin and wait for the slightest scratch to come blaring alive.
It's pretty normal to go through some depression about this. Seriously, it's completely crazy-making stuff! I've cried about it many times. It's taken 1.5 years of gluten-free living (strict, too), to get to a point where I see a wee bit of light at the end of the tunnel. Compared to what it was, my skin looks good, though it still itches like a mother.
I feel for you, I really do. Unless you can get into see a derm quickly, I wouldn't wait to go gluten-free.
Completely crazy-making, thinking about all this. I'm really bummed out that after 4-5 years gluten-free, you still have the rash. It's only 10 months gluten-free for me and I'm not seeing much change at all. In fact, it's spreading to new places.
I tried dapsone last spring and only lasted about a week before the side effects made me stop taking it. I had no relief from the rash in that short time. Not everyone has side-effects and it may work for you. I'd totally give it a try at this point.
My Bulk Barn has all the flours in the same section with the gluten-free ones marked as such. I once bought the gluten-free cornbread mix from the bulk bin and it did upset my belly, but to be fair, lots of gluten-free grains/breads don't agree with me. My mom was told to stay away from the bulk bins as cc was an issue. I'd give the flour away or just throw it out.