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
It's frustrating! I feel like any other medical issue doctors go with the "if it walk and talks like a duck, it must be a duck!" but not this. You HAVE to have the antibodies to have a clear diagnosis. My dermatologist nearly appologized for not being able to give me the official diagnosis due to a negative biopsy. Some day the medical field will wise up, I hope!
Thanks to you both! It's always good to know your not alone!
Really good scratcher - It's been an adjustment for sure. I have two kids, one of which is also allergic to eggs, milk and soy so adding all things gluten to that list has been a challenge to say the least. I have found I need to be super strict with the diet, any little trace amount will cause a setback. My skin started to heal pretty quickly but It probably took a good 6 months to really see a difference in things like my energy level and just over all well being. For the first time in years I feel good. LIke this is how normal people go through life, not feeling like crap all the time. I'm not happy about the diet that's for sure, still get down about it from time to time but I'm finding it a necessity so what can you do but just move on the best you can.
I deal with some pretty picky eaters! When my son was about 3, a play date offered him some cotton candy, he turned it down! Candy! He's been refusing foods since he was old enough for solids.
I highly recommend the books by Ellen Satter. You can find them on Amazon. "How to get your kids to eat but not too much," is I believe one of the titles. It's a slight variation of "this is what's for dinner, eat or go hungry". Make one meal and put it all on the table at one time. Make sure there is something on the table they will eat, even if it's just a slice of bread (gluten-free possibly?). You don't get up and get them anything else, there should be enough choices on the table for them. And that's pretty much her main point, it's got to be their choice. You can't force them to try a certain food, that will just make it worse. It will take time but if they know it's their choice they are more apt to try (hopefully).
I also discovered my son prefers his veggies crunchy and not cooked. Fine, saves me time and less pans to clean. We do a lot of carrot sticks, sliced red and yellow peppers, cucumbers, green beans, all raw. Not to say I don't serve cooked veggies as well but it's one or the other, I'm not serving both at the same time to accommodate him.
We also deal with multiple food allergies. I have another child allergic to eggs, milk and soy. We don't stray for the core set of meals very often either. It does get a little boring. Shopping is mostly the outside of the grocery store, fruit, veggies, meat. Very little processed foods. Every now and then if I want something fancy I know the kids won't eat, I'll simply put out some safe hot dogs at the same time and ask them if they want any of the other dish. They usually will try a little.
My son is now seven and is starting to get better and try new foods a little bit more and not put up such a fuss over dinner, however my 5 year old is starting to put up blockers on some foods that she previously would eat.
My dermatologist recommended Benadryl for the itch. Don't think it will have much effect on the rash per say but it should help reduce the itch at least. He gave me a prescription for a Benadryl type med but personally I prefer Zrytec, doesn't make you as sleepy and you can take it daily with out too much trouble.
You probably already know this but he also said a sign of DH is that it doesn't respond well to any steroid creams, unfortunately.
So, I've been reading here for a while now trying to figure out what's going on. Thanks to many of you as you have helped immensely. Simply feeling like I'm not alone has been a huge help!
Like most of you I've had GI problems of and on for years. Been told I have IBS, reflux, the usual, but it never seemed right. Last summer I started to itch, insane itchy small bumps that lasted forever. They were head to toe, my knees, elbows, shoulders, tail bone, and hairline you name it. Saw my allergist and he threw out DH. Did the celiac blood test, negative. Saw a dermatologist who thought I was crazy, "that's so rare!" but agreed to biopsy. Of course after the fact, I read here how he did it wrong, it was negative. I went gluten free and the rash went away, after a few week I tried to re-introduce, got really itchy! Surprise, surprise.
I asked my primary for a recommendation on a better dermatologist and she recommended just calling the local university/medical hospital, they have a special derm department. It was a bit of a drive but the Dr. was great. He listened, said, "yes, it's rare but it does happen." The fact that steroid creams have no effect was a sign it was DH, and of course the fact that I can control the rash with the proper diet was also a clear sign it was DH. Basically, everything I described he said sounded like DH.
I did go back on gluten for just a little bit before the appointment and there was enough rash on my upper back/hairline for the punch biopsy, next to the rash I might add, but it was still negative. He nearly apologized for not being able to "officially" diagnose me with DH but said to continue the gluten free diet.
Interesting is that one other recommendation he had for the itch is benadryl. He also gave me a prescription for a stronger version of benadryl. Said to take it every night regardless and it will help. It makes you really sleepy though so I only take it when needed. It doesn't heal the DH or anything, the antihistamine simply helps take away the itch. He also mentioned the dasapone but without the official diagnosis I think he's hesitant to prescribe it which is fine, I don't think I need it anyway. He did say come back if I can't control the rash with the diet.
Though it seems like most doctors are clueless, there are a few out there that DO know about DH. It feel good to be validated by a medical professional instead of second guessing everything.
I had a doctor tell me that eggs, milk and soy are very similar to gluten and I should eliminate those for a year to let your body heal. Chances are, you can then reintroduce. Not sure how common of a recommendation that is though? She has been one of the few docs I've talked to that seems pretty knowledgeable about this stuff and gave me lots of great info so far.
I'm feeling pretty good as long as I am super strict with the gluten so I continue eating both eggs and dairy but if you are still having GI issues you might want to look into it some more.
By the way, the pics look very much like my DH as well.
I've had a patch on my leg for nearly 6 months now. I think some spots take time, a lot of time. I also talked to a new dermatologist today and he recommended the drug Dapsone, I still need to look into it more but he seemed to think it would help clear things up?
My 5 year old daughter is allergic to egg, dairy and soy so, I've been struggled with what to feed my family for years. Now with my recent Celiac I was at a complete loss for a while there.
Lately I've been researching recipes online. A bunch of good ones seems to be on http://glutenfreegoddess.blogspot.ca/p/site-index.html and skinnyms.com. Also I know get allergy living magazine, which is great.
Here's one to change up rice, I've done a similar recipe to this with Almond milk and it was just fine: http://skinnyms.com/slow-cooker-brown-rice-pudding/.
Wanted to say that my spots look EXACTLY like yours! Thank you! I've so far tested negative to the celiac blood panel test and a dermatologist did biopsy a blistery spot which came back negative but from what I've been reading here he did it wrong. He only took a slice off a spot, no punch and no unaffected skin.
Please do keep us posted as to what your doctors says. I'm off to find a new dermatologist.