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
DH was actually a lucky diagnosis for me. A positive DH biopsy means you have Celiac disease and you need to cut gluten out of your diet completely. The rash will go away. Mine went away very quickly, but I still have flare ups after three years. I am thankful to have a definite diagnosis from my skin biopsy because so many people have intestinal difficulties for years before getting a diagnosis of Celiac disease. Your husband's symptoms sound classic. Good for the doctor for considering it! If the biopsy is positive, return often to this site for help getting used to the dietary and life-style changes. There is medication, but many doctors don't recommend it long-term. The diet works. Good Luck and don't be scared!
I spent a week in the Tokyo area and had a lot of trouble eating out. I did have one meal at an OUTBACK and had lots of help at the Tokyo Disney resorts. Tokyo Disney Sea and Disneyland employees were extremely helpful and would provide a translator so I could speak to the chefs. I had great meals at Disney! However, outside of Disney was another story. In general the restaurant owners would shake their heads when I handed them my card with the Japanese translation for my dietary needs. They would very politely and respectfully refuse to alter their menus in any way. I got the idea that they had too much pride to serve food that they didn't consider to be flavorful. They would not even bring me plain rice because "it wouldn't be good". Fortunately, I was staying at my daughter's apartment (she works at Disneyland) and brought a LOT of my own food along. I loved Japan. I just couldn't eat there!
I have DH and I get the blisters around my waistband. My dermatologist told me it probably wasn't dh but I know that it is. I also have a nickel allergy, but considering I don't have nickel anywhere near my waistband, I truly doubt that that is what it is. Do use a mild laundry detergent (scent free/ dye free etc.) to start with. If you are diagnosed with Celiac, definitely go on the gluten free diet. Keep in mind, some tests for Celiac (especially blood tests) are NOT very reliable. Biopsies ARE reliable. If you actually have little blisters on your skin, see if you can get a biopsy of the skin NEAR the blister by a dermatologist who knows what he/she is doing. The skin test for DH is very reliable if done correctly. My biopsy was positive for dh, although my blood work was inconclusive. If your biopsy is positive for DH then you have Celiac Disease...no more tests needed.
We go to LV about 2-3 times a year. We stay at Ballys or Paris usually. I have eaten lots of places and usually I get lots of help from the staff. I take my own muffins (from Kinninnick) for breakfast, and put cheese, rice crackers, fruit, etc. in a cooler in our room. We eat out once a day. There is an OUTBACK on the strip. I've done okay at the Paris buffet because the chefs are very knowledgable. But it's too expensive! The cheesecake factory at cesars always comes up with something I can eat (pork chops and mashed potatoes). It's not too hard!
My dh rash came and went for years without any kind of pattern. I was also diagnosed with many of the same things as your daughter and was given all sorts of creams and ointments. The rash (on my elbows mostly) would go away for a while and then show up again. It took people asking me what was wrong with my elbows before I went to a dermatologist instead of a family doctor and got the biopsies and the correct diagnosis.
My feeling is that dh can actually get worse for a while as the body is ridding itself of the gluten. Also, as you go gluten free, smaller and smaller amounts of gluten will cause a reaction. Watch for anti-inflammotory drugs- they can cause flare ups for some reason even if they are gluten-free. Also iodine can be a culprit. Now as for relief...I KNOW I will get some negative responses from this but I use Aveeno oatmeal baths when I'm really bad. Yes, I know oats are iffy. I never eat them, but soaking in the bath makes me feel so much better when I have a flare up. It calms the itch and keeps me from going crazy and I've never had to use Dapsone. So if you're really suffering, you might consider it.
Well the good news is that you're committed to be gluten free with or without the official diagnosis, right? You may know in your heart that you have dh, but the doctor disagrees. Since the treatment for dh is to be on a gluten free diet, I guess it doesn't reallly matter if it's official or not. I have the opposite dilemma in that I have the dh diagnosis, but the GI dr I saw said I would need the intestinal biopsy to "officially" have celiac disease. Now you and I both know that's not true since I have the dh diagnosis. But enough about ME....So you can 1.continue to be gluten free which I know you have to do anyway and 2. Find a new doctor!
Because my youngest is allergic to peanuts, we have always had to be careful in the kitchen. When I was diagnosed with celiac disease, the family just went along with the new routine. I don't cook or bake with gluten except the occasional holiday cake (my mixes are too expensive to share). I make pasta sauce and gluten-free pasta. If someone wants regular pasta, they make it themselves and clean up their own mess. No one would DARE eat my cookies, but I share the gluten-free baked goods I make and everyone likes them. We use squeeze bottles for jam and condiments. I won't slice bread for anyone and I won't clean up crumby messes. I doesn't hurt my family to believe that I will die if I touch a crumb and no one needs to tell them the truth.
I had a chunk taken out of each elbow on a Friday afternoon. A few hours later I went on stage in a production of "Fiddler on the Roof." Opening number: Tradition! and I throw my arms up in the air. RIP! go the stitches. Alls well that ends well: two years later my scars are barely noticable!
Sawgrass: I was lucky in that my DH cleared up almost immediately. Unfortunately I get little random outbreaks every now and then, but rarely is it really terrible. I have been gluten-free for over two years now.
Lindalee: I have had dh on my lower stomach, particularly on the sides around where the elastic is on bikini underwear. It's miserable to get it there because it's irritated constantly by my clothes. I use steroid ointments to calm it down.
Before my official diagnosis of dh, my dermatologist gave me that same cream, although in ointment form. It helps with the flare ups. Luckily it was the dermatologist who did the biopsies without even telling me what he suspected it was. When the biopsies came back positive for dh, he explained about the gluten issues and set me up with a GI dr (useless) and a dietician (also fairly useless as I found this site before I could get in to see her.)
My racing heart and PVC's were linked to my underactive thyroid. I got the thyroid diagnosis and my Celiac diagnosis on the same day by different doctors! I'm on a beta blocker and my heart is calm now, except when I see Hugh Jackman.