<<Disclaimer: Verify this information before applying it to your situation.>> Paul Sinclair [log in to unmask] Richmond, Virginia Dear Paul, I am sharing these thoughts with the list, because I bring up a few of my own concerns that may lead to some of our enjoyable philosophical discussions on health management and coping, as well as celiac disease (CD) in general. Comparing Symptoms Is OK I assume you received a diagnosis from a dermatologist. Unfortunately, as specialists who can identify DH (but tend to send you on your way), they are not the best to educate you on your gut and how it may be causing problems throughout your body. Any other ailments you may experience are probably not too bizarre to be attributed to your body's auto-immune response to gliadin (the protein in gluten grains). It is common enough on this list to compare symptoms as earthy as diarrhea and constipation, as seemingly unrelated as bronchitis, and as minuscule as dry skin. Find Some Gut Resource Persons In my layperson's opinion, you should contact a local celiac support group and ask for names of gastroenterologists who know CD and will sit down and take a health history. You might also call the GI Department in Charlottesville (is that UVA?). The last resort for an adult is to quiz pediatric gastroenterologists for names of collegues who work with adult celiacs. (I have heard it said that if a doctor tells you that DH isn't celiac disease, find someone else.) It may be a great relief to you to find out that this, that and the other health problem may improve with your new diet. Also, it is good to get the gluten antibody tests done before you are off gluten for very long. (They are also useful later for comparison.) Then, you and the doctor may decide that, in order to better adhere to the diet, you need a biopsy to show both of you how your upper bowel is responding to gluten. Again, the <before picture> becomes useful in later years. My Two Cents On The Biopsy Procedure (Just to add to the biopsy discussion: I asked for no general anesthesia, but used <abdominal> breathing to relax. The doctor noticed that it was a quicker and easier procedure since I was alert and could help out.) If More Doctors Only Knew . . . Morbid as it seems, it is reassuring to find out that someone else on the list or in your local support group gets a cracked lip or a sinus infection (or whatever) when they ingest gluten. Most of the people in support groups get GI symptoms because that is how celiac disease is described in the Physician's Desk Reference. (In my daydreams there are referrals from dentists!) If you don't have GI symptoms, count yourself lucky that your skin set off the alarm. For me, my hereditary threat of developing cancer feels smaller because I have information that my deceased aunt, uncle and grandparents did not have. And that gives me at least a hand hold on my future health. Waxing Theoretical It almost seems like the later in life we are diagnosed, the more health concerns we have picked up. It seems that had all of us been diagnosed soon after birth through a screening process, and put on a gluten-free diet right away, many of our past and current health concerns (bone, tooth and gum health, mood swings, blood sugar problems, lactose intolerance, diabetes, rheumatoid arthritis, etc.) mightn't have popped up. Water under the bridge, I know, but the threat of further health problems is a good motivator for me to be strict with myself and to educate others, especially members of my large and illness-plagued family. The Big Who Am I? On a personal note, it has been an ongoing process to separate my concept of who I am with how my body is misbehaving. I wasted away for a few years, so it was too easy to start thinking of myself as a sick person. Especially since the mirror and people around me reinforced the idea. For therapeutic reasons, I practice talking about parts of my body as if they were separate from me, just to create a boundary when symptoms get between me and what I want to be. (energetic, cheerful, able to leap small buildings--Oops, I slipped a <what I want to do> in there, those are different) I Eat, Therefore I Am . . . Speaking of verbs, a wise person once warned me to be careful with using forms of the verb <to be>. He said for me to say < I feel sick > rather than < I'm sick >. As a result, I prefer to tell strangers I've inherited a GI disease, rather than <I am a celiac>. Happy Trails So Paul, it sounds like you've inherited a GI disease that shows up dramatically on your skin. Please take care that it doesn't show up elsewhere in years to come. To you and all the new participants: Welcome to the list, be sure to learn how to access/receive the archives, and happy searching! Wishing you many healthy and happy days ahead, Mary C. (not a dispenser of medical advice, no experience with DH symptoms) Mary Courtney [log in to unmask] Los Angeles, California