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Msmollygrl

Do Primary Doctors Test For This And How To Approach A Doctor If You Think You Have This.

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Hello - I am new to this forum and new to learning about Celiac and Dermatitis Herpetiformis. The reason i'm inquiring is that I have had a terrible constant rash over the last 7-10 years. It is extremely frustrating, and uncontrollable. I have tried everything, including about 5 different doctors, mostly allergists and dermatologists. I have had the pin prick tests, chemical panels on your back, 2 biopsy's of the rash, and referrals to University of Miami Derm that is suppose to be advanced in research on skin disorders. NO doctor has been able to figure out what the problem is, and a few have tried to play around with bogus ideas but none of them have succeeded in finding a solution or the root of the problem. NO one ever mentioned getting tested for gluten and i'm not sure if that is something included in an allergy blood panel or prick test?

So I tried two more things. First off I have two dogs (which I was told I am not allergic to animals). I had a bug inspector come check my house, my room, bed, etc. Even had a tent and fumigation put on my house JUST IN CASE! Bought allergy mattress cover, pillows, dogs no longer on bed, etc. and still this did not resolve the issue.

The last attempt which brought me here was I decided to go on a food detox diet that I found in a book from barnes and nobles. This however, had nothing to do with eliminating gluten. It did primarily focus on vegetables, fish, nuts, rice based pasta, soy products, water and apple juice and basically I elminiated red meets, junk food, cookies, crackers, soda, alcohol, pasta (unless rice based), but I still used some salad dressings, ate original oatmeal frequently, spice mixes, and who knows if anything else I ate had gluten since it wasn't something I was aware or pin pointing. This detox lasted 6 weeks and I had an occasional breakout and itchy sensation but not nearly as much as I normally do. But since I still had a little I assumed it was not my diet. Then when I went back to eating normal food I immediately noticed a huge difference in how I felt and the breakouts. I ate a Thomas English Muffin Multi Grain and within about 45 min had a cluster of the red dots (with what looks like little pin pricks in each one). I also have felt way more bloated and even woke up nautious and throwing up one night (about a week into being back to normal eating). I met someone that said that the rash looked like I was allergic to glutten. I immediately went and did research, which has led me here. I have looked at a list of symptoms and some of the immediate one's that strongly stood out are the DH rash (although I get them primarily on my arms, back, chest/neck area, and face/hairline. It's uncontrollable itching, to the point I make myself bleed. I have little dark circle scars on my arms, in the locations where I had the red marks. I am taking oral contraceptives (for over 10 years now) which i'm told increases the issue, and I also frequently (AND I MEAN ALOT) get canker mouth sours inside my mouth. When I did the detox I got NONE, but now that i'm back to normal I have already had a couple. I have been feeling really bloated lately but wasn't sure if this is related. Also, in the past I have been told I was anemic, although I don't think that's an issue lately. Lastly to mention is I am 33, which i'm not sure if this is important but I read it starts in people between 20-30 which would be right on the dot for me when this all began...which was in my 20's.

After explaining my whole situation, I wanted to ask the questions I was curious about. Does this sound like a gluten issue to you? What type of doctor is the BEST or applicable doctor to see (primary, gastro doc, health place that does (Company Name Removed - They Spammed This Forum and are Banned) testing, ???). Since the allergist and dermatolist have done NOTHING for me I want to make sure I see the right type of doctor. Also, do I just walk in and say I think I may have celiac or DH or a gluten problem? I'm not sure if a primary doc would look at me like i'm crazy. Any feedback you have would be GREATLYYYYY APPRECIATED!!!! This has been a huge problem for me over the last 10 years and I really am at my breaking point with it. If I have an idea as to the cause then it's up to me to take the measures to fix it. But no one seems to be able to help me find out what it is!!! :(

Thank you!

-Andrea

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Did the derms biopsy the rash itself? If they did they were not looking for DH. DH is checked by using the skin next to the rash and they need to be looking for it.

If you are still on a full gluten diet you could go to your GP and tell them you want a complete celiac panel done. Be aware though that false negatives are common.

You could just go gluten free, strictly including toiletries and see if that takes care of the problem. With DH you also should avoid iodine until the lesions have been clear for a while. If you do that you will show false negatives for sure on testing so if you really need a diagnosis get tested before going gluten free.

You don't really need a doctors permission to be gluten free but you should have blood tests for anemia and a bone scan done as celiac can cause osteoporosis and anemias.

It is good to keep in mind that some folks have had trouble getting health insurance with a celiac diagnosis as a preexisting condition but if you have insurance now that might not be an issue.

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