Went To The Gastroenterologist And Now Im Confused And Embarrassed

[teankerbell]

I agree with Nini DH = Celiac

[gf4life]

Your blood test could very easily be negative. This is what I have learned about DH. You can only get it if you have Celiac Disease, but you will most likely be negative on both the blood test and biopsy because the gluten is attacking the skin more than the intestines. Many (but certainly not all) people with DH have very little damage in their intestines. They still do have some damage, but it will not always be enough to show positive levels of anti-bodies in the blood or be easily found in the intestinal biopsy. This is why they biopsy the skin. If you have a positive skin biopsy that says it is DH, then you have Celiac Disease.

Here is where the problem lies. For years docotrs did not put DH patients on the gluten free diet. Instead they put them on medication (most commonly Dapsone). This appearently would make the rash less severe, but it would never go away completely because the patient was still eating gluten. The ONLY way to make you DH go away is to go on the gluten-free diet. Also if you have other symptoms cause by Celiac (obesity is included here as a symptom also!), then those should start to get better too.

I am also an overweight Celiac. One GI doc told me that I "couldn't possibly have Celiac Disease because I was overweight". He also told me that he was going to test me for everything BUT Celiac, and would only test me for that if nothing else was positive. I got sick of him after a year of doing a ton of tests...My next GI doc said she agreed with the other doctor to a degree. She told me that she would only do an intestinal biopsy if I came back anemic though. Talk about frustrated, I left her office in tears more times than I can count. I was at the point of getting a referral to a dermatologist when I realised that I couldn't wait a few more months on gluten just to have my skin biopsied. I had tests done with Enterolab, went gluten free and never looked back. Now my kids are also gluten free and we are all healthier for it.

If your rash gets better when you don't eat gluten. Then don't eat gluten. It will save you the complications of untreated Celiac in the future, because you do have Celiac Disease. You don't have to have a GI confirm what the Dermotologist already diagnosed you with.

[Claire]

On the subject of DH. It does not respond to gluten-free as quickly as other symptoms do. Don't get discouraged or think you don't have celiac if the rash continues or returns intermittently. Intestinal healing can take upwards to two years or more (though bloating, big D and other symptoms may diminish early on) DH takes that long - maybe longer. Hang in there. Claire

[Bonnie]

Sorry you had to be seen by such an ignorant doctor.

I have seen one GI only and he told me I can't have celiac disease because I'm not wasting away. What a load of bull.

You should read "Dangerous Grains". I have just finished reading it last night and obesity is mentioned throughout. In fact, if I remember correctly, there are more obese Celiacs than underweight!

You already have your diagnosis with DH. Stick to the gluten-free diet!

Good luck.

Yvonne

[ianm]

I was another of the super-heavyweight celiacs. I went to dozens of doctors and they didn't know a damn thing about nutrition related issues.

[slpinsd]

Sorry about your experience. I recently had a horrible experience w/ an endocrinologist. i just sent him a 4 page letter expressing my disappointment, including facts, research, and articles to further his awareness of Celiac Disease. I think it's a good idea to write him something that includes the above articles on the commonality of Celiac in overweight people just as much as underweight or normal weight. Fire him in the letter, and he'll be kicking himself. In the future, he would get his facts straight, and hopefully act differently the next time.