I had my first meeting with a GI doctor today and was sadly disappointed. I even got his name from The Gluten-Free Bible so I thought he would be really knowledgeable. I have only a few GI symptoms but I decided to go to him because my dermatologist said that he knows little about celiac. This GI doctor today told me that he knows little about DH. He then proceeds to prove how little he knows about DH by saying that “Just because you have DH doesn’t mean you have celiac”. I shared with him the information that I read online and in Dangerous Grains about the correlation between DH and Celiac and he said….”Well…That may be true. I don’t know.”

I told him my GI issues and my family history and he told me that I probably have celiac but unless I take the gluten challenge and have an endoscopy there is no way to know.- C’MON! I have a positive skin biopsy for DH (I gave him a copy). My father’s relatives (from Sweden) all died from digestive cancers.
Isn’t it the National Institute of Health that does not recommend endoscopies for DH because it is pointless? If you have DH you have celiac! You may not have as severe intestinal damage but according to The Gluten-Free Bible, Dangerous Grains, and Gluten-Free for Dummies almost all DH patients have some intestinal damage. It just may be hard to find.

Whatever- it doesn’t really matter. The cure for DH and celiac is the same- THE DIET. I shouldn’t even care, but it bugs me that I can’t find a dermatologist that knows about celiac or a GI doctor that knows about DH. He didn’t even know that his name was printed in The Gluten-Free Bible. LOL!

Am I crazy or is all of this odd?????
Thanks for reading my vent- any advice would be greatly appreciated.
Meredith

I don't have any advice but I am sorry.

Hi Meredith,

Sorry about the lack of knowledge on your doctors' part. I don't blame you at all for being upset!

On page 52 of Dr. Peter Green's book--"Celiac Disease A Hidden Epidemic", he states (in bold print, I might add)

"If you have a skin biopsy and it is positive for dermatitis herpetiformis, you do not need to have an intestinal biopsy--you have a confirmed diagnosis of Celiac Disease."

Wow, Patti, that is interesting. I have to give that one to my student, Kathy. She has her DH diagnosis, but the celiac diagnosis wasn't quite so clear. And now she is in denial and said several times "Oh, I don't have it so severe as you Stef." She was cheating on the diet before, I'm not sure, if she's still cheating anymore, but in restaurants, she still isn't as careful as she should be. I told her several times "Kathy, there is no severity level. Either you have it or you don't. You can't just be only a little bit pregnant... right?" Why is that so hard to understand by some people. I don't get it. I will print out what you said, Patti, and show it to her. Maybe we can look it up in this book.

Thanks for posting!

I'm reading Dangerous Grains and it also says (on p 75) that a skin biopsy of DH "offers another approach to obtaining an accurate diagnosis of celiac."
I had this biopsy- I read the results with my own eyes in black and white. I really don't think I should have to put my body through the damaging effects of the gluten challenge. Wait...reword that...I won't put my body through the gluten challenge.

These books weren't kidding when they said that doctors really aren't up to date with the new research!

Meredith,

I don't have any advice, but just wanted to say sorry. It's amazing that there are still SO many doctor's that know very little to nothing about Celiac or DH. I am starting to feel better physically (still getting new rashes everyday) so I have decided I am not going to bother trying to get a biopsy. I mainly wanted this to show what kind of damage I has been done.

Take care, Stephanie

Unfortunately no that is not odd in the US. Here it seems we are all 'pieces' of a breathing puzzle, each doctor gets his select number of pieces to put together. Once he is done he puts it aside and they never get together and form the whole picture. If only they would then maybe so many of us would not be labeled as crazy.
I have DH and neuro predominent celiac and the GI stuff did not get severe till my last child was born. Then I got the I B(e) S(tupid) label for years even after it became more like Chrons. My GI knew nothing of the neuro related problems and looked at me like I was from space when during my last illness, diverticulitis, I said I knew it was not gluten related because I had no neuro symptoms when it hit. When I asked for a script for something to help me with sleeping and anxiety produced teeth grinding that I could keep on hand for the rare, maybe 2 times a year that I now get glutened you would have thought I was asking for heroin. He told me to make an appointment with my neuro for that. Of course he was also the doctor who when I was first refered only did a colonoscopy, he really is clueless, and we had to really insist that he do an endo and biopsies, even then he only did 2, on my DD. He was amazed at the results and reluctlantly told her to be gluten-free afterwards. Your not alone.
There is no rush in this country to diagnose us, and there will not be until they have some pill for it. Which by the way I will never touch. After all they lost 17 grand in copays alone a year from just me, imagine if they actually diagnosed all of us how many less scripts and tests would be ordered. It may sound cynical but until there is money in diagnosing us there isn't going to be much improvement IMHO.

No they don't know a lot about celiac are DH but they do know how to use that pen and precription pad.I guess they studied that alot in school.

OMG! I had to add this recent event to round out this whole experience! He just called me back with the results from my blood test. He forgot who I was and gave me the results like he had never met me. Here is my exciting dramatazation:

Doc: I have the results from your bloodtest and it looks like the bloodtest shows that you have celiac disease.
Me: UH...Yeah...I know.
Doc: Now who first told you that you may have it? Why did you think you did in the first place? Have I met with you?
Me: We met on Friday. I have the skin biopsy that is positive for DH.
Doc: OH! I remember you! Well the good news is that your numbers are not that high. I would expect higher for someone consuming gluten.
Me: I'm not consuming gluten. I have been gluten free for a month.
Doc: Oh. Nevermind. This test means that you are not truly gluten free then. You need to carefully scrutinize everything you eat because you still have traces of gluten.

SIGH!
Is it so much to ask for a knowledgeable doctor who remembers you?

Omg what a freak. Now are you sure he gave you your results lol. I so miss my old dr, he was supposed to retire when i found out i was pg for the first time. So once he knew i was pg, he put on hold for 9.5 months lol. When i was overdue, he did not sleep, he was so worried about me. Either he would call me or his wife every day to see how i was. Everytime his phone would ring in the middle of the night he would hope it was me, of course it never was so fianlly after 2 weeks of being overdue he is like we need to induce you, or he was going to be in the hospital for exhaustion. I still can call him when i have a problem, even tho he is not practicing anymore. I wish they made the new generation drs more like they made him.

Is this the only time you seen this dr. If it was i dont think i would be going back to him lol.

paula

LOL What a winner he is. Well at least you have a conclusive diagnosis and don't have to go through all kinds of nasty tests to get it. Oh well there are good doctors out there, they are just so darned hard to find.