Biopsy Results

[Moondanse]

My doctor called today and left a voicemail telling me that the results of my biopsy came in and the findings were consistent with Celiac Disease. He recommends that I see a nutritionist and "have a nice day." I was a bit annoyed that he left me the results in a voicemail. Though I wasn't surprised that he didn't offer up any other support (based on what I've read from all of you), I was still annoyed by that as well. So, I called to speak with his nurse. She sounded so put out that I was calling because the doctor was not in the office today and he already called and left me a message with my results.....blah, blah, blah.

What is wrong with these people? They give you a life altering diagnosis and then say "good luck". Now, to my credit, I probably know more than they could possibly share with me at this point. But, it would be nice to feel like they even care about the people that they treat. I was able to get the name of two nutritionists from her, at the very least.

I did ask about checking for any vitamin deficiencies and she actually said she didn't see why that would be necessary since the biopsy confirms the cause of my symptoms. I may be wrong, but we're dealing with malabsorption here -- wouldn't it be prudent to check for any deficiencies???

I'm sorry, I probably sound very crabby, but I'm just irritated. Does anyone know if there are any further tests that they (the doctor) can do to check for other food intolerances (soy, casein, etc)?? I know that enterolab can test for other things, but I was hoping that the doctor might be able to do some (insurance would cover it that way).

Thank you all for being here and sharing your experiences and knowledge. I've learned most of what I know from reading all of your posts. I can't believe that I finally have a diagnosis!!!!

[Canadian Karen]

Your doctor's blase attitude doesn't surprise me in the least. Unfortunately, he is in the rather large "uneducated" group of doctors.

It is wonderful that you finally have an answer and can start your diet right away and get your health back! From my experience, all the nutritionist did for me was take out her binder off a shelf, take out the page that said "gluten free diet" on it and photocopied it for me. Nothing more, and let me tell ya, that page didn't have a heck of a lot of info on it! LOL! Perhaps you will have more luck seeing one in your area that actually is up to date on celiac.

Ask as many questions as you want, that's what we're here for!

Hugs.

Karen

[jerseyangel]

Unfortuantely, your doctor's response was fairly typical.

I was told to begin a gluten-free, lactose free diet and come back in 2 months. I called the nurse a few days later to ask if they had a gluten-free foods list. She didn't know! She had to check into it and get back to me. Well, they did, but it was (I know now) hopelessly outdated.

Even at the 2 month appt, once he heard that the diet was helping, he closed my file and opened the door.

At my 6 month appt., he asked "how my bowels were" and didn't want to discuss my questions about additional food intolerance (which I was beginning to experience)

All the info I need, I get here. It is sad that a lot of doctors don't/can't help us more, but I guess we should at least be glad that we got a diagnosis--lot of people don't even get that.

If you haven't read it yet, a book I'd recommed to you is "Wheat Free Worry Free" by Dana Korn. I think it's a great book for those just beginning the gluten-free lifestyle.

If there's anyway we can help, don't hesitate to ask

[wowzer]

I feel your frustration about your doctor. It can be so frustrating. There has to be a doctor out there some where that has knowledge of this. You may want to check at a teaching hospital. I just realized that a doctor I had been seeing for 17 years clearly did not know how to deal with me. I have MRKH which is not related at all to celiac disease. I only figured it out because I picked up my records to go to a specialist. It was very upsetting to me when I realized he had no clue. I can understand the frustration of not being helped with your diagnosis. At least we now have the internet as a great tool. I had a negative blood test for celiac, although my family doctor agreed that I could still have it. I did have a biopsy although I'm not sure they were looking for DH. It came back spongiotic dermatitis. Which boils down to they don't know what it is. Searching on the internet I found that one of the natural cures was a gluten free diet. I had started it a couple days before I had the biopsy anyway. Good luck. Wendy