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Doc Gave Me Huge Celiac Packet...

Karina

By Karina
in Doctors

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Karina Explorer
Karina
Posted

Hi all! I just received my biopsy results from the doc's office, and there was damage consistent with celiac disease. The nurse set me up for an appt. three weeks away to discuss everything, and then she said she was sending me information to look over in the meantime. I wondered why so long before the appt. (she said doc specifically wanted to wait 2-4 weeks to see me), and now I know. I got the packet today, and there is like 150 pages of info here! They have sent me all kinds of brochers from gluten-free manufacturers, info on celiac disease, business cards of support group people in my area, a dieticians card who specializes in celiac disease, book listings, gluten-free consumer guideline (to be purchased), and on and on. I have to say that my experience with this doc has been a mixed bag. I've only seen him twice (consult, then endoscopy--he is a GI). He seemed to pick up on the celiac disease diagnosis immediately--he was pretty convinced before the bloodwork, and when the bloodwork came back he said we just needed to make it "official" and document it. From what I have read here about many others experiences I feel I should be impressed that he picked up on this diagnosis so quickly. BUT,...he said to me that if I have celiac disease (before the testing), I don't HAVE to do ANYTHING, if I don't want to. He said I could file it away for now if I wanted and if I could live with the symptoms, but he said that he knew a lot of people who felt great on the gluten-free diet, and it might be something to consider. Well, now that I have researched celiac disease, I know I cannot continue consuming gluten, I know it is very dangerous in fact and just asking for trouble....that is continued trouble....I don't even know what all I am dealing with, I figure I need a bone scan and some blood work to be able to treat whatever deficiencies may have been caused by this disease so far. I am surprised at my doc's attitude about the diet. On one hand he seems so informed, on the other is he was so informed he would be telling me "YOu better not eat any gluten, girl!" I know when he suggested celiac disease, I was like "NO WAY!, I know I don't have a problem with wheat--I LOVE wheat!" (I didn't know better), so maybe he was just trying to ease me into it or not scare me, I don't know. I was wondering what some of your thoughts about this doc were based on what I posted here. Also, does a GI manage celiac disease, or does your family MD? I know the patient really manages it, what I mean is--who is your "go to" person about celiac disease? I appreciate the responses! :rolleyes:

Karina

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tarnalberry Community Regular
tarnalberry
Posted

I'd give him the benefit of the doubt, since he does seem so knowledgeable. It may have been he was trying to emphasize that it is your choice, and not an _immediate_, _catostrophic_ danger to your health. (I don't dispute it's a danger to your health, I just mean that - if in your case the symptoms are not severe - you're VERY unlikely to die the day after you eat a slice of bread _because_ of the slice of bread.)

(I had one orthopaedist tell me that - with my knees - I should never run again. I left the office in tears. A subsequent (and better) orthopaedist, told me that - yes, if I keep running, I may need knee replacement surgery fairly early in life and that I will continue to have relatively severe pain. But he also told me that it is my choice and that I have to weigh for myself how much not running AT ALL will affect the rest of my life. It is a different situation, of course, because of the nature of the two different conditions. I'm just noting that some doctors like to remind the patient that the power of treatment is in the patient's hands.)

You might talk to him further about it, and understand where he's coming from before you look into switching doctors. It is possible he's good at spotting it, but not treating it, but it could be a misunderstanding as well...

travelthomas Apprentice
travelthomas
Posted

Hi Karina,

From my experience with celiac disease I drifted along feeling just okay, and then around the age of 43 I had a total melt down, after picking up some viral infection. If I hadn

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      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
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      how much gluten do I need to eat before blood tests?

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