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Doc Gave Me Huge Celiac Packet...

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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:



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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...


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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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    • Already had that looking on experience and in the end had to leave the room as it was unbearable just sitting there with people laughing at me not being able to eat, yup people are cruel and really show their colours at times like this. Tbh based on the reactions I've had from people my age so far the kissing thing will be irrelevant as no one will stick around to get that far. Since the diagnosis whenever the gluten stuff has come up I've been belittled and made the butt of jokes. Then even people who previously were OK with it started jumping on the bandwagon too. Seems like the alternative to the "bad ones" is no one, which is even worse @GFinDC it's the time thing that's really getting me down right now. Feel like I've lost out so much already and the thought of losing another year or two to this is driving me crazy, especially when I see others my age making the most of their lives and I know with this I can't do the same.  I'm exactly one of those people you described, never been interested in cooking and vegetarian too which rules out this paleo diet everyone seems to use as gut healing. Just adds to the feeling of being lost in all this and once I close the forum window I'm on my own. Still wondering if to do those Cyrex tests to find out early on which other foods may be problematic. Part of me isn't convinced they're scientifically proven enough to be useful but then others seem to have had useful result. Trouble is it's not cheap and already been drained money-wise by these private hospital visits so have to pick the treatments wisely...
    • Ifyour using local  agricultural products  check into and your state dept  of ag.  You can  also check to see the types of projects that are available.  GOOD LUCK  
    • Q: My friends are talking about gluten-free diets and gluten-free foods. ... In celiac disease, the immune system identifies gluten as a foreign invader ... View the full article
    • Yes, GFinDC you've got the gyst of what I am after. If I am reading your response correctly then, you think that inflammation in the gut caused by gluten ingestion is enough to trigger diarrhea, quite apart from the state of one's mucosa? That would be good news for me. More information on this inflammation reaction in the gut with gluten ingestion is precisely what I am after, but cannot seem to find. Because, as stated, as far as I know, D is mostly if not only, caused by flattened villi. OTOH, how interesting to hear from you, cycling lady, that you had flattened villi and no D! RMI, the link is quite depressing. Many appear not to have healed mucosas after a gluten-free diet. A repeat endoscopy is what is so clearly needed by many of us, but honestly I am a little wary of the risks.
    • No, they didn't test my ttg igg, which I was surprised about considering the low IgA and positive DGP Igg. (The tests they did were IgA serum, Ttg IgA, DGP Igg and IgA and gene testing) If he ever returns my call, I was going to ask him about that.  He initially wanted to set up a endoscopy, but I told him I had one last year (with my prior GI) and he said he'd take a look at it and we'd go from there, except that was two weeks ago and I haven't heard from him.  My prior GI did take biopsies, I believe to rule out H.Pylori and I was told biopsy results were normal, however, I didn't receive a pathology report or anything like that.
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