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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:

Karina

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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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    • I_would_widen_the_search_to_your_whole_environment.....Carefully_consider_what_else_was_different_when_you_felt_better.
    • Thanks a lot for your advice and the link. I will surely check upon GCED. But, doesn't a negative HTTG (can't do IgA ttg as IgA deficiency) result mean that I am not exposed to gluten ? 
    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
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