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Gi Said. I Didn't Need To Be Gluten-Free

Libra1952

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Libra1952 Newbie
Libra1952
Posted

New to this, but 10 years ago diagnosed with biopsy that I had celiacs disease.All that was said by my gastrologist was as long as you dont start loosing weight without dieting and have cronic diarrhea no need to go gluten free.Well 10 years later bones, mustles, anemia to name a few are driving me nuts!!! And oh yeh still heavy and no diarrhea!!! Anyone else go through this??

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kareng Grand Master
kareng
Posted

Sorry. I split this post off because it needed its own thread. My spell check messed up the title. GI not Gina! I'll see if I can get it fixed

mushroom Proficient
mushroom
Posted

Welcome to the forum, libra, where you will learn that your GI is not the only one to have given such unfortunate advice. I think (trust / hope) that it is finally coming to an end, but there are still some old school types out there who refuse to update their knowledge.

I am so sorry that you were given and followed this advice, and have now suffered its consequences. As you have discovered, gluten can still be doing its damage even if you are not suffering overt symptoms. It can be very sneaky that way. I hope you have now found yourself a good doctor who is taking care of you. Have you had your tests rerun? Have you had nutrient testing for key vitamins and minerals? :)

Perhaps most importantly, have you gone gluten free and are you starting to feel any better? Please talk to us some more and let us know if there is any way we can help you.

shadowicewolf Proficient
shadowicewolf
Posted

this is one of those moments when we need a facepalm emotion. Ugh, doctors huh?

Please tell me you are gluten free, there is no need to put yourself through all that. :(

tarnalberry Community Regular
tarnalberry
Posted

Your GI was entirely, completely, wrong. Like malpractice level wrong. Even for the level of understanding of the disease 10 years ago.

SMDBill Apprentice
SMDBill
Posted

I agree with the "malpractice wrong". I wonder if they put any of that advice in writing so you'd have grounds to act on other than he said/she said. That's ridiculous advice for a celiac patient. There are no caveats on when to and when not to eat gluten for celiacs. You can't...period.

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    • trents
      Bob red mill gluten free oats

      By trents · Posted

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      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
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