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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5 replies to this topic
#2
kareng
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Argh! Happy Halloween!
Posted 25 November 2012 - 02:43 PM
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
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#3
mushroom
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Mushroom
Posted 25 November 2012 - 03:00 PM
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.
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.
Neroli
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
------------
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
#4
shadowicewolf
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Posted 25 November 2012 - 03:41 PM
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.
Please tell me you are gluten free, there is no need to put yourself through all that.
#5
tarnalberry
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Posted 25 November 2012 - 07:16 PM
Your GI was entirely, completely, wrong. Like malpractice level wrong. Even for the level of understanding of the disease 10 years ago.
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA
#6
SMDBill
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Posted 26 November 2012 - 06:43 AM
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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