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Should I Be Gluten Free While Waiting For Biopsy?


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6 replies to this topic

#1 JessF

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Posted 04 February 2013 - 04:14 PM

Hi everyone,
I had the celiac panel bloodwork a couple weeks ago. One of the antibodies was positive but the rest were not so I already had an endoscopy scheduled so she is going to do the biopsy then (in two weeks from now).They did try to move up my endoscopy but I wasnt able to do the couple days they had free. I began going gluten-free to see how I felt. I have been feeling better on gluten-free. I recently read that you shouldnt be gluten-free before testing or it may show a false negative. Do I really need to go back to eating gluten when it makes me feel so bad?
Thanks for any advice:)

Jess
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#2 mommida

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Posted 04 February 2013 - 05:50 PM

Youn need to be eating gluten. The test is being done to examine the damage caused by gluten.
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#3 psawyer

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Posted 04 February 2013 - 06:47 PM

Do not switch to the gluten-free diet until ALL testing has been completed. If you do go gluten-free, false negative test results are possible.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#4 Julia

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Posted 06 February 2013 - 04:40 PM

Do not switch to the gluten-free diet until ALL testing has been completed. If you do go gluten-free, false negative test results are possible.

Hello, I am new here, and am in a similar situation. I"m having to push for my testing, etc. I was biopsied years ago and it was negative. In the last 6 years, I had a baby, then had new symptoms, issues, etc. I was advised by a rheumatologist to just try the gluten free diet for my symptoms and within 3 weeks I am 80% better. It's SO dramatic that it is easy to avoid gluten now. However, since it IS so dramatic, and I have a young daughter, it seems unsafe not to find out for sure if I have celiac, versus just an intolerance. My question is: I know I should be on gluten while I await dx yet longer - but I don't know how long it will be and I am almost non-functional while on gluten. I will be grateful for ANY advice on how to stay on gluten and manage during that interval. How much gluten do I have to be on? Hints on coping?

Many thanks, I'm so glad this exists!
Julia
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#5 mushroom

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Posted 06 February 2013 - 06:52 PM

Hello, I am new here, and am in a similar situation. I"m having to push for my testing, etc. I was biopsied years ago and it was negative. In the last 6 years, I had a baby, then had new symptoms, issues, etc. I was advised by a rheumatologist to just try the gluten free diet for my symptoms and within 3 weeks I am 80% better. It's SO dramatic that it is easy to avoid gluten now. However, since it IS so dramatic, and I have a young daughter, it seems unsafe not to find out for sure if I have celiac, versus just an intolerance. My question is: I know I should be on gluten while I await dx yet longer - but I don't know how long it will be and I am almost non-functional while on gluten. I will be grateful for ANY advice on how to stay on gluten and manage during that interval. How much gluten do I have to be on? Hints on coping?

Many thanks, I'm so glad this exists!
Julia


Unfortunately, Julia, Peter's statement means exactly what it says - "until all testing is completed", including the endoscopy. The routinely accepted amount of gluten is the equivalent of 2-4 slices of bread a day, so you don't have to pack gluten into every meal, but you do have to make sure you are not eating 'gluten lite' :) As for how long, the estimates are widely variable at the moment as to how long a gluten challenge should last. Since you have been gluten free three weeks, you will probably have to do a "full" challenge, which may be up to 6-8 weeks. I don't know how quickly or how long you drastically react to gluten; maybe you could make gluten your evening meal, "sleep it off" overnight, and function the next day? Or make it breakfast, be able to function during the day and collapse at night? Or maybe it will last all day and all night :wacko:

How to handle? Take digestive enzymes to help digest your food, take probiotics to improve your gut flora, drink lots of water, take Tums or Pepto Bismol as warranted (or Gas-X - gelcaps only, not chewable), something for GERD if that's what you get. It's going to be miserable no matter which way you cut it. I wish doctors would just run the damned tests first when they come up with these brainwaves :rolleyes:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Self-diagnosed gluten intolerant, gluten-free Nov. 2007
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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

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#6 cavernio

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Posted 07 February 2013 - 09:30 AM

'just' gluten intolerance is very real. Poorly understood, not medically diagnosed usually, but it still appears to be an auto-immune disorder. However, getting diagnosed for certain will ensure you get proper treatment later on in life. I don't know how young you can begin testing for celiac in kids, but there's a 10% chance you kid is/will be celiac. Probably higher if we include gluten intolerance for either her or you.

But to re-iterate, yes, you must eat gluten or else your tests are likely to show false negatives.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#7 JessF

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Posted 08 February 2013 - 05:50 AM

Thanks for your replies everyone! I started back on gluten. I feel yucky agian too:( I am trying to think positively and eat all of my favorite gluteny food that I may never be able to eat again-my favorite pizza, McDonalds fries, garlic bread, etc

Julia I am sorry you are going through this too. I started feeling crummy 11 years ago after my daughter was born and after many doctors, specialists, etc I was finally diagnosed with fibromyalgia about 6 years ago. Now I am wondering if I had celiac then, ugh! I hope not because that is alot of years of destroying my intestines with gluten! Good luck!

Jess
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