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Should I Be Gluten Free While Waiting For Biopsy?
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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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Youn need to be eating gluten. The test is being done to examine the damage caused by gluten.

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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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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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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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'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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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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    • 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!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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