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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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