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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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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
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    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
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