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How Many People Here Had Negative Bloodwork, Negative Biopsy But Still Respond To Gluten-free Diet?
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All of my bloodwork came back normal on the complete celiac panel. I'm still waiting on the results of my endoscopy done last Friday, but my doctor said he didn't see any evidence of villi damage during the procedure. I haven't had ANY gluten since last Wednesday; ALL of my diarrhea is gone (usually 7-10 times per day! yuck), ALL of the gas and bloating is gone; ALL of the heartburn is gone!!! I have lost nearly 5 lbs of bloating and intracellular fluid. I already knew I would respond to the diet because I did an elimination diet earlier this summer.

It doesn't really matter to me whether I have a diagnosis of "celiac" or not. I'm just wondering how many of you are like me: negative all the way around but still respond beautifully to the diet. (Of course, I suppose my endo could still come back positive -- I'll post as soon as I get the results)

Thanks!

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my blood tests were 'inconclusive' (most doctors would have read them as negative), but I had been gluten free for two weeks.

I never did an endoscopy.

I did a 'gluten challenge' - I ate a large amount of gluten after having been gluten free. felt awful.

the bloating, bourbourygmi (gurgling noises going through the intestines - turns out it's not normal to have a lot of that), and inconsistent stool cleared up, but I was never *hugely* symptomatic.

my doc and I both decided, it feels better to not eat gluten than to eat it, so I don't eat it. asfaik, I do not have a 'formal' celiac diagnosis.

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All of my bloodwork came back normal on the complete celiac panel. I'm still waiting on the results of my endoscopy done last Friday, but my doctor said he didn't see any evidence of villi damage during the procedure. I haven't had ANY gluten since last Wednesday; ALL of my diarrhea is gone (usually 7-10 times per day! yuck), ALL of the gas and bloating is gone; ALL of the heartburn is gone!!! I have lost nearly 5 lbs of bloating and intracellular fluid. I already knew I would respond to the diet because I did an elimination diet earlier this summer.

It doesn't really matter to me whether I have a diagnosis of "celiac" or not. I'm just wondering how many of you are like me: negative all the way around but still respond beautifully to the diet. (Of course, I suppose my endo could still come back positive -- I'll post as soon as I get the results)

Thanks!

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All of my bloodwork came back normal on the complete celiac panel. I'm still waiting on the results of my endoscopy done last Friday, but my doctor said he didn't see any evidence of villi damage during the procedure. I haven't had ANY gluten since last Wednesday; ALL of my diarrhea is gone (usually 7-10 times per day! yuck), ALL of the gas and bloating is gone; ALL of the heartburn is gone!!! I have lost nearly 5 lbs of bloating and intracellular fluid. I already knew I would respond to the diet because I did an elimination diet earlier this summer.

It doesn't really matter to me whether I have a diagnosis of "celiac" or not. I'm just wondering how many of you are like me: negative all the way around but still respond beautifully to the diet. (Of course, I suppose my endo could still come back positive -- I'll post as soon as I get the results)

Thanks!

I understand how you feel. I was diagnosed with multiple food allergies but never told I had celiacs. I have had an endoscopic done as well as an up GI endoscopic done as well. My results came back negative but with my allergies (Soy, Oat and most recently lactose intolerant) it was decided that a gluten free diet would be the wisest move. I also have several family members that are gluten intolerant. It took several tests and in some cases years for the results to be conclusive.

Good Luck hope you continue to feel better.

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O.k. have been gluten free on an elimination diet for almost 8 weeks. The dr. decided to do an anitbody test anyway, even though I told him I wasn't going to eat gluten again just for the test. Obviously, the blood work came back negative. He has "clinically" diagnosed me because he said I had many of the symptoms, but medically it's not in my record. I guess that's not such a bad thing because I won't be given a hard time about pre-existing conditions. I recently had an endoscopy but they never checked the small intestine because that's not what we were looking for at that point. Anyway, I'm in the same boat as you -- but honestly I feel so good w/o it, it doesn't matter to me whether I have a piece of paper with a diagnosis.

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I had negative tests too.

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I had negative results for both biopsy and blood work but my gastro said he had expected that because I was on high doses of prednisone and Imuran for my autoimmune hepatitis, and these drugs will also suppress the celiac autoantibodies and allow the villi to re-generate. He diagnosed me based on my response to the gluten-free diet, my family history of celiac disease, genetic marker HLA DQ8, and my talent for developing AI diseases.

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Count me in this group too! I had negative bloodwork...and went gluten-free before the endoscope...

Didn't bother...I did order enterolab gene and stool complete...should come in a few days..

I have had positive results going gluten-free, I have been gluten-free for two weeks now! :)

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My husband had "negative" results on the blood panel and the endoscope, but a very high count of the antibodies in his stool through Enterolab. There was also a large percentage of fat in his stool, which is suggestive of gluten/malapsorption issues.

He started eating gluten-free right after we got the stool results, and all of his gastrointestinal symptoms were gone within a couple of weeks.

So count him in!

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Hi

Wow, It is so nice to hear so many people with my situation. I to was negative in blood and biopsy. I was told by another specialist that a biopsy is useless unless you take a minimum of 6 biopsys to test for Celiac. I have been gluten free now for several weeks, although I am feeling much better, I am still bloated everyday. I figured I might have Lactose intolerence since Milk, cheese, and other milk products have been in my life before and after going gluten free. I have only been lactose free for a couple of days and feel better EXCEPT when I was eating pepperonis with my rice crackers. Pepperonis have Lactic Acid Starter Culture(the only unique ingredient I can find). My stomach immediatley blows up and gurgles. I only put one in one together today after reading the internet for what seemed like hours to learn what LASC is. Wonder if anyone else is Dairy free and had similar problems. This could be a major break through for me. My Dr only gave me a genetic blood test for Lactose intolerence so that was pointless. Rather then right test with solution or breath test. It is amazing how quick Dr's are to eliminate or choose a diagnosis to shut you up. THANKS in Advance

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Hi, the genetic test for lactose intolerance works the other way around, meaning if you are negative on that test, your lactose intolerance comes from something else, like celiac or gluten intolerance.

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I had stopped eating gluten for a couple of months and felt amazingly better when I took the blood test, which of course came out negative. The doctor just told me that I didn't have it. I later went to a Celiac specialist who told me that the test is only acurate while still eating gluten. I get extremely ill even with small amounts so I have not been willing to make myself sick just for the sake of a test result. I have another friend who tested negative even though she and her family all have it.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
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