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How Many People Here Had Negative Bloodwork, Negative Biopsy But Still Respond To Gluten-free Diet?


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#1 glutenmommy

 
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Posted 13 October 2009 - 11:09 AM

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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#2 tarnalberry

 
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Posted 13 October 2009 - 11:41 AM

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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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 CHARBEEGOOD

 
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Posted 13 October 2009 - 04:54 PM

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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Char

#4 CHARBEEGOOD

 
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Posted 13 October 2009 - 05:01 PM

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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Char

#5 buffandpuff

 
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Posted 14 October 2009 - 05:04 AM

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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#6 nora_n

 
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Posted 15 October 2009 - 07:02 AM

I had negative tests too.
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#7 nasalady

 
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Posted 15 October 2009 - 07:24 AM

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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Multiple autoimmune diseases, including celiac, Hashimoto's, psoriasis, autoimmune hepatitis, RA, SLE. Also have fibromyalgia.

Tested Fall 2008: bloodwork, biopsy negative; HLA DQ8. Doctor believes results negative due to prednisone and Imuran taken for autoimmune hepatitis.

Dx with celiac disease because of dietary response, genetics, and family history of celiac disease.


Dx with Lyme Disease Jan 2010; Lyme likely triggered some of the AI diseases.

Gluten free since 25 Nov 2008

#8 homemaker

 
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Posted 15 October 2009 - 08:02 AM

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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Constipation, Gas, Bloating, Abdominal Pain, Ataxia, Brain Fog, Joint Pain Headaches
Bloodwork Negative
Went gluten free 10/02/09
Immediate and Positive intestinal improvement with improvement in headache frequency
Enterolab results 11/23/09 (after one month gluten free)
Fecal Anti-tissue Transglutaminase IgA 10 units
Fecal Anti-gliadin IgA 9 units
Fecal Fat 1267 units
HLA-DQB1 Allele 1: 0201
HLA-DQB1 Allele 2: 0202
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

#9 elye

 
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Posted 15 October 2009 - 10:32 AM

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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Emily

diagnosed type one diabetic 1973
diagnosed celiac winter 2005
diagnosed hypothyroid spring 2006

But healthy and happy! Posted Image


11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.
--Pierre Joseph Proudhon (1809-1865)

#10 pufffee

 
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Posted 15 October 2009 - 10:47 AM

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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#11 nora_n

 
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Posted 18 October 2009 - 04:06 AM

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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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#12 Skye_N

 
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Posted 19 October 2009 - 11:00 AM

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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Skye
Gluten free since September 2006




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