Am I Celiac? Negative Blood Test and Biopsy

[CourtneyH]

Okay so here is the story.

Ever since I have been about nine years old I have had intense stomach cramping, bloating, gas, diarrhea, constipation and overall abdominal pain to the point where my parents thought I was having appendicitis. I was then told that I had IBS. I am currently 21 and over the past 5 years or so I have also developed numbness in the hands, migraines, pale skin, exhaustion, acid reflux, heartburn, dizziness, B12 deficiency, constant canker sores, random fevers, chills, and random rashes on my face, chest, stomach, and back.  

My doctor had given a blood test before to test for celiac disease (was not told to eat gluten or anything before hand which I have heard is recommended), which came back negative and continued to insist I just had IBS. I then decided enough was enough and demanded a referral to a gastrologist. It took about 6 months to get the appt. and her first question for me upon reviewing my symptoms was whether or not I had been tested for celiac disease which I, of course, told her I had and it was negative. She gave me a colonoscopy and endoscopy to check for any damage and as she said, "to see what's going on in there". All I got back was a form saying routine biopsies were taken and no abnormalities were found, she gave me a prescription for Ranitidine for the acid reflux (which made it much worse) and said it is likely IBS. 

At this point, I decided I needed help managing my lifestyle because I was in pain every day despite avoiding foods high in fats, oils, sugars, salts, and preservatives nothing was helping. I went to a Naturopath who upon reviewing my symptoms she was confident it was Celiac, though she could not offer an official diagnosis being a Naturopath. I have been off gluten for over a month now and mostly all my symptoms have resided except the acid reflux. I accidently ate gluten about a week ago which resulted in severe abdominal pain, constipation, a rash on my face, neck, chest, stomach, and back and fevers on and off for four days. 

I am wondering if it is possible that I do in fact have celiac disease despite the negative blood test and biopsy? I would like to be taken seriously and not seen as someone else following the gluten-free trend but is it worth seeking out an official diagnosis?

[TexasJen]

Sure, it's definitely possible....Now to prove it.  Is there anyway that you can get copies of the labs and the pathology report that the doctors did?  Maybe they did everything correctly.... Here's a link to interpreting the blood tests. If the doc only ordered one or two of the panel of tests, you could have a false negative...

https://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-Results/Page1.html

If they did everything correctly, and it was negative, you might still consider getting the blood work again - while you are still eating gluten. The tests could be a false negative if you were gluten free at the time.

 

People post their results here all the time for the community to look at and comment upon.:)

If that all is negative, you could still have non-celiac gluten sensitivity.....

Best of luck!

 

 

[Cat59]

Hi, my doctor explained to me that Celiac Disease is only a small part of gluten sensitivity.  She said that you have have a really strong reaction to gluten and it can cause way more problems then just intestinal damage.  Right now I am currently  going through all the testing myself.  They found high levels of the Anti-gliadin IgA in a stool test and also high results in the secretory IgA.  My doctors says that Celiac will show up in the stool before it shows up in the blood or the damage in the intestines.  Especially if you are in the beginning stages of the disease.  The problem with most GI Doctors they only look at Celiac disease and not a really strong intolerance.  They also do not usually order the stool tests to see what is causing the inflammation.  I highly recommend that you go to a Naturopathic Doctor and ask for a stool test.  Mine was done by Diagnostic Solutions.  Then I had a food intolerances test done by US BioTek which also showed a reaction to wheat gliadin and wheat gluten. So at this point I am waiting for the biopsy results on my Upper GI I just had today.  The report so far says that the duodenum looked normal but that they  biopsied it anyway.  My stool tests also revealed that I had too low levels of the good flora and three bad bacterias.  So you definitely want to get that test done to rule out bad bacteria.  Keep us posted.

Thanks, Cat59

[kareng]

18 minutes ago, Cat59 said:

Hi, my doctor explained to me that Celiac Disease is only a small part of gluten sensitivity.  She said that you have have a really strong reaction to gluten and it can cause way more problems then just intestinal damage.  Right now I am currently  going through all the testing myself.  They found high levels of the Anti-gliadin IgA in a stool test and also high results in the secretory IgA.  My doctors says that Celiac will show up in the stool before it shows up in the blood or the damage in the intestines.  Especially if you are in the beginning stages of the disease.  The problem with most GI Doctors they only look at Celiac disease and not a really strong intolerance.  They also do not usually order the stool tests to see what is causing the inflammation.  I highly recommend that you go to a Naturopathic Doctor and ask for a stool test.  Mine was done by Diagnostic Solutions.  Then I had a food intolerances test done by US BioTek which also showed a reaction to wheat gliadin and wheat gluten. So at this point I am waiting for the biopsy results on my Upper GI I just had today.  The report so far says that the duodenum looked normal but that they  biopsied it anyway.  My stool tests also revealed that I had too low levels of the good flora and three bad bacterias.  So you definitely want to get that test done to rule out bad bacteria.  Keep us posted.

Thanks, Cat59

Stool tests are not considered a valid way to diagnoses Celiac disease at this time.

...Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease. We can say therefore with confidence that the test currently being used by these labs is not good enough.  ...

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"There are no tests to diagnose non-celiac gluten sensitivity at this time. Which means, no research has been through a scientific, evidence-based, peer-reviewed study that proves what some labs claim as a way to detect non-celiac gluten sensitivity. "

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[Cat59]

Well at this time I also tested positive to a gluten and gliadin IgA and IgG blood test.  My GI doctor took the stool test serious enough to order the biopsy. My stool test was done by Diagnostic Solutions, ordered by my Naturopathic Doctor. Since the disease effects the intestines it makes since that the antibodies would appear there first.  That is where the reaction is. In addition to the inability to test for gluten sensitivity, that fact is that there are blood tests that test for all kinds of food intolerences. US Biotek does blood tests for IgA and IgG reactions using the ELISA methodology.

[emma6]

12 hours ago, Cat59 said:

Well at this time I also tested positive to a gluten and gliadin IgA and IgG blood test.  My GI doctor took the stool test serious enough to order the biopsy. My stool test was done by Diagnostic Solutions, ordered by my Naturopathic Doctor. Since the disease effects the intestines it makes since that the antibodies would appear there first.  That is where the reaction is. In addition to the inability to test for gluten sensitivity, that fact is that there are blood tests that test for all kinds of food intolerences. US Biotek does blood tests for IgA and IgG reactions using the ELISA methodology.

there are tests available for food intolerance testing but they are not scientifically reliable, which is why doctors do not use them. there are a whole range of tests you can order which are used by alternative practitioners but unfortunately most of them have no medical value and are essentially scamming you. if your gluten and gliadin IGA/IGG were part of the food intolerance test results I wouldn't trust the accuracy, they are not the same as the celiac panel blood tests. it doesn't mean you don't have celiac, gluten intolerance or food intolerances, just that those tests can not tell you.

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