false positive gluten antibodies blood test
#12098 - 06/19/03 08:11 PM
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hawkeye
Reged: 06/16/03
Posts: 705
Loc: NYC
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I'm wondering if anyone has similar experience to this. I tested positive for celiac sprue, when I had blood work done. Then I had an endoscopy and a biopsy and thankfully, turned out not to have celiac's after all. But my doc did think that I should try giving up wheat for a while. I did it for 6 months now, and I've had enough. I feel the same and have only started improving in the last 2 weeks after trying Heather's ibs diet.
So, anyone else have a false positive? Anyone else added wheat back into their diet? I'm going super slow, to avoid giving my gut any surprises. - Dan
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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I know this was a subject other people had asked Heather about after a recent newsletter, so I thought I'd post what I'd learned.
I'm still eating wheat free 2 years after that blood work and endoscopy. But I went to a new GI, referred by "daliatree". This new GI told me he doesn't even run the tests that my previous GI said pointed to possible wheat intolerance because they are totally unreliable. The tests are called Gliaden AB IgA and Gliaden AB IgG and my numbers had been in the strong positive range.
He went on to show me that in the same lab report was a test for Transglutaminase AB (IgA) which he said is a much more reliable indicator of Celiac. My test for that was well within the negative range. My previous doc didn't point that test out to me at the time!
SO, what does this mean? Not too much since I already knew I didn't have celiac, but it does mean that its time for me to try adding wheat back to my diet and see how it goes. I'd put it off, bc I thought the blood tests showed that my system reacted negatively to wheat. I still may turn out to be wheat "intolerant" but there is no blood test proven to establish that according to this GI.
Dan
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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I just posted about this! I feel like I had a false positive as well. I had positive results a year ago, but didnt get better with the diet. my endoscopy was also negative. i JUST started eating wheat again and want to get re-tested to see what happens this week. After a year of being gluten free, it's been tough... I'm glad you posted-- now I know which blood test I REALLY need. I also had the ones that were not very conclusive. Thanks for your post!
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IBS-A
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Hi,
I would definitely look into this further, (I plan to.) Don't take my word for it, but you should certainly ask about this other test when you have bloodwork done. I think there are quite a few of us in this same wheat limbo due to those tests! I notice I don't feel great after wheat sometimes, but I can't tell if its a true reaction, if I'm making myself sick, or if its coincidence. I'm definitely not better overall for stopping wheat. I never did go all the way to GF. Good luck with your test
Dan
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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I am so glad I didn't schedule a biopsy!
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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I was had the gluten antibody test done, and like you, my gliadin numbers were sky high! But the Transglutaminase AB (IgA) was okay. I had an endoscopy done which came back normal....so I continued to eat gluten.
I still felt horrible so I went to another GI after I moved and he reran the gluten test. Again, the antibodies came back positive and the Transglutamine came back normal. He did an endoscopy which was again normal. I then had the blood test redone by the first GI doc and got the same positive results. So, I doubt I would have gotten 3 false positives!
I went on a totally gluten free diet for almost a year. The only change in my symptoms were going from chronic D to chronic C. So, in a way, the diet calmed the D down, but C stinks too! I still had the pain, cramps, gas, bloat...
So then my 2nd GI doc did another antibody test after I had been gluten free for 10 months. We wanted to see if they still came back positive even though I was eating Gluten Free. If they were again positive, we would have concluded that my body just produces antibodies to gluten.
Unfortunately, the results came back normal! After following a GF diet for 10 months, I had normal antibody levels....but still symptoms. 
My doctor told me to start eating gluten anyhow...to see how I reacted. This didn't make sense to me since my antibodies went back to normal after eating GF. Obviously my body didn't like the gluten....but why was I still in so much pain and constipated.
But, I am following orders and have introduced some gluten to my diet...oatmeal, oaty cereal, corn cereal with barley, spelt bread, wheat free (but not gluten free) Fig Newmans cookies, and occasionally some cereal that contains wheat. I am scared to go all out and eat the wheat...hoping that my antibodies were just caused by wheat and not all gluten.
Results thus far...I feel the same. Still crummy. So, GF didn't help, wheat free didn't help...nothing helped.
I now am going to a GI specialist at a University and he is concerned about the antibodies, but he said for now, he wants to address some other options/symptoms first.
I have no idea what to think of any of this. I'm scared to eat gluten because of my antibody tests, but also it is hard to eat GF and it didn't seem to help. So, what do I do? GF is expensive too! 7 dollars for 13 pieces of bread!
Please keep me updated on what you do....and how you feel. I would love to hear from people in the confusing situation!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Wasn't your doctor concerned? Aren't you concerned, LM?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Quote:
I think there are quite a few of us in this same wheat limbo due to those tests! I notice I don't feel great after wheat sometimes, but I can't tell if its a true reaction, if I'm making myself sick, or if its coincidence.
Exactly! Gluten limbo...and are we just really nervous about the wheat because of the antibody test?
Please, please keep me udated. What does your doctor think of all this? One doc told me I didn't have to eat GF, one did. I don't believe I have celiac, but I still don't know if I am gluten intolerant because the bloodwork came back positive, the Total GF diet didn't make me feel good, and my antibody test came back normal after eating GF.  I don't know which route to go!
What are you going to do to look into this further? How are you going to eat? Aren't you scared that if we don't eat GF we won't have a chance of feeling better? We can have IBS and Gluten Intolerance and if we eat GF it could still be the IBS that is causing the problems. If we eat for IBS and still eat gluten, are we sabatoging ourselves?
But I think I ate GF and IBS safe for a year....I tried to ...and still felt lousy....just C instead of D.
What should we do? How should we eat?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I delayed getting a biopsy because I didn't think my symptoms were corresponding to celiac. IBS runs in my family but not celiac. I was on antibiotics right then and wondered if that caused the false positive. Anyway I did some research into celiacs and went on the GF diet for 3 weeks. It didn't help at all and I knew the test was wrong. However years later, which was last year, I had another test which was conclusively negative.
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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