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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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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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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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
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~ Beth
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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
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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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Here's an article - I didn't read teh whole thing yet - which seems to back up what my doctor said about transglutiminate (sp?) tests being much more reliable than antigliadin tests. It says the antigliadin tests often show a false positive when there is intestinal inflamation due to other causes!
http://www.turner-white.com/pdf/hp_may03_celiac.pdf
I found it through this site which seems to be a celiac article link page..
http://brain.hastypastry.net/forums/showthread.php?t=2132
Fellow gluten limbo-ites - Let me know if you dig up anything else interesting.
Dan
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Well, to update you all: My family doctor was furious to learn that my biopsy was negative and the transglut. was also negative. There is no reason I should have been on a gluten free diet. Celiac does not run in my family and I did not get better AT ALL on the diet. He told me it's time to completely forget it and go back to a normal diet. I believe I will feel better being able to eat a bit of bread. Well, I already am. I met with my surgeon yesterday and its been 2 weeks since my gallbaldder surgery. There was horrible chronic inflamation there and he said he was glad it came out then. (Augie-- maybe it would be worth a shot!) I am still constipated, but after pain meds and one horrible bout of diarrea, thats to be expected. I'm back on Miralax and praying for some results! Anyway, thats my story. I don't know about IBS-- with the inflamation of the gallbaldder, there is a chance that was causing everything. SO I'll be careful, but we will see.... stupid gluten free life! I would LOVE to sue my GI doc that made me stick to this diet-- it was so expensive and he simply ignored me. oh well, i'm off to eat REAL cereal this morning!!
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IBS-A
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What made your doc take it out? Could he tell it was inflammed before he even took it out?
I don't have the vomitting that you did.
I am still confused about my diet. I don't know what to eat.
Let me know how the gluten containing diet goes over with you, okay?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hawkeye!!!
#219477 - 10/14/05 11:23 AM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Quote:
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?
Any suggestions?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Please help
#219479 - 10/14/05 11:29 AM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Hey guys and gals....I'm really confused about whether I should be eating gluten or not. I mean, I had the antibody test done 3 times and they all came back postive (not the one specific for celiac though). I doubt I would have 3 false positives over 2 years. But the GF diet didn't help me.
Further complicating this is the fact that when I had my antibodies retested after being on the GF diet, they were normal! 
I don't know if I should or should not be eating gluten or wheat free or normally? My docs are no help.
Any opinions from anyone---even without postitive antibodies--- can you guess share what you would do if you were me? Please?
The post above explains it all better. I'm just getting more and more confused. 
I know you guys aren't experts, but if you were in this situation, what would you do?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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~ Beth
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What happens when you eat gluten or wheat? Anything different than when you don't eat it?
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Augie,
So far I've eaten a few bites of wheat in the past few weeks. The truth is i"m as unsure as you are. It is possible that I am ( or We are ) wheat intolerant. That doesn't show up on any blood tests according to the doc I saw. It seeems like this is about as murky for dr.s as for us, or we'd have clearer guidelines to follow.
I'm going to experiment very slowly. Lets stay in touch about this though, I'd like to hear what you experience. - Dan
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If it was me I would start with gluten containing products that aren't straight wheat. Products that have small amounts of gluten could help test your reaction. I am only giving my opinion because I know you will not hold me to any responsibility and besides you don't feel good now as it is.
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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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Yes, that is what I've done. I eat spelt, barley, etc with no problems. SO now its on to tackling wheat and figuring out if I can handle it.
Dan
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Re: personally
#219557 - 10/15/05 06:17 AM
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Aly
Reged: 08/16/04
Posts: 669
Loc: Columbus, Ohio
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just an fyi-- i'm eating all of the wheat i want currently and I have never felt better... but with me, its probably b/c my gallbaldder was messing me up before... I even had real toast for breakfast and feel OK. I'm still constipated, but my doc never thought that was related to eating wheat... I started eating little bits, but finally said forget it and now I am happy as can be. I'm going to work today! I'm taking a lunch with a turkey bagel! It's sad that this is so exciting, but I really, for once, feel fine to leave my house:) Wish me luck all day!
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IBS-A
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I eat spelt bread (one piece white followed by one piece dark), dried cereals that contain oats, barley...
I still don't feel any different than when I ate GF, but I am now taking Acacia so that may be interfering with my experiment. That is a new factor in my diet. So, who knows if I would feel now feel better without the acacia or if I would have felt better eating GF but taking Acacia! Does that make sense?
What else confuses me is the fact that my antibodies tested positive 3 times! What are the odds of having 3 false positives? And after going GF for 10 months, my test came back normal. This makes me believe I should be avoiding gluten...but then I come back to it didn't seem to make me feel better...just more C instead of D.
I wish the doctors could give more definitive answeres about this!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Are you eating whole wheat breads or white breads? Hmmm, I just don't understand how doctors can take such a different stand on the gallbladder issue. I've asked 4 and none think it should come out...but you are feeling better with yours out!
Enjoy the wonders of wheat! And think of all the money you'll save on GF products.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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We can compare notes! It's nice to not have to be going through this alone Dan! Let's deinately keep each other updated on progress/symptoms, etc!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I sincerely appreciate hearing what others would do if they were in my shoes. Thanks for taking the time to do so and for caring! You have a big heart, Tamara! 
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~ Beth
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Re: personally
#219623 - 10/15/05 03:04 PM
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Aly
Reged: 08/16/04
Posts: 669
Loc: Columbus, Ohio
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My surgeon didn't even blink about taking it out. I met with him and he said "whats your med history" to which I replied " A LONG history of belly pain..." and we discussed it all. He said he can't promise to take all of my symptoms, but could help some. I gave it a shot and it worked. No one even warned me about NOT taking it out... so I was confused to hear about you! I guess everyone is different, and honestly--they aren't sure how bad i have IBS, if at all... so I'm in a different boat I guess. And yes, the $$ I'm saving is well worth it!
By the way, I'm eating white bread--whole grain is tough on normal people's belly, so I'm sticking with white for awhile... I'm so happy to eat all of this again-- I'm still being healthy, but the thought of going out to eat is so exciting. I am feeling like my life is back... so for me, it was well worth it. I am so glad no doc ever questioned it for me! Hang in there...it's bound to be figured out!
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IBS-A
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Augie,
I'm curious. Did you look to see if your blood test included a test for Transglutiminase? I could be wrong on the spelling and I"m not getting off the couch to check! Thats the test my doctor mentioned as being much more reliable.
Dan
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...but with 4 different doctors telling me "NO, don't take it out", I'm just so leery.
I wish I had gone to your doctor. Keep me updated on how you're doing! Oh, to be normal again. How do you determine if taking out the Gallbladder will help or if it is just plain ole IBS?
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~ Beth
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The thing that worries me is What else confuses me is the fact that my antibodies tested positive 3 times! What are the odds of having 3 false positives? And after going GF for 10 months, my test came back normal. This makes me believe I should be avoiding gluten...but then I come back to it didn't seem to make me feel better...just more C instead of D.
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~ Beth
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I feel horrible no matter what. But I never tried eating GF while taking Acacia. That could have been why I was so constipated on the GF diet. Plus, my doc said the GF diet tends to be constipating with all the rice products and flours.
I've recently added Acacia, so it's hard to tell if I'm hurting because of spelt and barley or because of the Acacia. I wish I would have tried Acacia on the GF diet. But I just restocked on loads of spelt bread and cannot throw it out to go GF again. I just can't do it!
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~ Beth
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I'm so sorry this is so tough on you! It doesn't seem fair... we seem to be in the same boat. I am glad my surgeon just popped my little gallbladder out so quickly... I can tell the difference already. I'm not 100% yet, but the days or hours I feel fine, I am really enjoying. Without a gallbladder, I am a bit off with my BMs. I was so constipated, then I was OK for a day or two, now I'm going all of the time (which is normal I guess). It's hard to know what to do b/c I am still taking my Miralax, but with the bile slowly releasing throughout the day, its suppose to be more like a laxative...so this is probably normal. Still, going to the bathroom alot with minimal cramping is still miles ahead of where I was...hang in there! I feel like you're my gallbladder/belly problem twin out there!!
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IBS-A
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Hawkeye
#233206 - 12/21/05 07:09 PM
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Augie
Reged: 10/27/04
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Yes I did. And it came back negative. Are you still experimenting with eating gluten? How are you feeling? Have you tried (gulp) wheat yet? I'm still stuck on oats,spelt, and barley but haven't been brave enough to try wheat yet.
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~ Beth
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Oh, I'm embarrassed to say, that i've been a real chicken. I have taken little nibbles of wheat, or a bite here and there but thats it. i've bought bagels - I miss them more than any other wheat based food - but I haven't actually eaten them! Oh, its hard bc my ibs is very obviously at least 50/50 psychological/physical so its hard when I have so much panic and compulsive thoughts about it, to rev myself up to take a chance. Also I haven't been feeling all that well, mostly due to exhaustion of working and parenting. Still, I eat plenty of spelt with no ill effects and I've got to just give it a try soon. I'm on vacation now, maybe i"ll buy a bagel tomorrow - and maybe I'll even eat some of it!!!
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