Confused- Biopsy Result Normal?

[mangomagic]

My blood result showed that I had as my specialist explained 'impressively high' coeliac antibodies (IGA)- 200 u/ml, and also tested postive to IGA. The specialist said given my levels it would be pretty unlikely that the biopsy wouldn't be positive for coeliac disease. Although he did say that given my age (29) that my intestine is likely to not be very damaged. In between seeing my doctor and my specialist I went gluten free as recommended by my doctor, but that was less than a week and then I continued to eat gluten for a few more weeks until the biopsy, but the biopsy shows a normal intestine.

I'm confused! Since the biopsy I started eating gluten free and have been feeling a lot better, also I accidentally ate some gluten at a restaurant and noticed the difference straight away: bloating etc. Does this mean that I am not celiac? I've got another 3 weeks before I see my specialist.

[T.H.]

From what I understand, there is a chance you can still be biopsy negative but celiac positive. I don't remember the details - maybe that some people have damage that is not consistent in all areas? - just that a few people here have had that experience.

However, my own thoughts?

Whatever the diagnosis, if not eating gluten makes you feel better, trust what you're feeling. When it comes to allergies and sensitivities, the docs are still working on how everything effects us.

I know my weird one was lemons! I'd had this horrible ear ache off and on for years now. No one could diagnose it other than the never-stated 'you're a hypochondriac.' After going gluten free and doing a food log to help find my other allergies, we found out that I have an ear ache after I eat lemons! It doesn't show up on allergy tests as anything I have problems with, but I've eaten things I thought were free of lemon and actually had it, and I get a nasty earache every time.

So even though the tests can't explain why, I've chosen to stay away from lemons. Depending on your doc, you may be in the same boat with gluten, yes? I'd do a food log, just in case, though. Possibly there is something you've been avoiding along with the gluten, and that's what's making you feel better? A food log might be a good way to make sure it's the lack of gluten that's affecting you positively, if it seems the doctor is going to okay gluten.

  On 2/8/2010 at 3:45 AM, mangomagic said:

My blood result showed that I had as my specialist explained 'impressively high' coeliac antibodies (IGA)- 200 u/ml, and also tested postive to IGA. The specialist said given my levels it would be pretty unlikely that the biopsy wouldn't be positive for coeliac disease. Although he did say that given my age (29) that my intestine is likely to not be very damaged. In between seeing my doctor and my specialist I went gluten free as recommended by my doctor, but that was less than a week and then I continued to eat gluten for a few more weeks until the biopsy, but the biopsy shows a normal intestine.

I'm confused! Since the biopsy I started eating gluten free and have been feeling a lot better, also I accidentally ate some gluten at a restaurant and noticed the difference straight away: bloating etc. Does this mean that I am not celiac? I've got another 3 weeks before I see my specialist.

[mangomagic]

  On 2/8/2010 at 1:05 PM, T.H. said:

From what I understand, there is a chance you can still be biopsy negative but celiac positive. I don't remember the details - maybe that some people have damage that is not consistent in all areas? - just that a few people here have had that experience.

However, my own thoughts?

Whatever the diagnosis, if not eating gluten makes you feel better, trust what you're feeling. When it comes to allergies and sensitivities, the docs are still working on how everything effects us.

I know my weird one was lemons! I'd had this horrible ear ache off and on for years now. No one could diagnose it other than the never-stated 'you're a hypochondriac.' After going gluten free and doing a food log to help find my other allergies, we found out that I have an ear ache after I eat lemons! It doesn't show up on allergy tests as anything I have problems with, but I've eaten things I thought were free of lemon and actually had it, and I get a nasty earache every time.

So even though the tests can't explain why, I've chosen to stay away from lemons. Depending on your doc, you may be in the same boat with gluten, yes? I'd do a food log, just in case, though. Possibly there is something you've been avoiding along with the gluten, and that's what's making you feel better? A food log might be a good way to make sure it's the lack of gluten that's affecting you positively, if it seems the doctor is going to okay gluten.

Maybe I should try eating gluten free for a month and then try gluten just to test it out, what do you think?

[Raleigh333]

  On 2/8/2010 at 3:45 AM, mangomagic said:

My blood result showed that I had as my specialist explained 'impressively high' coeliac antibodies (IGA)- 200 u/ml, and also tested postive to IGA. The specialist said given my levels it would be pretty unlikely that the biopsy wouldn't be positive for coeliac disease. Although he did say that given my age (29) that my intestine is likely to not be very damaged. In between seeing my doctor and my specialist I went gluten free as recommended by my doctor, but that was less than a week and then I continued to eat gluten for a few more weeks until the biopsy, but the biopsy shows a normal intestine.

I'm confused! Since the biopsy I started eating gluten free and have been feeling a lot better, also I accidentally ate some gluten at a restaurant and noticed the difference straight away: bloating etc. Does this mean that I am not celiac? I've got another 3 weeks before I see my specialist.

Hello! I can definitely relate to where you are coming from. 2-3 years ago I had positive blood work (not sure which test) but a normal biopsy when I had the endoscopy done. Wasn't happy with the gray area the doctor left me in. Read that you can have celiacs and just not have the damage to your intestines YET. Got a second opinion last month-positive blood work came back again (tissue transglutaminase, reticulin, and gliadin antibodies). Had an endoscopy 2/5/10 and woke up to pictures of my abnormal duodenum...and i'm 24. I was really shocked to see the damage...kind of scary. I thought it would be solely microscopic changes. He biopsied the abnormal sections of my duodenum, and said if the last doctor took a biopsy of a normal looking section, then yes, those sections would come back normal.

Celiac's is a spotty disease and sometimes damage occurs past the site that doctors go to when they do the endoscopy. I believe I had a normal IGA-cause i called to get the bloodwork in January and said I did not have Celiacs-but that was the only test result that had come in. BUT then the panel came back (with the elevated antibodies I listed above) and they called me back and said actually I DO have it. I was to change my diet immediately and ate gluten free for two weeks before my endoscopy. My new doctor is wonderful, and if I understand correctly said that if the tTG (tissue transglutaminase) is positive then you have celiacs. So see if you had that test done. I go back next week thursday to follow up and i'd like to know the exact levels so I'll share if they are helpful.

[mangomagic]

Raleigh, Thank you for sharing! was there much time between the two biopsies?

The high blood test 200url level I mentioned was tissue transglutaminase IgA.If I don't have it, then why my levels be so high? It just doesn't make sense.

I'm seeing my specialist in a week and will be interested to see what he says. I'm going to keep eating gluten free until then.

[Raleigh333]

  On 2/13/2010 at 1:40 PM, mangomagic said:

Raleigh, Thank you for sharing! was there much time between the two biopsies?

The high blood test 200url level I mentioned was tissue transglutaminase IgA.If I don't have it, then why my levels be so high? It just doesn't make sense.

I'm seeing my specialist in a week and will be interested to see what he says. I'm going to keep eating gluten free until then.

About two years from the normal biopsy to the abnormal biopsy...I should have gotten a second opinion sooner so my advice to you is don't let this go! Normal biopsy in the spring of 2008. Doctor said no celiacs-and that's just I had a normal biopsy...but everything i've read said there just isn't damage yet. Feb 5 2010-abnormal biopsy...you can see the damage...i thought it would be solely microscopic. I've been a celiac, but nothing further was done for treatment the first time because the biopsy was normal. My new doctor said if you have positive tissue transglutaminase then you have celiacs...so good luck and let me know how this goes!

[mangomagic]

Hi everyone, just wanted to let you know that I went to see a specialist today and he recommend that I go gluten free for 6 more weeks and then get the gene test and coeliac blood tests again to see if my result goes down.

[alpha752]

  On 2/22/2010 at 3:55 AM, mangomagic said:

Hi everyone, just wanted to let you know that I went to see a specialist today and he recommend that I go gluten free for 6 more weeks and then get the gene test and coeliac blood tests again to see if my result goes down.

I had a similar situation with my doctor. My family doc ran bloodwork based on my symptoms (standard celiac stuff but I didnt know it at the time). Blookwork came back showing celiacs, and he sent me to a Gastro. The Gastro did an endoscopy and biopsy and found no signs of celiacs. He went in and repeated the endoscopy going further down the small intestine and found very very little sign, almost not even there. He also did genetic testing and with that diagnosed me as celiac. Im 28.