My Blood Tests Were Very Positive But My Biopsy Was Negative

[becca42]

Hi, I am new. I am confused. I had the celiac screening test in back in March. All 3 tests came back positive; tTG ab, IgA = 48.3, Gliadin Peptide Ab, IgG = 50.6, Gliadin Peptide Ab, IgA = 121.0 (for all the tests >25 means positive0. My doctor said there was greater that 90% chance I have celiacs.

I had the endoscopy in April and the results came back negative for celiacs. I did NOT stop gluten before the biopsy.

The gastroenterologist sent me the results, but did not explain anything to me. They said there was no need for follow up and to continue with the gluten free diet. I went to my regular Doctor, he was surprised and couldn't explain it either.

How could my numbers be so high without having celiacs? Am I allergic to gluten or do I have gluten sensitivity? What is the difference?

I would appreciate any advice. Thank you

[kareng]

Possible the biopsies missed the bad spots. if 25% of your small intestine is " bad" you would feel awful. Every biopsy he takes has a 1 in 4 chance of getting a bad spot. If he did 2 biopsies, he probably missed it.

Get a copy of the procedure report, blood tests and pathology ( biopsy) report. Read them yourself. Sometimes docs don't know what they are reading. Also, perhaps your regular doc should call the GI and get some info?

[IrishHeart]

A positive blood test is positive for celiac.

As Karen says, the biopsy could be wrong or you just have patchy erosion at this point and he missed it.

Your doctor is partly correct--you should be gluten free, but there is always a need for follow up care.

You need lab work to make sure you do not have any vitamin deficiencies for starters.

What the hell is wrong with your GI doctor? You don't just dismiss a patient with that insufficient info.

Start reading about Celiac yourself so you can know what you are dealing with.

For starters, it is not a "gluten allergy", hon----it's an autoimmune disease. Not an allergy.

Try to find a doctor who knows what the hell he is talking about.

call the local celiac support group and see which MD is on their advisory board. They can help you find a good celiac-savvy doc.

Start reading about celiac here

Open Original Shared Link

and search celiac.com for more help.

I'll start you off:

[Cara in Boston]

I too had positive blood tests and negative biopsy. I had tons of symptoms (for 5 years) and all seem to go away on the gluten free diet. I was "technically" diagnosed with gluten intolerance.

Don't let your negative biopsy be "permission" to cheat on the diet. You very likely have celiac disease, it just wasn't found (maybe damage missed, maybe not enough damage yet, who knows?)

Also, everyone in your family should be tested (regardless of symptoms) as it is inherited. (Again, don't dismiss this important step just because your biopsy was negative.) My 7 year old son was diagnosed with celiac disease (biopsy) and had very few (almost none) symptoms.

Cara

[Skylark]

You are what celiac experts call latent celiac. You are somewhere in the process of developing full-blown celiac disease and the only way to reverse it is the diet.

People with positive bloodwork on highly specific tests (your combo of TTG IgA and gliadin peptide IgG is highly specific) who elected to keep eating were followed in a study and most went on to develop positive biopsies during the study. There was also a study where blood+/biopsy- people were found to have the same metabolic markers as blood+/biopsy+ celiacs, showing that once you are blood+, your metabolism is messed up even without the positive biopsy.

As other folks have pointed out, damage can be patchy and many doctors simply do not take enough biopsies to have a good chance of hitting a spot with damage.

If I were you, I'd consider myself celiac, go gluten free, and be really grateful that at least the bloodwork was positive. People with latent celiac almost always feel better gluten-free. Get your doctor to rerun your celiac panel in six months. The antibodies should be dropping if not gone from the gluten-free diet, which is more proof of celiac disease.

[1974girl]

My daughters was only in the duadenal bulb. All other biopsies showed normal. I wonder how many biopsies were taken and from where.

[nora-n]

maybe they by mistake switched the biopsy samples.....because some of these blood tests are very specific for celiac.

[MitziG]

If you had only 1 of those tests be strongly positive, it is pretty much guaranteed you have celiac. To have all of them be so means there is no question whatsoever. Just doesn't happen.

As to your biopsy- a few possibilities:

You have latent celiac, as another poster mentioned

Your doctor took an insufficient number of biopsies

Your doctor did not happen to biopsy the correct spot (celiac is often patchy, hence the need for multiple biopsies)

The person who read the biopsies was inexperienced- there is a great deal of skill required to correctly interpret subtle damage- and the pathologist who did yours may not have had it

Or...the lab screwed up. Always a possibility for human error.

Regardless- you have celiac dear. Because it is an autoimmune disorder, it must be taken seriously. If you do not strictly adhere to a gluten free diet you WILL develop additional ai disorders (hashimotos, sjorens, lupus, multiple sclerosis, rheumatoid arthritis...etc...) you also will run an increased risk of intestinal lymphoma.

And you will feel like total crap.

The good news is- stick to the diet, don't cheat, and hopefully you will avoid all of that.

Also may be wise to get a dr with a brain

[becca42]

Possible the biopsies missed the bad spots. if 25% of your small intestine is " bad" you would feel awful. Every biopsy he takes has a 1 in 4 chance of getting a bad spot. If he did 2 biopsies, he probably missed it.

Get a copy of the procedure report, blood tests and pathology ( biopsy) report. Read them yourself. Sometimes docs don't know what they are reading. Also, perhaps your regular doc should call the GI and get some info?

Thank you. I have an appointment to get the pathology report.

[becca42]

A positive blood test is positive for celiac.

As Karen says, the biopsy could be wrong or you just have patchy erosion at this point and he missed it.

Your doctor is partly correct--you should be gluten free, but there is always a need for follow up care.

You need lab work to make sure you do not have any vitamin deficiencies for starters.

What the hell is wrong with your GI doctor? You don't just dismiss a patient with that insufficient info.

Start reading about Celiac yourself so you can know what you are dealing with.

For starters, it is not a "gluten allergy", hon----it's an autoimmune disease. Not an allergy.

Try to find a doctor who knows what the hell he is talking about.

call the local celiac support group and see which MD is on their advisory board. They can help you find a good celiac-savvy doc.

Start reading about celiac here

Open Original Shared Link

and search celiac.com for more help.

I'll start you off:

Thank you

[becca42]

Thanks everyone!

[Malisa1]

Hi, I am new. I am confused. I had the celiac screening test in back in March. All 3 tests came back positive; tTG ab, IgA = 48.3, Gliadin Peptide Ab, IgG = 50.6, Gliadin Peptide Ab, IgA = 121.0 (for all the tests >25 means positive0. My doctor said there was greater that 90% chance I have celiacs.

I had the endoscopy in April and the results came back negative for celiacs. I did NOT stop gluten before the biopsy.

The gastroenterologist sent me the results, but did not explain anything to me. They said there was no need for follow up and to continue with the gluten free diet. I went to my regular Doctor, he was surprised and couldn't explain it either.

How could my numbers be so high without having celiacs? Am I allergic to gluten or do I have gluten sensitivity? What is the difference?

I would appreciate any advice. Thank you

From all of the research I have done, it is only Celiac Disease if the villi in your small intestine are damaged. A positive blood test would still mean you are gluten intolerant, though. I also learned that untreated gluten intolerance/sensitivity (gluten free diet) can result in full blown Celiac Disease (damage to the villi in your intestine). You must not be to the point yet where there is intestinal damage. Also, sometimes, there is only minor damage to the villi and the biopsy catches a still healthy part. Perhaps being very strict with a gluten free diet can prevent this damage. I hope this has explained why your biopsy came back negative and blood test positive. If this has been answered below, I apologize. Short on time.

[florentine]

Great info! Both my daughter and I had a positive blood test, but no biopsy yet. I was wondering what was the outcome if the biopsy would be negative.

[kareng]

From all of the research I have done, it is only Celiac Disease if the villi in your small intestine are damaged. A positive blood test would still mean you are gluten intolerant, though. I also learned that untreated gluten intolerance/sensitivity (gluten free diet) can result in full blown Celiac Disease (damage to the villi in your intestine). You must not be to the point yet where there is intestinal damage. Also, sometimes, there is only minor damage to the villi and the biopsy catches a still healthy part. Perhaps being very strict with a gluten free diet can prevent this damage. I hope this has explained why your biopsy came back negative and blood test positive. If this has been answered below, I apologize. Short on time.

Great info! Both my daughter and I had a positive blood test, but no biopsy yet. I was wondering what was the outcome if the biopsy would be negative.

Just a heads up a this was posted 2 years ago. A positive Celiac blood test does not indicate non- Celiac gluten intolerance. There aren't any medically reliable blood tests for that. Most likely what happens is a doctor doesn't so enough biopsied to find the damage. Encourage your doctor to do at least 6 - more is better. Also, continue to eat gluten until you get your tests finished.