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Lab Test For Celiac

pixiegirl

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pixiegirl Enthusiast
pixiegirl
Posted

I've been on this list a few years, I have celiac disease. My mom has felt for some time now that she has it too (or some sort of issue with gluten). However she is still having GI issues and has been going to her doctor. He ran blood tests for Celiac (I think 4 of them) and they all came back negative. HOWEVER, my mom has not eaten any gluten for at least a year. I told her that the tests are not even close to accurate if she has not been eating any gluten and she asked her doctor about this. His answer was you can NOT have celiac disease, the results of these tests say so.

She told him that I told her that she has to be eating gluten for the tests to be accurate and he said hogwash. She said, my daughter is sure of it, that I had read it on the internet. He made a comment about how not much on the internet is true. Sigh. But he did say show me where, on a reliable web site it says that.

So my question is, does anyone know of a place on the internet that I CAN show him that the tests won't be accurate unless she is eating gluten? I've been searching but most of what I've found is written by regular people not on medical web sites.

Any help would be greatly appreciated.

Susan

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dally099 Contributor
dally099
Posted

hi there, i would say hogwash to the doctor, absolutley if shes been gluten free for a year blood work is going to come back negative. anyone here will tell you the same thing.

pixiegirl Enthusiast
pixiegirl
Posted
  • Author

Yes I understand that but my mother is 80 and was brought up to believe in her doctors, so what I am looking for is something from a website that says you have to be eating gluten for the test to be accurate so I can show her and her stupid doctor.

Susan

jerseyangel Proficient
jerseyangel
Posted

Hi Susan :)

Your mom's doctor is woefully ill informed.

Can you get your hands on a copy of Dr. Green's book--"Celiac Disease--A Hidden Epidemic"?

On page 52, he states:

"A key consideration for all of the tests described is whether the patient has been consuming gluten before being tested. Results of all the tests will return to normal on a gluten free diet."

He then goes on to describe the gluten challenge, which he states "involves a biopsy, not blood tests, after a period of eating gluten".

Phyllis28 Apprentice
Phyllis28
Posted

I found to following:

Open Original Shared Link

It might help.

Calle Rookie
Calle
Posted
Hi Susan :)

Your mom's doctor is woefully ill informed.

Can you get your hands on a copy of Dr. Green's book--"Celiac Disease--A Hidden Epidemic"?

On page 52, he states:

"A key consideration for all of the tests described is whether the patient has been consuming gluten before being tested. Results of all the tests will return to normal on a gluten free diet."

He then goes on to describe the gluten challenge, which he states "involves a biopsy, not blood tests, after a period of eating gluten".

I am reading Dr. Green's book now and have read other books besides doing research on the internet. I was diagnosed through Enterolab like several others on this board. I have fired many GI's in my area and was not going to do anymore invasive tests like the biopsy. I've been through enough over the past 25 years! The way I understand it is if you take the blood tests they are not accurate because if you do not have any damage in the small intestine, which some Celiac people do not, then the tests are a false negative. Not all Celiac's have damage in the small intestine, but that doesn't mean they don't have the disease. Also, on the biopsy's, if the doctor doesn't get the biopsy of the tissue where the damage is at then that will also come back negative and once again it doesn't necessarily mean that you don't have it. This is how I understand it and I don't know if that is correct or not.

Calle

Phyllis28 Apprentice
Phyllis28
Posted

I did a little more research. The New England Journal of Medicine has articles of Celiac but access is limited to a list or table of contents unless you are willing to pay for the article. I assume other promanent medical journals do the same thing. You might consider getting the list of articles and heading for the nearest library that carries medical journals.

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aikiducky Apprentice
aikiducky
Posted

Open Original Shared Link

I hope the link works, this is the NIH consensus statement on Celiac disease, you can't get much more official than that, and it clearly states that all testing should be done while the patient is still consuming gluten. Hope this helps.

Pauliina

happygirl Collaborator
happygirl
Posted

Wow, it amazes me that drs are so misinformed.

Amazing because the tests measure an antibody response to gluten, and those who are Celiacs, once on a strict/maintained diet, return to "normal" levels (i.e., don't look like a Celiac anymore) because there is no gluten to react to.

"A gluten-free diet should not be started until all diagnostic tests are completed, as the withdrawal of gluten can change test results." Open Original Shared Link (again, Dr. Green)

Susan, good to see you on here again :)

pixiegirl Enthusiast
pixiegirl
Posted
  • Author

Thanks so much! Yeah this doctor use to be MY doctor but I changed after fighting with him for years about what was wrong with me. But my mom thinks he's the best - ugh!

Also thanks Happy girl for remembering me, I've been so busy lately I haven't posted but I do come back and read posts now and then!

Susan

sneezydiva Apprentice
sneezydiva
Posted

The Mayo Clinic info on Celiac says a gluten-free diet can cause blood tests and biopsies to appear normal. That is a site that most doctors would consider reliable.

Open Original Shared Link

Under Screening and Diagnosis--last paragraph.

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