LymeNet Flash: celiac disease testing? Another ? too

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Posted by Nal (Member # 6801) on :

Do any of you know the best type of lab test for celiac disease? Needs to be something that can be done in a regular laboratory (so insurance will cover it). I had a standard test (I think it was a gluten test) but that was it. I want to know if there is more extensive testing available.

Last. My GI dr found non erosive gastritis in my stomach. Said my intestines looked completely normal (no redness or anything) along with the colon area-yep scoped there too! Anyone found anything that really helps aleviate the gastritis if not cure it all together? Im already on acid blockers.

Ok, Ill quit bother all of you again for a while.

Thanks.

Nancy

Posted by snowboarder (Member # 6346) on :

Hi Nal,

Two years ago my testing was done through Quest labs and negative of course. My DO said she wanted to do blood work to see if I'm allergic to wheat and it came back positive.

For the last three years I've followed a gluten free diet being fairly strict and it's helped a lot. Lately though I've had company and didn't do so well and am definitely noticing a difference. Tomorrow back on the strict diet.

I know I asked you this before but have you followed a gluten free diet and if so what were the results?

Posted by Lyddie on :

Go to www.celiac.com for information. There are 4 blood tests done (as I remember). You can also have genetic testing (HLA typing) which helps in diagnosis. Finally an endoscopy can be done and a biopsy.

Diagnosis of celiac can take years. it is not as cut and dried as some MD's like to say. The celiac.com site can explain this or I will in the am (sleepy!).

Posted by breathwork (Member # 567) on :

celiac disease is an autoimmune disease...meaning your body makes antibodies to the lining of your small intestine.

Gluten intolerance can mean celiac, but it can also imply that your body is simply intolerant of gluten...not autoimmune...so the endoscopy can be negative, the anitbody titres can be negative, yet you may be intolerant of wheat...

Wheat allergy is another form of gluten intolerance....

The answer to all three is a gluten free diet...

It sure has changed my life for the better....

Posted by Nal (Member # 6801) on :

Thanks. I looked at the information but I couldn't find where it gave to names of specific blood tests-just said IgG and IgM antiboties.

Nancy

[This message has been edited by Nal (edited 25 July 2005).]

Posted by Lyddie on :

At celiac.com, under FAQ's, "how is celiac diagnosed" you will find info on this as follows:

1) first step, antibody tests: transglutaminase antibody test is not mentioned for some reason but is mentioned on other sites

-endomysial antibodies
-reticulin atibodies (IgA)
-gliadin antibodies (IgG and IgA)

If all 3 are positive, tentative diagnosis of celiac, if all 3 negative, then result is negative. Must be on gluten for a period of time for these tests to be accurate.

2) second diagnostic step is biopsy

3) 3rd step is going off gluten for 6 months, improvement again confirms possibility of celiac.

4) Biopsy to confirm healing of villi.

5) Some doctors do this, some say it is unnecessary: Go back on gluten for 6 months, then biopsy again. If damage recurs on gluten, then celiac is confirmed and you go off gluten for the rest of your life.

Many sufferers cannot even go back on gluten for the first step,let alone the 4th, because gluten causes them so much suffering. These folks opt to go off gluten w/out diagnosis, but never get an offical diagnosis. Many professionals warn it takes a lot of motivation to stay gluten-free for your life and that even small mistakes can cause adverse health effects (including cancer). So they recommend getting a diagnosis. But it is very difficult.

Genetic testing is also used. I forget but it might be HLA-DR2 is one of the two main types that ar eprone to celiac. You can also look this info up if you type in "celiac HLA types" on Google or Yahoo.

One word of warning: A person such as my daughter , who also has type 1 diabetes prone to celiac) and is clearly having improvement on gluten, probably does not have celiac. If we had not had the biopsy done and all the tests, she would spend the rest o fher life off gluten unecessarily. Doctors are telling us she will need to avoidit for a year or so, to help her "leaky "gut lining heal from yeast, but should be able to eat it in the future.

We hurried to have the tests done because she wanted to go off gluten for relief, and if she did that, there would be no way to test reliably without going back on gluten for 6+months, which seemed like a horrible idea.

Posted by Nal (Member # 6801) on :

Lyddie,

Thanks for the info! Could you possibly email me sometime? Id like to find out some more info from you if possible. My email address is viewable. Thanks

Nancy

quote:
Originally posted by Lyddie:
At celiac.com, under FAQ's, "how is celiac diagnosed" you will find info on this as follows:
1) first step, antibody tests: transglutaminase antibody test is not mentioned for some reason but is mentioned on other sites
-endomysial antibodies
-reticulin atibodies (IgA)
-gliadin antibodies (IgG and IgA)
If all 3 are positive, tentative diagnosis of celiac, if all 3 negative, then result is negative. Must be on gluten for a period of time for these tests to be accurate.

2) second diagnostic step is biopsy
3) 3rd step is going off gluten for 6 months, improvement again confirms possibility of celiac.
4) Biopsy to confirm healing of villi.
5) Some doctors do this, some say it is unnecessary: Go back on gluten for 6 months, then biopsy again. If damage recurs on gluten, then celiac is confirmed and you go off gluten for the rest of your life.
Many sufferers cannot even go back on gluten for the first step,let alone the 4th, because gluten causes them so much suffering. These folks opt to go off gluten w/out diagnosis, but never get an offical diagnosis. Many professionals warn it takes a lot of motivation to stay gluten-free for your life and that even small mistakes can cause adverse health effects (including cancer). So they recommend getting a diagnosis. But it is very difficult.
Genetic testing is also used. I forget but it might be HLA-DR2 is one of the two main types that ar eprone to celiac. You can also look this info up if you type in "celiac HLA types" on Google or Yahoo.
One word of warning: A person such as my daughter , who also has type 1 diabetes prone to celiac) and is clearly having improvement on gluten, probably does not have celiac. If we had not had the biopsy done and all the tests, she would spend the rest o fher life off gluten unecessarily. Doctors are telling us she will need to avoidit for a year or so, to help her "leaky "gut lining heal from yeast, but should be able to eat it in the future.
We hurried to have the tests done because she wanted to go off gluten for relief, and if she did that, there would be no way to test reliably without going back on gluten for 6+months, which seemed like a horrible idea.

Posted by earthgirl (Member # 7314) on :

i had a negative blood test, but then tested positive with a stool test through EnteroLab. Insurance covered it as well.
-s.

Posted by hiker53 (Member # 6046) on :

Enterolab is in the process of applying for a patent on their test. They test for certain antibodies against gluten. However, someone may make antibodies against gluten and not have celiac.

When lyme gets fixed those antibodies can return to normal levels and a person is not gluten sensitive their whole life.

The blood tests and endoscope are more reliable for a celiac diagnosis.

Posted by Nal (Member # 6801) on :

I had the endoscope done. It showed gastritis in the stomach (non erosive). It showed that the opening to the small intestine was very normal-no redness or inflamation noted. I also had a colonoscopy done and it looked very normal-no redness or irritations noted anywhere.

Would those areas show inflammation if I had celiacs or something else going on?

Nancy