Confused by result

[persianp]

Hi,

I haver been having ongoing symptoms, apparently connected with celiac as my doctor requested a blood test to check for it. My results came back at 0.17. The receptionist called to advise me of this but said they are short staffed so a doctor can't discuss what they mean with me until next week. I am assuming they aren't normal as my doctors surgery doesn't make follow up appointments if results are normal. I'm not sure the name of the test they carried out, the doctor just said it was to test for celiac, the receptionist mentioned IGA but she said she didn't know the name of the test being carried out.

Can anyone interpret what 0.17 might mean please?

Thanks

[trents]

We can't help you with that result without more information. Do you have online access to your medical records? We would need to know the name of the specific test as well as the reference range for negative vs. positive used by the lab that did the analysis. And there is more than one blood test that can be run for celiac disease. The most common one is the tTG-IGA. Here is an overview: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

By chance, had you already started the gluten free diet before the test was administered. If so, that can yield a false negative.

Also, you may have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The symptoms are largely the same but there is no test for NCGS. Celiac disease must first be ruled out. The antidote for both is the same. Total abstinence from gluten for life.

Did your doctor mention doing an endoscopy with biopsy to check for damage to the villi that line the small bowel? That is the other testing method for celiac disease.

Please describe for us your symptoms in more detail. Is any of your other blood work abnormal, such as iron deficiency anemia?

Edited April 13, 2022 by trents

[persianp]

1 hour ago, trents said:

We can't help you with that result without more information. Do you have online access to your medical records? We would need to know the name of the specific test as well as the reference range for negative vs. positive used by the lab that did the analysis. And there is more than one blood test that can be run for celiac disease. The most common one is the tTG-IGA. Here is an overview: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

By chance, had you already started the gluten free diet before the test was administered. If so, that can yield a false negative.

Also, you may have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The symptoms are largely the same but there is no test for NCGS. Celiac disease must first be ruled out. The antidote for both is the same. Total abstinence from gluten for life.

Did your doctor mention doing an endoscopy with biopsy to check for damage to the villi that line the small bowel? That is the other testing method for celiac disease.

Please describe for us your symptoms in more detail. Is any of your other blood work abnormal, such as iron deficiency anemia?

Hi Trents, thanks so much for your reply.

Unfortunately I don't have access to medical records online yet, and the receptionist wasn't very helpful. I kept asking which specific test it was but to no avail.

I haven't stared any gluten free diet yet no. My symptoms are constipation, abdominal pain, fatigue, nausea, hard to lose wight, feeling of fullness under left rib. I am currently weaning my baby of the breast (9 months post partum) so I thought my symptoms could be related to that (hormones etc).

I had full bloods done a couple of weeks ago too and all they showed were slightly low levels of protein.

The doctor has ordered a CT scan which is on Friday. To be honest I think she was just wanting to rule celiac out, I didn't expect I'd have it, but It's the fact that they want to discuss the results with me that's cause for concern. The only thing they were testing for on this blood test was celiac.

I suppose I'll just have to wait until I can get in with the doctor. Thanks for your help

[trents]

More than likely, your doctor ordered the tTG-IGA antibody test if he/she ordered only one. It is considered to be the one test that combines good sensitivity with good specificity. But sometimes it will miss people who actually do have celiac disease so there is value of ordering other tests in that spectrum.

From what little information there is to work with at this point it might be wise to consider trying a gluten free diet for several weeks to test the waters on your own. If eliminating gluten makes improvement in your symptoms then it would be safe to conclude that you either have celiac disease or NCGS.

There is a real learning curve when it comes to eating truly gluten free as most people have no idea how gluten-containing grain products are tucked away in the food supply, even in pills and supplements. It's more than just a matter of cutting out bread and pasta. For instance, most soy sauce has wheat as a main ingredient. Most canned soup products will contain wheat, even tomato soup! Wheat starch is a cheap thickener. It can be in sauces and condiments. This might help:

 

[persianp]

On 4/13/2022 at 4:46 PM, trents said:

More than likely, your doctor ordered the tTG-IGA antibody test if he/she ordered only one. It is considered to be the one test that combines good sensitivity with good specificity. But sometimes it will miss people who actually do have celiac disease so there is value of ordering other tests in that spectrum.

From what little information there is to work with at this point it might be wise to consider trying a gluten free diet for several weeks to test the waters on your own. If eliminating gluten makes improvement in your symptoms then it would be safe to conclude that you either have celiac disease or NCGS.

There is a real learning curve when it comes to eating truly gluten free as most people have no idea how gluten-containing grain products are tucked away in the food supply, even in pills and supplements. It's more than just a matter of cutting out bread and pasta. For instance, most soy sauce has wheat as a main ingredient. Most canned soup products will contain wheat, even tomato soup! Wheat starch is a cheap thickener. It can be in sauces and condiments. This might help:

 

Hi again, so my doctor advised the test was inconclusive as I don't make IGA antibodies. She has referred me to a gastroenterologist. Does this seem about right?

[trents]

If you will review the information on serum testing for celiac disease that I provided in my first response to your original post you will see that the tTG-IGA test can be result in a false negative when total IGA scores are low. That is the value of running a full celiac panel and not just the tTG-IGA. Again, since you are unable to provide any specifics about what test was actually run and what the actual numbers were I'm just speculating here. Can you ask for a hard copy?

[Aurélie]

21 hours ago, persianp said:

Hi again, so my doctor advised the test was inconclusive as I don't make IGA antibodies. She has referred me to a gastroenterologist. Does this seem about right?

Hey!

That sounds like me. I have low IgA and don't make enough antibodies to reflect the internal damage that celiac is causing. DEFINITELY see a GI. My GI told me I can't do blood tests for celiac and have to do the endoscopy/biopsies. I'm now on a yearly schedule of doing those.

Also, tale of caution, always get the biopsy. My first endoscopy came back normal, but the biopsy showed severe damage and lots of bad T-cells.

The endoscopy and biopsy is a hassle, but because my doctor initially thought I had refactory sprue (a possible life threatening condition from untreated celiac disease), I will gladly do the biopsies to prevent major complications and possibly save my life. I am mainly asymptomatic, so checking on damage is VERY important for me.

(I learned I was getting cross-contamination and my thyroid medicine probably had gluten in it. I had to go from eating strict, to SEVERELY strict, like can't even eat at my parents' house)

[trents]

persianp,

If you mean you total IGA when you say your doctor said you aren't making any IGA antibodies then that certainly explains why the tTG-IGA is negative. The next stage of diagnosis will likely be an endoscopy/biopsy. I'm guessing the GI doc will want to do that.