Unsure About Testing

[hchenery]

Hello everyone, i'd like some advice please on testing for celiac/gluten intolerance. I had a blood test done at the GP before Christmas, which came back with one of the markers a little raised. My GP told me that usually positive results for celiac disease would come back with both markers significantly raised and so they were unsure what this meant. After Christmas I felt so awful I decided to just try not eating gluten and see how I felt - not amazing but a whole lot better than all of last year. My GP has now told me that there is another blood test that can be done that will conclusively tell us if I have celiac disease or not (I don't think I do, more likely a gluten intolerance if anything).

 

I guess my question is if I decide to get the test done do I need to start eating gluten again for the test results to be accurate? If so, how long should I do this for before doing the blood test.

 

I have felt horrible for the past 18 months and been getting worse and worse during that time. My symptoms are different to most people in that they are mainly neurological: migraines, dizziness, foggy head, weak/achey feeling in arm and leg on one side. Also bloating most days but no other significant digestive issues. I have been referred to a neurologist who has diagnosed a form of migraine but it doesn't sit right with me as the symptoms are always there 24/7. I've tried two lots of medication for migraines and both have made me feel worse. 

 

I have got rid of constant dizziness, weak arm and leg since cutting out gluten and headaches have significantly improved. Could it be gluten that is the culprit??

 

Apologies for the long post! Thanks.

[squirmingitch]

First, there is no test for non celiac gluten intolerance. For the celiac blood panel you have to have been eating gluten. 

From: Open Original Shared Link

"How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional."

 

Also, it doesn't sound like your doc did the proper celiac blood panel the first time. His talking about 2 markers doesn't sound right. Here is the current full celiac blood panel:

 

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA 

 

The DGP test was added recently to the full panel.

 

 

Also can be termed this way:

 

Endomysial Antibody IgA

Tissue Transglutaminase IgA 

GLIADIN IgG

GLIADIN IgA

Total Serum IgA 

Deamidated Gliadin Peptide (DGP) IgA and IgG

 

 

[GFinDC]

Hi Hchenery,

 

Welcome to the forum!

 

Antibodie testing is useless after you stop eating gluten.  Unless you do a fairly long period of eating gluten again it just doesn't work.  After all, the whole point of the gluten-free diet is to lower the antibodies so they don't do damage to the body.  Some doctors don't seem to understand that though.  Duh!

 

It is possible to have nuerological symptoms mainly and not much in the way of gut symptoms.  Also some people get the skin form of celiac disease DH (dermatitis herpetiformis) but don't show gut symptoms right  away.  It almost seems like if the immune response is targeting one body organ it concentrates it's damage there and leaves other areas alone.  But usually that changes over time and gut symptoms start up or other organs are affected later.

 

Dr. Hadjivassiliou has done a lot of important research on nuerolgical affects of gluten.

Nuerological symptoms without gastro symptoms
Open Original Shared Link

Dietary treatment of gluten ataxia
Open Original Shared Link

 

You could ask your dr to test you for vitamin and mineral levels.  Celiacs often have some vitamin deficiencies before going gluten-free.

[nvsmom]

The only test that is thought, by some, to possibly indicate celiac disease and non-ce,iac gluten intolerance (NCGI) is the AGA tests. The others all show that your body is attempting to do damage to your intestinal villi, which is usually the defining diagnostic criteria for celiac disease. NCGI does not cause intestinal damage but it can cause all the nasty symptoms that celiac disease does. If you had a positive celiac disease test, it was rob ably caused by celiac disease.

The tTG IgA test can show as a weak false positive for some with diabetes, crohn's, colitis, thyroiditis, chronic liver disease, or serious infections. It's not common though. I believe the specificity of the tTG IgA is around 95%, so only 5% of positive tTG IgA tests are caused by these other issues.

It isn't uncommon for celiacs to only have one positive test, that s part of the reason they run so many. Some have negative blood tests but a positive biopsy, and vice versa. Some celiacs are IgA deficient (about 5%) so all IgA based tests will be inaccurate with false negatives.

Good luck with the gluten challenge if you decide to pursue further testing. The biopsy often requires a shorter gluten challenge (2weeks) than for the blood tests (2 months) so that could be an option for you if you don't want to do a full gluten challenge. Best wishes.

[hchenery]

Thank you all for your responses, the info on testing is very useful thanks. I have had a few blood tests (not for celiac disease) during last 12 months to figure out why I have been feeling so awful and rundown and they have shown that I have a low WBC (just outside the range) and lymphocytes are low which I've read can be the case with celiac. In hindsight I should have been patient and waited for more testing but I really didn't think going gluten free was going to be the answer and wanted to try anything to feel better. With the Christmas break it seemed such a long time to wait esoecially as my doctor was talking about re-resting 3 months after Christmas!! I'm now convinced that gluten is the problem whether its celiac or a gluten intolerance. Very annoyed with myself now with the thought of having to go back to normal diet and feeling rubbish for another 12 weeks but lesson learnt...be more patient!!

Thanks for your very valuable input