Celiac or NCGS???

[Shelles]

Hi.  I was called by the nurse yesterday and was told my blood test results came back showing that I can't digest gluten, but I am not allergic to wheat.  I'm not really sure what this means, what I am to do next etc.  I know I get stomacheaches after I eat things with wheat grains, like pizza.  I am experiencing joint pain, fatigue, and brain fog.  I have a follow up appointment with the doctor in a week to understand what the bloodwork means.  I know I was give a food allergy panel, a celiac disease panel and a gluten sensitivity panel.  I don't know specifically which enzymes they were testing as it wasn't labeled on the lab sheet.  Any ideas what this points to, Celiac?? NCGS?? Thanks for any insights.

[GFinDC]

Hi Shelles,

It could mean you have antibodies to the protein in gluten, (gliaden).  When they do a celiac disease panel they test for immune system antibodies to gliaden, which is a protein in wheat.  Celiac disease is not an allergy.   Allergy symptoms are caused by IgE antibodies to an allergen.  Celiac disease symptoms are caused by IgA or IgG antibodies to gluten proteins.  The proteins that cause reactions in a person with celiac disease are found in wheat, rye, and barley.   A smaller number of people also react to the protein in oats.

Usually the doctors do a ttg IgA test first, and then may follow up with a full celiac disease panel that includes more antibody tests like the IgG.

You should not stop eating gluten until all testing is completed.  The tests depend on finding an active immune reaction to gluten.  Usually a doctor will do the blood antibody tests first, then schedule an endoscopy to check for damage to the gut lining.  Stopping gluten too soon can cause the tests to be inaccurate.

NCGS does not cause damage to the gut lining, and does not cause raised antibody levels.  So if they found an elevated antibody level it was probably a celiac indicator, not NCGS.

It is a good idea to get a paper copy of your test results ad keep them.   Some people on the forum can help interpret them if you post the test results along with the reference ranges, which vary by lab.

Welcome to the forum!

 

 

[squirmingitch]

There is no such thing as a gluten sensitivity panel; at least not one that is recognized by the medical establishment at large.

You don't have to be allergic to wheat to be a celiac. It's 2 entirely different things.

If they gave you a celiac panel then what the nurse said points to celiac.

[Shelles]

Thank you both for your replies to my question. I appreciate the feedback and will seek out a paper copy of the labs to see in detail information about the antibodies tested.