Finally figured out what the wrong test was, considering a new test

[cari83]

I posted in January about a test I had had, supposedly for celiac disease, while living abroad. Someone said it wasn't the test for celiac. Then tonight I was looking on a lab tests site (where you can order them yourself) and one says "Gluten Blood Test" and it says "Diagnoses celiac disease." I looked at it and its sample report and realized that's the test that was run on me. IgE. Actually that's not the celiac screening test but it's a test for "gluten allergy" so I don't think this website should be able to say it can diagnose celiac disease. https://www.walkinlab.com/labcorp-gluten-blood-test.html I found this other website saying clearly "Celiac disease differs from IgE-mediated food allergies in several important respects. Celiac disease is NOT mediated by allergen-specific antibodies including IgE." https://farrp.unl.edu/resources/gi-fas/celiac-disease

So I'm still thinking the IgE tests I had were not reliable. Now that I'm back in the US I hope to get a celiac screening blood test, the right one this time. The vibrations in my leg did go away after I tried a gluten-free diet for the second time, early this year. But when the major muscle jerks and tremors didn't go away, I went back on gluten. I know it was stupid but...I have no excuse. Anyway someone here even told me in January that it could take years for neurological problems to go away if they are caused by gluten. I will go see a neurologist in the US for MRI and other testing. But I'm seriously considering being gluten-free forever - though I'd really like the test first because making sure that I have it would really motivate me to actually stick to the diet. When you think "Oh I haven't been tested, I don't even know if I have it" then it's easy to give up. Sorry this was a long ramble but I'm tired of digestive and neurological issues.

 

Carla

[cyclinglady]

Hi!  It is nice to see that you are doing research.  

You are correct.  Your tests were IgE based.  It looks for IgE antibodies that go into attack mode when exposed to things like peanuts, ragweed, cats, bee sting and yes, even wheat.  An IgE response would include: itchy eyes, hives, sneezing, asthma, vomiting, abdominal pain, swelling or even anaphylaxis.  

Celiac disease (an autoimmune disorder like MS or lupus),  looks for antibodies (immune system attacks self).  In the case of celiac disease, it usually attacks the small intestine causing malnutrition.  It can be systemic too.  It can manifest in a horrible itchy rash called Dermatitis Herpetiformis and more recently discovered it can cause antibodies to attack the brain called gluten ataxia.  

In case I am not clear, I provided this link for more in depth explanation: 

https://gluten.org/resources/getting-started/celiac-disease-non-celiac-sensitivity-or-wheat-allergy-what-is-the-difference/

if you are back on gluten, get tested.  These are the correct tests for celiac disease:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

I recall that you had a head Injury that maybe the cause of your current symptoms.  Often people feel better on a gluten free diet because they have limited access to foods, they end up making healthier choices.  Please find a neurologist.  I am sure you want relief!