Help reading results please.

[ketopia]

My doctor called me after my blood work and diagnosed me with Celiac disease. Then when I went to my f/u appointment looked at me like I was crazy. She said I don’t know what would make you think you have that…hmmm you literally called and told me. This is so frustrating. She’s saying I will have to take the test again to ensure results. However I can’t, I’ve been gluten-free for months, and even a pinch of a cookie made me instantly start to itch all over. 
 

 

Tissue Transglutaminase IgA AbYour Value<2 U/mL

Standard Range0 - 3 U/mL

Negative 0 - 3
Weak Positive 4 - 10
Positive >10
Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

IgAYour Value518 mg/dL

Standard Range87 - 352 mg/dL

Flag H

[Scott Adams]

It's hard to tell, but it looks like your tTG result was negative, which was the test for celiac disease, and the part of your results that is unclear to me would be the IGA results. If this was total IGA, which is high, this simply means that your tTG test was accurate, as IGA deficient people can have false-negative results on that test. If the second test you list was for endomysial IgA antibodies it would be positive for celiac disease, but this does not look like a endomysial IgA antibody test.

You can still have non-celiac gluten sensitivity, which ~10% of people have, and there is no test for this yet.

[RMJ]

Some doctors deal with celiac disease very poorly and don’t really know much about it.  I bet your doctor saw the high total IgA level and mistakenly thought you were positive for celiac.  When you saw her in person she looked at the results more carefully. Sounds like you know gluten bothers you, and luckily you don’t need a doctor’s prescription to go gluten free!

[trents]

4 hours ago, ketopia said:

My doctor called me after my blood work and diagnosed me with Celiac disease. Then when I went to my f/u appointment looked at me like I was crazy. She said I don’t know what would make you think you have that…hmmm you literally called and told me. This is so frustrating. She’s saying I will have to take the test again to ensure results.

 

You mention itching. Do you get a rash with pimples when you eat cookies or other wheat-based products? The itching could be a wheat allergy rather than celiac disease which is an autoimmune disorder.

[ketopia]

If I eat gluten I instantly feel sleepy like I’ve been drugged, have extreme itching(no rash or pimples) and within hours lower left abdominal pain. 

[trents]

Your high total IGA levels is the thing that stands out to me. It does sound like you need to avoid gluten for one reason or another but there could be other things going on that need attention as well. Have you had a CBC and a CMP recently?

https://labs.selfdecode.com/blog/high-iga/