New here, help please.

[Swinky]

I am new here and really confused. Before today, I had no idea of this condition.

I got test results back and they are:

IgA range of normal is40-350. Mine is 591.

IgA deamidated gliadin and IGg deamidated gliadin were normal.

Does anyone have any idea what these mean? Thanks ahead of time for any help.

[cyclinglady]

1 hour ago, Swinky said:

I am new here and really confused. Before today, I had no idea of this condition.

I got test results back and they are:

IgA range of normal is40-350. Mine is 591.

IgA deamidated gliadin and IGg deamidated gliadin were normal.

Does anyone have any idea what these mean? Thanks ahead of time for any help.

Did they  not run the Tissue Transglutaminase Antibodies  (TTG) tests?  The TTG is the most commonly used test for celiac screening.  The IgA   (Immunoglobulin A) is used as a control test in the case of celiac disease testing.  In your case, the DGP IgA test worked (but you said it was negative).  

[Swinky]

Sorry. I didn't know they were related. TTGA and TTGG were both negative also. 

[cyclinglady]

What made your doctor order the celiac panel?  Do you aphave any risk factors (see link)?    What are your symptoms?  

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[Swinky]

The neuro ordered it. I have been having tremors, hallucinations (mild), loss of memory and failed miserably a cognitive test. I'm 40 and he ran 20+ tests trying to rule out other issues before a parkisons diagnosis. The IGA came back so positive, research brought me here. I'm still awaiting a call back from doc about IGA levels as I'm so confused. 

[cyclinglady]

It is good that your Neurologist  is covering all bases.  Celiac disease can attack the brain and nervous system.  It is called gluten ataxia. It is still a new disease, so there is not much information:

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I do know that some celiacs are seronegative.  Some also present with dermatitis herpetaformis (DH), (celiac rash), often test negative on the antibodies blood tests.   The damage is to the skin and may or may not damage the small intestine, but most often it does.  

I am not sure how gluten ataxia plays out on serum celiac antibodies testing.  

I have much higher levels of Immunoglobulin A than you!  My doctors attribute it to my multiple autoimmune disorders.    There is a risk of cancer too for those with elevated Immunoglobulin A, but it is rare.  I would not worry about it, but you can always discuss it with your doctor. 

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Again, your doctor seems to be doing all the right things.  Try not to worry and let him do his job.  In the meantime, get a bit of exercise and eat some vegetables.  You will feel better and it can not hurt! Sometimes just a quick walk outside can make you feel so much better.  

[Swinky]

Thank you seriously for the info. The symptoms seem on par with my condition. How high are your levels? Are you progressing? 

[cyclinglady]

I assume you are talking about gluten ataxia?  I have celiac disease (in remission as confirmed by repeat intestinal biopsy), but I do not have gluten ataxia.  I did have and still have some slight cognitive issues and anxiety at times with some neuropathy, but that is due to my other autoimmune issues that ebb and flow and are beyond my control.  

I just live with my autoimmune issues because frankly, it is all that I can do.  I do believe in a good diet and exercise. Consider getting in a pool (walking, Aerobics) to reduce your fall risk and have a lifeguard on deck!   If your doctor suspects gluten ataxia, you need to be on super strict gluten free diet.   You do not want to mess around!  If you have Parkinson’s, figure out how Michael J Fox has managed (Back to the Future star).  Most people with PD live well.