Any thoughts on these negative test results?

[Seeker]

Someone suggested I gather my Celiac test results for appointment with Dr. Fasano. I am missing one test, but have the most recent Celiac panel. Be interested if anyone has any thoughts on these negative results. See Dr. Fasano on Dec. 2 and have Physical with new internist tomorrow (Monday, Nov. 24). Would these results rule out Celiac (as most docs have said so far) or Gluten sensitivity?

Thanks

Hopeseeker

Celiac Disease AB Profile

Antigliadin Abs, IgA = 2 u/ml (negative 0 to 4)
Antigliadin Abs, IgG = 2 u.ml (negative 0 to 9)
t-Transglutaminase ((tTG?) IgA = 1 u/ml (negative 0 to 3)
Reticulin IgA Ab Negative titer (Neg: <1:20)
Reticulin IgG Ab Negative titer (Neg: <1:20)

[Zonulin]

I think you can be pretty sure Dr. Fasano will rule out celiac disease with those test results. The Antigliadin IgG antibody test (more "sensitive" for gluten sensitivity) is also disappointing if you're looking for that diagnosis. My son's result for that test was a 69 (normal range 0 - 20), although his other celiac panel blood test results were within the normal range. I wonder if Dr. Fasano would consider ordering the lactulose-to-mannitol test which RESEARCHERS use to check for intestinal permeability for YOU??

Karen

[pab]

karen, does her list of tests include the one for IgA deficiency?

[Seeker]

I think you can be pretty sure Dr. Fasano will rule out celiac disease with those test results. The Antigliadin IgG antibody test (more "sensitive" for gluten sensitivity) is also disappointing if you're looking for that diagnosis. My son's result for that test was a 69 (normal range 0 - 20), although his other celiac panel blood test results were within the normal range. I wonder if Dr. Fasano would consider ordering the lactulose-to-mannitol test which RESEARCHERS use to check for intestinal permeability for YOU??

Karen

I have no idea, should I ask him? Would he or anyone likely do a biopsy with these results? Internist ordered another Celiac test today, at my request (for Physical).

Hopeseeker

[Seeker]

I think you can be pretty sure Dr. Fasano will rule out celiac disease with those test results. The Antigliadin IgG antibody test (more "sensitive" for gluten sensitivity) is also disappointing if you're looking for that diagnosis. My son's result for that test was a 69 (normal range 0 - 20), although his other celiac panel blood test results were within the normal range. I wonder if Dr. Fasano would consider ordering the lactulose-to-mannitol test which RESEARCHERS use to check for intestinal permeability for YOU??

Karen

Karen,

I hope I am not going diagnosis shopping or fishing; I just want to know what is causing my muscle problems; be it Celiac, gluten sensitivity of something else.

Hopeseeker

[jcc]

karen, does her list of tests include the one for IgA deficiency?

I had the same thought. A test for Total IgA should be ordered to rule out IgA deficiency, which could alter the other results.

[Seeker]

karen, does her list of tests include the one for IgA deficiency?

I believe I've had repeated saliva tests showing IgA deficiency. This was unconventional saliva test holistic doc ordered for cortisol/Dhea curve.

BTW, I'm a he; I think :)

Hopeseeker

[pab]

I believe I've had repeated saliva tests showing IgA deficiency. This was unconventional saliva test holistic doc ordered for cortisol/Dhea curve.

BTW, I'm a he; I think :)

Hopeseeker

sorry about the "gender bending"...lol......i would def have the doc do a blood test to follow up the saliva test.....it could be important,,,good luck

[Seeker]

sorry about the "gender bending"...lol......i would def have the doc do a blood test to follow up the saliva test.....it could be important,,,good luck

Do you mean a blood test for IgA deficiency? Guess I should show Dr. Fasano (who I'm seeing next week) the salivary tests. I'm not sure what the IgA relevance in relation to Celiac is, but I also have had low IgM levels on quantitative immunoglobulins. Last time (12/07) was up over previous levels, but still below normal range for IgM. Guess this is the same test for IgA as well? If so, IgA blood test has been in normal range on at least 3 such tests, but had bloodwork 2 days ago with internist for quantitative immunoglobulins again, though no results yet.

Seeker

[Zonulin]

Hi Hopeseeker -

That test for Total Serum IgA should be helpful for Dr. Fasano - this article discusses how IgA Deficiency affects the celiac panel test results: http://www.uchicagokidshospital.org/pdf/uch_007935.pdf - there are thousands of other sites out there which also explain this (over 21,000 today). I always forget to mention the Total Serum IgA - Pab and Cara are smart to catch that! :)

My son's second gastro was shocked to learn that the first gastro did not take my son's IgA Deficiency into account. He ordered the full Immunoglobulin Panel test for Ted, and we found that Ted's entire immune system was way below the normal range. But as the Mayo Clinic gastro told us, "We still don't know much about the immune system." This testing might give you a handle on what is going on...

I know it's the most discouraging thing in the world to try to figure out what is causing your symptoms - have you ever watched the program, Mystery Diagnosis ? That program is OUR story - over 20 doctors, hundreds of tests, no diagnosis, the dreaded psych referrals ("...must be in his head 'coz I can't find anything wrong"). :confused::mad:

If Dr. Fasano also has no answers for you on December 2nd, you might consider telling him you're writing a story about your medical experiences, and you need to know in what direction you should head - that might encourage him to consider a thoughtful referral instead of brushing you off. Because you ARE writing a story here on Braintalk - and you MIGHT decide to write about it for a magazine (as I did).

Karen