Doubts re. tomorrow's appt. with Dr. Fasano

[Seeker]

I'm having doubts and second thoughts about my first appointment with Dr. Fasano tomorrow (12/2). Just got back latest bloodwork from internist. Celiac panel was again normal, including serum IgA (had low IgA on saliva testing; though not sure that test is accepted by most docs). This is now, I think, my 3rd Celiac panel over maybe past 4 years, all negative.

Aside from reading on another forum of people's bad experiences with Dr. Fasano (things like waiting a long time in a cold room to see him) and the time and travel (figuring all told it will be half the day) despite what I've read here, I'm imagining that he will wonder and ask me why I came to see him, given negative tests and an absence of the usual, clear-cut symptoms or other test results (e.g. mineral or vitamin deficiencies). I think I'm mainly going to ask, then, about gluten sensitivity or gluten intolerance, but what will he be able to tell me about this, besides a GF trial perhaps? I am curious about any possible connection with the antiphospholipid antibodies I have and to neuromuscular problems, but am I likely just wasting my time - i.e. likely to have him tell me I don't have Celiac in the first 5 minutes, and that's that; come back if you develop new symptoms or ever test positive?!?

Are there any specific questions or requests I should make of him, such as other specific tests? I guess if I really want to know if I have a gluten problem and if that problem is related to my longstanding, undiagnosed muscle or neuromuscular problems, the best way would be to do a GF trial, right?

Hopeseeker

[Zonulin]

Hi Seeker -

Check your Private Messages!

Karen

[annelb]

Hi Seeker. I do not know where Dr. Fasano stands on gluten sensitivity right now. I have heard him say that if someone tells him that they feel better off gluten, then he tells them to stay off it even if there is no celiac disease. It would be nice if he would run the zonulin tests looking for leaky gut, but I think he is saving these until his antizonulin pill becomes available. You may ask him if he is testing people for zonulin.

If the blood tests are all negative, a biopsy may still be indicated if the symptoms are consistent with CD.

Have you looked into using Enterolab www.enterolab.com? It cannot diagnose celiac disease, but it can diagnose gluten sensitivity. I used Enterolab to confirm I have antibodies to gluten and a dietary trial convinced me I need to be GF for life. Enterolab tests are IgA tests so these too may be falsely negative if one is IgA deficient.

Have you ever tried a dietary trial?

As far as antiphospholipid syndrome and CD - here is one article about 3 women. http://www.ncbi.nlm.nih.gov/pubmed/18366270?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Have you checked out the information on The Gluten File http://jccglutenfree.googlepages.com/ This is a great resource.

There is no way to know ahead of time if your trip to see Dr. Fasano will be worth it. I hope he is able to give you a fresh perspective. Will be interested in hearing the details of your visit tomorrow.

Wish you well,
Anne

[Seeker]

Thanks Anne,

Do you know if Fasano might do the same test as Enterolab? Or if that test is covered by insurance? If it is a lot I wouldn't be able to afford it anyway at this time unless it is covered. I'll try to ask him about testing for gluten sensitivity though.

Thanks

Hopeseeker

[annelb]

Dr. Fasano will not do an Enterolab test. I would fall over in a faint if he said he would. :rolleyes: This test is not considered mainstream. It tests for gluten sensitivity not celiac disease. All people who have celiac disease have gluten sensitivity but all people with gluten sensitivity do not have celiac disease. In order to have CD one must have flattened villi.

I do know some doctors who will use Enterolab testing. I know some people who have had their insurance pay for the tests. The last time I checked, the test for antigliadin antibodies was $99.
Anne

[Zonulin]

I think the prices are reasonable - and sometimes the insurance will pay! Here's a link you might check out (your Plan B): https://www.enterolab.com/StaticPages/Frame_TestInfo.htm#stool_intestinal_malabsorption

Karen