Seeing Dr. Fasano Tuesday
Posted 12 August 2012 - 03:11 PM
In March I realized (thanks to this forum) that my celiac testing was misinterpreted and actually seemed conclusively positive. My doctor would not provide an official diagnosis even though I presented the evidence I had found (again, thanks to this forum). Instead of taking the time to consider the studies I provided, she said I should see Dr. Fasano or Dr. Green. I went ahead and made an appointment with Dr. Fasano, and it's scheduled for Tuesday. However, now that I've waited almost 6 months to see him, I'm not sure what to expect or how to prepare besides bringing in copies of my records. Could really use some advice, because I feel a bit emotional contemplating what he might say.
I've been on a strict gluten-free diet since March and overall have been doing quite well, but I'm still very much experiencing the ups and downs of finding my body's new equilibrium. In fact, just about 2 months ago, I began to experience some circulatory issues (episodes of *freezing* and chills, when I've always been the runs-warm/perspiring type), and I was diagnosed with Raynaud's this past month. It was a bit scary to be diagnosed with that AFTER going gluten-free, and I just saw a rheumatologist who is trying to rule out other connective tissue issues. (Those results won't be ready until after my appointment with Dr. Fasano.) Also, I'm experiencing quite a few food sensitivities (tree nuts, most dairy), so again, I'm on a mostly positive trajectory but am a little nervous that I don't yet know everything that's going on.
Ever since March, I've adopted the mindset of acceptance that I have celiac disease. (That is a difficult reality to accept, but after reading the evidence, I've been convinced.) However, I was gluten light when I had the testing done, so my results were not clear-cut. Part of me has hoped that Dr. Fasano would still be able to give me a definitive answer -- because I do satisfy the 4-out-of-5 diagnostic criteria he established. I've also hoped that he would be able to test my zonulin levels to diagnosis me a different way (if zonulin levels remain high gluten-free, then it's celiac). However, now I'm concerned that he'll throw up his hands and say that there's really no way to tell after all and that I'll never know unless I do a gluten challenge. Gluten makes me feel terrible, so I am not going to do a gluten challenge...but basically I'd like a definitive answer so I know just how careful I need to be, especially when eating out and going to friends' houses (and needing to communicate the importance of cross-contamination).
Sorry for the long post, but I want to make sure I have a realistic expectation of the clarity Dr. Fasano will be able to provide. Does he conduct tests that are not yet commercially available (i.e. for zonulin or anything else)? Or will it be more of a check-up where he'll take some follow up labs and see if anything is high? Will he possibly test for other things besides celiac? I'd love for him to test me for food allergies/sensitivities, but is that what he does? Any words of advice from others who have seen him or Dr. Peter Green?
Thanks very much, (and again, sorry for the long post!)
Posted 13 August 2012 - 11:12 AM
I have also read about people going to professor Fasano, and heard only good about him. He also diagnosed based on blood tests and symptoms and increased IELīs but negative biopsies like they had to have in the old days (completely flattened villi)
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)
Posted 13 August 2012 - 12:17 PM
I was diagnosed almost a year ago and had both positive blood work and biopsy so that was not a topic I needed to discuss with Dr. Fasano and his team.
You will first see one of the other doctors (plus Med student most likely!) at the Center for an in-depth discussion of your history and any concerns/questions you may have. They will *love* you if you bring any and all records that pertain to your history -- at least they were very very happy I had all of my records copied for them to keep! At this point I gave a brief overview of my history and then stated and repeated (more than once) the reasons I had come for an evaluation (continued pain and lack of medical follow-up post-dx while living overseas.) The doctor goes off to brief Dr. Fasano on your status and then everyone comes back to talk with you. At this point you need to again state why you are at the Center...additional testing, etc. The time you spend with Dr. Fasano is somewhat brief (but it was longer than I was actually expecting...he did tell me he was skipping the whole 'what Celiac Disease' is since I was already diagnosed and had responded to the gluten-free diet as my antibodies are in the normal/negative as of my July bloodwork.) He addressed my concerns and I have a slew of tests (some of which should have been done right after diagnosis...don't get me started on the abysmal doctors I was dealing with) to have done with the results being sent to him for further review. I will most likely have to go back for another meeting once all the tests are completed.
I can say that everyone at the Center was friendly and helpful, the wait time was minimal (as in my appointment was at 1pm and I was talking with the first doctor by 1:10pm) and the fact that they actually listened and didn't dismiss my concerns as 'all in your head' was refreshing. It would have been great if I'd walked away with an immediate answer to my pain issue but at least they take it seriously and want to work to resolve it (and get me off the meds the Polish doctors put me on!)
Just remember you need to be your best advocate and ask ask ask for anything and everything that you think you might need.
As for allergy testing...I brought up the thought that food intolerances might be part of my continued pain issues but they didn't seem too keen on that idea. I didn't specifically ask about allergy testing at this point...will probably work with my new nutritionist on that issue while going throught some of the testing.
Posted 13 August 2012 - 03:32 PM
If you call into the appointment line (which may be too late now!) they can transfer you over to her. I would give it to you here, but I have it scribbled on a note at work so it isn't with me.
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