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Seeing Dr. Fasano Tuesday
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4 posts in this topic

Hi all,

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!)

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I have read a report from someone who saw Dr. Greene and basically he took a sample of the small intestine and incubated it with gluten to check if it made celiac antibodies. (this was someone previously diagnosed with celiac, but who had experienced problems despite of a gluten free diet. They wanted to check if the patient really was celiac because only celiac make those antibodies, or something like that.

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 IEL

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I saw Dr. Fasano almost 2 weeks ago (will post about it specifically but it has been crazy with moving into our house which the renters semi-trashed, etc.)

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.

Good luck!

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Good luck with your meeting with him tomorrow! I wanted to see Dr. Fasano as I'm in the DC area, but couldn't wait til November to see someone. I'm sure that Pam King the Director of Operations at the office can help you out with any concerns you may have as well. I spoke with her before making an appointment elsewhere and she told me I can call her between every step of my diagnosis process to discuss with her.

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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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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