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Member Since 30 Mar 2010
Offline Last Active Jan 22 2013 05:23 AM

Topics I've Started

Help?! For Post-Diagnosis: Mayo Vs Columbia Vs Chicago, Etc. - How Do You Choose W...

21 January 2013 - 12:20 PM

Hoping to get some advice from all of you wonderful people... Thanks so much to everyone for the fantastic information available here!

I was diagnosed with Celiac at the Mayo Clinic in Rochester almost three years ago and have been rigidly gluten free since then. I do eat out, maybe more than I should, but I'm really, really careful about where I go, what I order, etc. Also eat mostly organic, unprocessed whole foods at home.

Unfortunately, I had another round of tests done recently and it's not looking good! All of my numbers, while slightly improved, are still really high, and my biopsy still shows villous atrophy just as severe as it was three years ago.

I haven't been back to Mayo because, honestly, I wasn't thrilled with the experience and it was very expensive and a really long way for me to travel. (I live in Michigan.) It seemed to me at the time like I could just follow the diet and continue to monitor my vitamin deficiencies and other issues without going through the hassle and expense of another visit to Mayo - having gotten a very clear diagnosis, I didn't see the point of returning.

Now that I'm three years into the diet and still dealing with a lot of symptoms and not much improvement in my test results, I'm thinking it's time to see a specialist again - but I don't know where to go! Or even, really, if I should go at all!

I have enough neurological issues that I really want to see someone who can address those questions, and Mayo didn't even mention them. I didn't worry about it at the time because I thought the diet would solve everything. I'm also thinking maybe I need to be checked for refractory celiac?

On the other hand, I've just spent an entire day reading everyone else's posts about their experiences at the specialty university/research clinics, and, once again, I'm questioning whether or not it's even worth it! Can they really tell you anything more once you know the diagnosis for sure? Are they just going to tell me to keep following the diet? That would really feel like a wast of time...

I'm so frustrated and I have no idea what to think. I've pretty much lost my career to this stupid disease already, so I'm willing to travel anywhere to figure out why I'm not improving... I've considered Dr. Murray, Dr. Green, Dr. Fasano, U. of Chicago, etc., but none of them seem to have compelling info available on what they can actually offer someone who needs continuing treatment rather than an initial diagnosis.

Sorry for the long post... Thanks in advance for any thoughts you can offer. I'm feeling pretty desperate and frustrated!

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