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munchkinette

I Don't Get It- How Do I Get An Appointment At Mayo?

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I just called the mayo clinic to see about getting an appointment. I told the lady my issues and she said that fatigue plus gluten intolerance (non-celiac) weren't enough to get an appointment. She said she wasn't allowed to schedule time for that, and that I need a diagnosis.

What the heck? The whole reason I need to go is to GET a diagnosis.


Gluten free since Feb 2006, Dairy and Soy free since 2009

Anemic off and on since 2003

Negative tTG Ab, IgA, Gliadin Ab IgA, wheat allergy (IgE) blood tests (Feb 2006)

Positive wheat allergy skin test(Apr 2006)and dietary response (Feb 2006)

Celiac grandmother (Dx in 1940s, "grew out of it")

Training for my first triathlon to support the Crohn's and Colitis Foundation of America.

~Amy

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I called up a University celiac disease clinic for my sister to see how she could get an appointment. They were very compassionate but said she couldn't make an appointment directly and should see her GP or any other Dr. who would agree and ask for a referral, then she could get one.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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Check to see if they have a walk-in ER

I just called the mayo clinic to see about getting an appointment. I told the lady my issues and she said that fatigue plus gluten intolerance (non-celiac) weren't enough to get an appointment. She said she wasn't allowed to schedule time for that, and that I need a diagnosis.

What the heck? The whole reason I need to go is to GET a diagnosis.

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I tried and tried to get them to give me an appointment. They were very nice about it, but turned me down flat because I wasn't classic celiac enough (diarrhea, weight loss, etc.). I wrote a very detailed letter directly to the main doctor and got a nice one back. The bottom line was that they are so busy with classic celiac patients that those of us outside of the box couldn't be seen. They said if my regular doctor was absolutely convinced enough that I had full blown celiac and contacted them himself, they might try to fit me in. But they also said that because I had a negative blood test (after being gluten free for a year), it was highly unlikely that I had celiac anyway. I gave up. I've yet to find any doctor that will pay any attention to me concerning my suspected gluten intolerance. My entire self diagnosis has been based on what my enterolab tests unquestionably said. But no one seems to know what Dr. Fine is even doing these days and no doctor will accept his tests as valid. I have decided I'm on my own.

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I went to Mayo in Minnesota. If I remember right( this has been around 8 years ago) I had just my regular family dr. make an appt for me. We didn't know what was wrong with me at the time as I had gone to countless specialists in the area and not one of them could figure it out. I think it took around a month for me to get an appt. Now I have my own patient # and whenever I would like to come in I just have to call. But I have found a DR. now in my area who is EXCELLENT with celiac disease!! No more trips to mayo unless I want to.

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