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My Experience With Mayo Clinic

tcmom

By tcmom
in Coping with Celiac Disease

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tcmom Newbie
tcmom
Posted

Hello,

I thought I would share my recent experiences in case it could help anyone with access to the Mayo Clinic in MN.

I am a 42 femaile and recently had a blood test the came back with "very likely celiac." I have had symptoms for years and even asked my Dr. in 2008 about it, she basically shunned me and told me I didn't know what I was talking about. Finally, a few weeks ago a new patch of blisters broke out on my knees (I have had these blisters for 20+ years and could never get a diagnoses) I got an appointment with a new Dr. (purposely picked a young female doctor knowing I could be more assertive with myself) and told her I wanted a Celiac blood test. She obliged and was shocked at the results.

As soon as I got the results I called the Mayo Clinic in MN knowing they have Dr. Murray, a celiac expert. Fortunately the Mayo Clinic is in-network on my insurance. They took all my information and had me fax medical records and my recent blood test results. They called me back in 2 days and wanted to see me that same week for a meeting with Dr. Murray and an endoscopy of my small intestine! I was shocked I got in so quickly. It turns out they are doing 2 research projects right now on celiac and one especially on newly diagnosed patients. My meeting with Dr. Murray was fabulous. He took everything I said seriously, not the usual "oh, that's not related" bit I've heard over the years. He was truly interested in all my symptoms, stuff my husband brought up that I didn't think could possibly be related (good to bring DH along to remember all those times you complained about stuff or had weird allergic reactions).

At this point I don't know the results of my biopsy. I have another appointment with Dr. Murray on the 18th to go over my results. He ordered several other blood test for allergies or markers for other diseases. I feel confident even if my biopsy comes back negative he will help me figure out what is wrong with me.

If there is anyone else out there with positive blood results living within driving distance or willing to spend a night or two in MN I highly recommend the Mayo Clinic. I think some people think you need to have a special referral or on your death bed before contacting them, but you don't. I called them up without my Dr. even knowing and not fully understanding my blood test results. Along with my next appointment they have a bone density scan set up and a meeting with a dietitian.

For a reference my symptoms include: DH skin rash (not officially diagnosed), inflammatory osteoarthritis (autoimmune), mild digestion problems and bloating (but unknowing had already cut back majorly on gluten), fatigue, low iron.

Christine

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suziq0805 Enthusiast
suziq0805
Posted

I'm in a gluten challenge right now and live within 4 hours of Mayo...I've actually been a patient there a few years ago due to chronic pain that nobody has figured out. I have a biopsy scheduled for 6 weeks from now. I am curious about the research projects though. Do you know what research projects they are doing? If I get a celiac diagnosis I may be interested. Also- do you know if you participate in the study if you have to pay for the medical care/tests? If I get a celiac diagnosis I'm wondering how many of my family members have it also. My father was recently laid off and my mom doesn't make nearly the $$ he did and so they only have temporary health insurance. My mom, dad, and 16 year old brother have some symptoms so I'm waiting to find out if I have celiac. I really don't know anything about research projects, but if they pay for travel or medical care maybe it would be an option for my family if I get a diagnosis of celiac.

tcmom Newbie
tcmom
Posted
  • Author

I might not get this exactly right because I didn't fully understand the research projects but here's what I gathered:

The first one was to use a test strip, almost like a pregnancy test, to see if it could be used in doctors offices for instant celiac testing results. She took a pin prick of blood and put it onto the test strip. I came up as negative!

The other research had to do with genetic testing and DNA markers. It involved giving extra blood and a couple extra biopsy samples along with daily phone surveys for 1 week.

I don't think they would pay for lodging and testing (although I was paid a small amount for participating).

I didn't know anything about the projects until the day of my appointment when 2 different women came in to talk to me about them. Maybe they vet the patients according to their needs? I do know they were looking for people who had not gone completely gluten free and were newly diagnosed. Since my biopsy had not been done yet, my participation in the 2nd one is on hold.

I hope you find some answers in your biopsy!

Marilyn R Community Regular
Marilyn R
Posted

If you can get a copy of your blood tests, I would love to know which tests Dr. Murray ordered. It's so nice to read about a positive experience with a doctor/hospital system. Thanks for sharing.

eatmeat4good Enthusiast
eatmeat4good
Posted

Girl!

You are one Lucky Duck!!!

One very Lucky Celiac Duck!!!!

I'm very happy for you!

You hit the jackpot in medical care and you finally have some validation!

Thank you for posting such good news!!

Greenling Newbie
Greenling
Posted

Just want to back up what you're saying about Dr. Murray and the Mayo Clinic 100%! I was there in May and finally got a diagnosis after many years of symptoms. Every person with whom I had contact was outstanding--caring, friendly, and willing to take time to listen. Dr. Murray was delightful and a wealth of information for me (as I had no idea that this diagnosis was coming). The costs were quite affordable, considering the level of care and the extensive eval they had to do. I cannot recommend the Mayo more highly!

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