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Member Since 09 Aug 2011
Offline Last Active Sep 05 2011 01:56 PM

Topics I've Started

First Time Traveling & Eating Out gluten-free

14 August 2011 - 04:09 PM

I was diagnosed a little over a week ago and this weekend was the first time I've traveled and went out to eat being gluten-free. Since we drove I was able to bring a cooler full of gluten-free food but when we got there my SIL was bent on going out to eat! DH is so good, he tried to explain about Celiac and being gluten-free but that didn't go over very well. SIL thought I could just have a salad and I'd be fine. SIL wanted to bring the kids to Space Aliens for dinner. We caved and agreed to go out to eat even though I brought gluten-free brats for everyone.

The waiter was very nice, I told him no croutons, no roll, no onion rings on top of my steak. DH told him I had to be gluten-free and the waiter suggested I didn't use the spices on the steak either. I was shocked he even knew what it meant! Not thinking I ate some of the Caesar Salad, I don't know if it was gluten-free or not but I felt a little ill the next morning. I would just rather not go out to eat. We spent a small fortune and I still didn't feel very good.

The whole experience was extremely stressful. I hate inconveniencing people. My BIL thought I was nuts having to open a new butter because the used butter was full of bread crumbs. DH was my hero sticking up for me every step of the way! Hopefully I don't become a hermit!

Maybe I will have to have more parties because I love to cook and without knowing it have been cooking nearly gluten-free all this time!

My Experience With Mayo Clinic

09 August 2011 - 12:17 PM

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.


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