I have been referred to the Celiac Center in Minnesota to be examined by a Dr. Joseph Murray. Has anyone been to a Celiac Specialist, and if so, do you reccomend the trip. I live in Oklahoma, so the trip will require some extensive travel, but I do understand the importance. Thanks for any advice.

I don't know about the celiac center. Despite being diagnosed with "gluten ataxia", I was referred to neuro, and was never referred to the celiac center -- which, given my antigliadin levels, should have definitely happened. My experience with neuro was NOT good. To the extent that we threatened to report them to the Minnesota Attorney General. I've heard really good things about the celiac center, but with regard to Neuro -- forget about it.

Our family is in the process of setting up an appointment there to see Dr. Murray. My husband and two sons have celiac and I have gluten intolerance. We have seen the effects of undiagnosed and untreated celiac. My husband was diagnosed with MS and Chrons which is really undiagnosed celiac. I believe going right to the top is the best choice. You don't have to convince anyone that this is what is happening to you. Our doctors denied us for years. They couldn't put the puzzle together for any of us. I think when you are dealing with something like this it is best to go with experience and get the best advice right away.

What type of symptoms are you presenting?

mostly all the people in my local support group have seen him, they love him, i guess he is really good.

My Gastro called up there to ask questions regarding my situation. So, I say they must be very reputable if my doctor was trying to get advise from them.

Shelly

YES, this man is wonderful. When I first saw him he ordered tests that no one else had thought of. In a matter of 4 days I had seen so many specialists it was hard to keep track of. By the end of my stay there I knew exactly what I was dealing with. Celiac (which we did end up doing a challenge for - still positive), Sjogren's, Fibromyalgia, ostiopenia, and respiratory lung disease ( caused by second hand smoke - from childhood). Dr. Murray is one of the leading researchers of this disease and is very very very knowleable. I don't know where I would be without him.

If you go to Mayo, make sure you plan to stay for a few days. The Kahler Inn and Suites has 2 bed rooms with kitchenettes. There is a fridge, microwave, table, and sink. They are very nice rooms and are adjoined to the Clinic. You also get clinic rates when you stay there. The restaurants can make meals totally gluten free and you can even order pizzas from the local delivery. They are wonderful.

Anyway, as you can see I am all for this place. In fact the last time I was there so was the Dahli Lamma!!!
Katrina is Dr. Murray's scheduler and is wonderful with schedules.




I agree, the neuro docs didn't seem to know to much about Celiac. Fortunately Dr Murray ordered all my test so I didn't have to rely to much on their lack of knowledge

I was diagnosed at the Mayo Clinic in March. Everyone there was so nice. I saw Dr. Roman Perri. I think he must be a resident or something. But he was very knowledgeable. I stayed at the Brentwood All Suites (it has changed names numerous times so I'm not totally sure of the name now) and they also have refrigerators and microwaves. I believe they have laundry facilities also and you get clinic rates there too.

I would definitely make the trip. I was very skeptical at first when I was referred there, but they figured out in one day what other doctors couldn't. And you will be there several days. I was scheduled for a two day stay, but ended up with three. Of course I only packed enough clothes for two days and had to go to the gift shop to buy an extra shirt and some socks. LOL

Excuse me for my ignorance as I am new to Celiac and this message board! In regards to the Mayo Clinic, what made you decide to go there? Did you start a gluten free diet and not get better, or did you begin to have other side effects, or did you go there to get initially diagnosed? I am just curious because I have been having "episodes" of severe heart pain and palpitations and my doctor seems to be taking it lightly. I just wonder if it is related to Celiac or if i should be concerned that it may be something else? I just feel as if the doctors hear do not have alot/enough experience with Celiac, and may be missing things.

I went back because I started having new ab pain. I was also extremely tired despite being gluten free. My family doc was stumped and through the research I was doing found out about Dr. Murray and had her refer me. I too had heart trouble... turned out to be low potassium. Now I have a abnormal T wave that needs to be explained. My advice is to find a doc that deals with Celiac and all the related conditions. You will definately save yourself time, money, and anxiety.

I just came home from Mayo Clinic in Rocheser. I also live in Oklahoma. The place is awsomely big and very fast with making diagnosis. They did a biopsy on my intestines and blood work and found my celiac had not improved over the year I have been on a gluten-free diet. I have many many other health issues so I was there for 16 days. You will see a lead doctor and a bunch of tests will be ran and depending on the result of those tests you may have more tests. You will see you lead doctor at the END of all the testing. Hope you have a pleasent trip and learn something new. It is a 10.5 hour drive from Muskogee, OK. I stayed at Brentwood Suites and Inn. The suites have microwaves and all rooms have a small fridg. There is also laundry facilities, free coffee, and continental breakfast, Mayo clinic rates. It is also connected by the walking subway and if you don't feel like walking there are wheel chairs everywhere or you can take the free shuttle straight to the clinic. I believe the rates were around $63.00 per night for two people.

I was referred there by my gastro doc and a surgeon. They thought I was having biliary problems because my liver enzymes were elevated and every time I ate something fatty I got severe right upper quadrant pain and nausea. My gastro doc wanted to send me there after an ERCP that went bad (sprained abdominal muscles) and a negative enteroclysis (looking for celiac and crohn's) because he found my abdominal lymph nodes were enlarged on CT and the fact I had chronic diarrhea, night sweats, itchy rash - but I bucked him because I didn't think my insurance would pay for it. Insurance did pay for it and am I ever glad I went. I did get a call from my gastro after my diagnosis and he felt sooo bad he didn't figure it out. I think he was so fixated on my liver and RUQ pain he couldn't see "out of the box".