Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Mayo Clinic Celiac Center

Eric

By Eric
in Doctors

Recommended Posts

Eric Rookie
Eric
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tiredofdoctors Enthusiast
tiredofdoctors
Posted

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.

Stardust Valerie Newbie
Stardust Valerie
Posted
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.

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?

  • 2 weeks later...
sarahjo Newbie
sarahjo
Posted

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

Smitten Rookie
Smitten
Posted

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

JodiC Apprentice
JodiC
Posted
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.

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 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.

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

ovalexpress Newbie
ovalexpress
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
RBC Newbie
RBC
Posted
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.

JodiC Apprentice
JodiC
Posted
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.

Guest Educator
Guest Educator
Posted
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 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.

ovalexpress Newbie
ovalexpress
Posted
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 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".

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,853
    • Most Online (within 30 mins)
      7,748
    Judy Ryder
    Newest Member
    Judy Ryder
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      9 Year Old test results - help interpret

      By knitty kitty · Posted

      Welcome to the forum, @Gill.brittany8, Yes, the bloodwork is confusing.   One has to be eating a sufficient amount of gluten (10 grams/day, about 5-6 slices of bread) in order for the antibody level to get high enough to be measured in the bloodstream.  If insufficient amounts of gluten are eaten, the the antibodies stay in the small intestines, hence the statement "tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet."  The bloodwork reflects anemia.  People with anemia can have false negatives on tTg IgA tests because anemia interferes with antibody production.  Diabetes and Thiamine deficiency are other conditions that may result in false negatives.  Anemias, B12 deficiency, iron deficiency, Thiamine deficiency and gastritis are common in undiagnosed Celiac disease.    The DGP IgG antibody test should be given because your daughter is so young.  Many young people test positive on DGP IgG because their immune systems are not mature and don't produce IgA antibodies yet.  Your daughter has several alleles (genes for Celiac disease).   Your daughter needs to be checked for nutritional deficiencies.  Iron (ferritin) B12, Vitamin D, Thiamine and Vitamin A should be checked.   Were any biopsies taken during the endoscopy? Keep us posted on your progress.  
    • knitty kitty
      Years of testing - no real answers

      By knitty kitty · Posted

      The intestinal tract can be as long as twenty-two feet long, so intestinal damage may be out of the reach of endoscopy tools.  Some people have had more success with capsule endoscopy, but this method cannot take biopsies.  
    • knitty kitty
      What should I do with these test results?

      By knitty kitty · Posted

      @Jack Common, It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ For clarification, the weight of your slice of bread is not equal to the amount of gluten in it.   Gluten helps form those big holes in breads, so breads like thick chewy pizza crust and artisan breads contain more gluten than cakes and cookies.  
    • knitty kitty
      Guidance on next steps after the lab tests

      By knitty kitty · Posted

      Sorry about that link.  It was meant for a different post.   Do consider taking high dose Vitamin D in order to get your level up to around 80 nm/l quickly.   This is the level where Vitamin D can properly work like a hormone and can improve the immune system and lower inflammation.  It makes a big difference.   I took high dose Vitamin D and really improved quickly.  I ate Vitamin D supplements throughout the day like m&ms.  My body craved them.  Very strange, I know, but it worked.   Before you have surgery, you really need to improve your vitamins and minerals.  Vitamins A and D, Vitamin C and Niacin are extremely important to skin health and repair.  Without these, the body does not repair itself neatly.  I've got a scar worthy of a horror movie.  My doctors were clueless about nutritional deficiencies. A sublingual Vitamin B12 supplement will work better for boosting levels.  Tablets or liquid drops in the mouth are easily absorbed directly into the blood stream.   Do bear in mind that about half of Celiac people react to the protein in dairy, Casein, the same as they react to gluten because segments of the protein in Casein resembles segments of the protein Gluten.  Some people lose the ability to produce lactase, the enzyme that digests Lactose, the sugar in dairy, as they age.  Others lose the ability to produce lactase because the intestinal Villi become damaged during the autoimmune response against gluten, and damaged chili can't produce lactase.   Do try Benfotiamine.  It has been shown to improve gastrointestinal health and neuropathy. Keep us posted on your progress!
    • ABP2025
      Guidance on next steps after the lab tests

      By ABP2025 · Posted

      Thanks sending me additional links including how to test for thiamine deficiency. With regards to your first link, I wasn't diagnosed with giardiasis and I didn't take antibiotic for it. I try to generally stay away from antibiotic unless absolutely necessary as it might affect gut health. For treating phimosis, the doctor didn't give me antibiotics. I need to have a circumcision surgery which I haven't got around to schedule it.
×
×
  • Create New...