What To Expect At The Mayo And Other ?'s

[geminigal]

I had previously went to MNGastro in Maplewood and the doctor there didn't do any blood test and just recommended and endoscopy. After the endoscopy the doctor said it looked like celiac disease (this was the first I had ever heard of celiac). I got a letter saying that they didn't find any cancer and everything was fine. I still went ahead with the gluten-free diet to see how I would feel and I felt 10x better, but not REALLY having a diagnosis was bothering me. I called down to the Mayo to see if I could see a doctor down there but the woman I talked to said they didn't usually treat you unless you were referred or had a diagnosis of celiac, but if I sent down my glass slide biopsy from the endoscopy she would see if a doctor would take a second look..............so........I got a call last Monday saying that the doctor would be happy to see me this upcoming Monday and they have set up an appointment for blood tests (a bunch she said, and she said she was suprised no one did a blood test before doing the endoscopy), and appointment for meeting with Dr. Murray, an appointment with the dietician and he also was thinking of having me have a bone density test done.

Now I am wondering if he saw something on the biopsies that the other doctor missed or if he is just willing to see me based on my other symptoms?

I am wondering what to expect from him as I am very nervous with doctors as so many of them have already looked at me like I am crazy when I have tried to find a reason for all my GI problems. Does anyone know if Dr. Murray is nice??

Has anyone had a similar experience with having someone take a 2nd look at the biopsy results??

I am just very confused, anxious, nervous and excited right now that any feedback would help

[GFhopeful]

hey - i am in a very similar situation to yours and am thinking about going to mayo too. they did do blood tests and a bone density scan for me at MN GI but all the blood tests were negative and the biopsy was a possible celiac (partial damage). but when i called mayo they said i had to send the glass slides and paperwork of what was already done before the docotor would decide if they would be able to help any further.

if you do a search on this message board for Mayo CLinic there are several people who went there and posted and gave positive feedback on it and Dr. Murray.

i too have been feeling better since going gluten-free but do have some remaining symptoms and just want to make sure that Celiac is all i have and something else isn't being missed. post again after your visit.

i need to get working on sending them my stuff. how long did it take for you to get in? the lady on the phone said it might be a couple months but i work in a school and have the summer off so would love to get in sooner to make the drive down there and get some answers sooner than later.

mn gi would probably do more tests for you if you called and told them you wanted more but they take so long to get in to anyway. i'd go to the expert and i think dr. murray is a big name in celiac. good luck.

[geminigal]

hey - i am in a very similar situation to yours and am thinking about going to mayo too. they did do blood tests and a bone density scan for me at MN GI but all the blood tests were negative and the biopsy was a possible celiac (partial damage). but when i called mayo they said i had to send the glass slides and paperwork of what was already done before the docotor would decide if they would be able to help any further.

if you do a search on this message board for Mayo CLinic there are several people who went there and posted and gave positive feedback on it and Dr. Murray.

i too have been feeling better since going gluten-free but do have some remaining symptoms and just want to make sure that Celiac is all i have and something else isn't being missed. post again after your visit.

i need to get working on sending them my stuff. how long did it take for you to get in? the lady on the phone said it might be a couple months but i work in a school and have the summer off so would love to get in sooner to make the drive down there and get some answers sooner than later.

mn gi would probably do more tests for you if you called and told them you wanted more but they take so long to get in to anyway. i'd go to the expert and i think dr. murray is a big name in celiac. good luck.

Actually, from the time I first called until my appointment it has only been 1 month! I was so suprised that I got a call back and an appointment so fast. The biggest delay was from MN Gastro in processing my request. It was a big ordeal which makes me not want to deal with them again......

I will let you know how it goes!!!

[geminigal]

hey - i am in a very similar situation to yours and am thinking about going to mayo too. they did do blood tests and a bone density scan for me at MN GI but all the blood tests were negative and the biopsy was a possible celiac (partial damage). but when i called mayo they said i had to send the glass slides and paperwork of what was already done before the docotor would decide if they would be able to help any further.

if you do a search on this message board for Mayo CLinic there are several people who went there and posted and gave positive feedback on it and Dr. Murray.

i too have been feeling better since going gluten-free but do have some remaining symptoms and just want to make sure that Celiac is all i have and something else isn't being missed. post again after your visit.

i need to get working on sending them my stuff. how long did it take for you to get in? the lady on the phone said it might be a couple months but i work in a school and have the summer off so would love to get in sooner to make the drive down there and get some answers sooner than later.

mn gi would probably do more tests for you if you called and told them you wanted more but they take so long to get in to anyway. i'd go to the expert and i think dr. murray is a big name in celiac. good luck.

After yesterday I don't think I would ever think of going anywhere but the Mayo for help with anything serious. Dr. Murray was as great, if not better than everyone said. He listened to me and every little symptom I had. He explained things well and took the time to answer any questions that I had or that my husband had (and he always has a lot). They seemed really up-to-date and the lists of questionable foods (and there were quite few that you don't have to look for anymore on the labels)

They took 14 vials of blood so i am pretty sure they ran all the tests they needed to I have to call him Thursday morning to get the results of the celiac specific ones. He also said that unless the DNA marker comes back that I don't carry the gene (because he said it impossible to have celiac disease then) I would be having a endoscopy. He said that the one that MN Gastro did was inadequete.........

Let me know if you have anymore questions for me and I really hope you choose to go there!!!

[GFhopeful]

that does it, i'm calling tomorrow to get my stuff sent there. i've been procrastinating as i have a baby and a 3 year old and just thought the drive down there would be a hassle but i'm sure it will be worth it just to set my mind at ease that the whole picture is being looked at. thanks so much for posting how it went. i need to go and just know that i've done everything i can to help myself recover. so it sounds like you will be going down there for any follow-up too? probably a good idea - i've never been down there and have it built up in my mind that it's a far drive but looking at a map, it's really pretty close. enough excuses for me.

[geminigal]

Just a heads up............ make sure they send you to the right place to get the slides sent down from MNgastro. I sent in the release to the fax they gave me and waited and waited and then finally got a letter saying that the glass slides were in a new building so I would have to call there and get them to send them. I still don't know why they didn't just do this for me!! I didn't need to send a new release or anything....the woman that I spoke to just agreed to send them, so I'm sure if the orignial records department person would have just called over there instead of writing me a letter with all the information (it was hand written) it would have all been a lot quicker.

[GFhopeful]

thanks - i sent the release in today so will call to make sure the glass slides get sent too. i forgot to ask, how long were the appointments - did you end up spending the night nearby or could you drive home that night? i know that everyone is different but just trying to plan for babysitter verses taking the kids with us or what. just the thought of a doctor who i can have some confidence in knowing what is going on - that's exciting. my general docotor has been good but no celiac expert by any means (and how could she be - she can't know it all) and the MN GI doctor was not all that helpful - seemed in a hurry. you know. you did really motivate me to follow through on this - and sooner than later. good luck getting some answers tomorrow. just wondering though, if you have been gluten-free for a while, how would they do another endoscopy?

[geminigal]

thanks - i sent the release in today so will call to make sure the glass slides get sent too. i forgot to ask, how long were the appointments - did you end up spending the night nearby or could you drive home that night? i know that everyone is different but just trying to plan for babysitter verses taking the kids with us or what. just the thought of a doctor who i can have some confidence in knowing what is going on - that's exciting. my general docotor has been good but no celiac expert by any means (and how could she be - she can't know it all) and the MN GI doctor was not all that helpful - seemed in a hurry. you know. you did really motivate me to follow through on this - and sooner than later. good luck getting some answers tomorrow. just wondering though, if you have been gluten-free for a while, how would they do another endoscopy?

definately make sure you call because that is what took so long for me. As soon as I got the slides down there they called back a week later and a week after that I was at the Mayo.

I had a 10am appt, a 1:15 appointment, and a 3pm appointment with the nutritionist (this is the only one I was not impressed with)

I am from St. Paul so I just took the day off.

And I was gluten free for quite a few months and then starting doubting myself and called the Mayo. After I got the call back that if I sent the slides the doctor would look over them I started eating "normal" again. It was only about 3 weeks and Dr. Murray said that that might cause the bloodwork to come back negative so he wanted me to continue eating a gluten filled diet in case he needed to re-test (if it shows that I carry the gene) after having a longer gluten challenge. So you might want to start scarfing down the donuts if you can handle the after effects...........I've had a constant headache, diarrhea, nausea, heartburn and vomiting........Oh JOY!

I don't know where you are in MN but I run a small home daycare if you needed someone to help you out for an appointment day......I'm pretty cheap

[GFhopeful]

that's a nice offer - we do have parents in the area that we can call on. i live in white bear lake. i don't think there is anyway i could go back on gluten right now. i'm not 100% sure that it was the cause, but i was having these acute attacks of pulse racing and couldn't even sit up in bed for like 4-5 days in a row and haven't had an "attack" like that for a month and a half (gluten-free for like 2 months). so i hope it doesn't come to that to get a definite answer for me. i feel bad for you as the headaches, D, etc are terrible. i won't worry about it for now but empathize with you. and i might need daycare in the fall possibly - how are you handling watching other people's kids right now? i don't know what i'd do if i didn't have the summer off to recouperate.

[RiceAddict]

I also go to Mayo for a variety of medical issues. They were actually looking for something else when they stumbled upon celiac--I had never even heard of the disease. So I had the one week with GI back in November but that was all my experience with that department. I saw Dr Arronson, he was a resident. He said I was his 4th celiac diagnosis ever--what luck. He was great, but I did not get a lot of info from him. I had a follow-up with dietary and they were worth their weight in gold! All the other services I have had there I am very happy with. That is a big place and they can be kinda pushy so just stand your ground and tell them what YOU want, they will listen.

Good luck.

[GFinMN]

thanks for all this info on what happens at the mayo. my doc said they may be referring me there next month but i wasn't sure what to expect. i live in shoreview, mn. seems to be lots of celiacs in our area

i have been gluten-free since april 1 but continuing to have other issues that the doctors cannot figure out - hypoglycemia type symptoms, bouts of racing heart, intolerance of all sugars, etc. they've tested my thyroid, blood sugar, etc. and can't figure it out. i wonder if Dr. Murray would be able to help. before i went gluten-free, i didn't have any of these other symptoms, so it seems related to the new diet somehow.

does dr. murray just diagnose celiac, or did he seem to be able to help with related issues???

[GFhopeful]

i haven't been to mayo yet but am hoping the same thing - that he will be able to help or shed light on remaining symptoms. of course, i would like a firm diagnosis but more than that, i would like to know if the symptoms i still have are part of recovery for some or if something else is going on. i too have the racing heart rate some days but i did have this before going gluten-free as well. i would think, though, that he's seen it all when it comes to celiac and celiac-complications so it's probably a good thing to get referred there. i hope it doesn't screw me up as far as insurance that i didn't get a doctor's referral. by the way, i'm sure you know this already, but just in case you don't, just mentioning fresh and natural foods in shoreview on 96 and lexington. pretty big store, as far as health food stores go, and they label things gluten-free. hope you get things figured out soon.

[RiceAddict]

May has a specialist for almost every condition known to man. They also have the capacity to test for anything in the human body that can be tested, and all state of the art. That is both good and bad. If you have symptoms that noone else can figure out, that is good. However, the Mayo system is set up so that you see a doctor and anything that lies outside their specialty gets you shipped off to another department so a quick visit can end up being a 2-3 day stay with tests, follow-ups, and seeing more specialists.

I have kidney disease and when the spring allergy season started up I was getting wattery eyes and sneezing a little. I just wanted my Dr to let me know if taking Benedryl or some other over-the-counter remedy would not be harmful to my kidneys. He totally ignored my question and proceeded to schedule a consult with an allergist. "NO!" I said. I did not whant to see an allergist, I know what is wrong, there is junk in the air that makes me uncomfortable and I know what I want to take and I just want to know if it will be detrimental to my condiiton. He was very hessitant to answer and really tried to get me to see the allergist, but finally he caved in and said that Benedryl and others were alright. So I picked some up on the way home and slept like a rock and woke up free and clear the next morning. It is just their mindset to really specialize to the point that it gets annoying. So like I said before, don't let them take control of you life. You CAN request earlier appointment times for almost every department, lab, and test. Don't wait around an extra two days just for a xray or something dumb. Go right in and ask if they have an earlier opening and they will help you.

Anyone going to be at Mayo on Aug 2? We can have lunch. There is also a small gluten free store in Rochester, pricey, but they have EVERYTHING.

[GFhopeful]

I doubt I'll get an appointment that soon. Could you mention the name of the store or a good restaurant you've been to. I haven't been out to eat since the dx so am a bit nervous about it but knowing someplace safe would be great.

[szelisk]

At least someone takes you seriously. I was diagnosed then dropped by the dr's in chicago. I couldn't even get an appt with a dietician. Blue Cross Blue Shield wouldn't cover it, if I was a diabetic they would, but not for celiac.

Whenever I see a doctor and tell them I have celiac, they reply like its nothing. I have even had some tell me its nothing more than an allergy.

This has made it very hard for me. I hate to say it, but I haven't been as good to with my diet. I am so tired of hearing "what is it", "where did you come up with that one", or "its just an allergy take some benadryl (sorry about the spelling).

[skyepie]

Hi,

Just a couple of comments regarding Mayo...... Even if you've had tests, x-rays, bloodwork, etc elsewhere, Mayo always insists on doing their own. They will look over anything that you bring in, but will request the same tests to be re-done. This has actually worked out to my (and my husband's) benefit. My theory is that if you are there for a second opinion, you may as well let them do all the work up.

For anyone who is lucky enough to get in to see Dr. Murray, hurray for you! He is one of the leading researchers/clinicians in celiac sprue, and is highly regarded and respected in his field. I saw one of his colleagues, a Dr. Mangan, for my endoscopy and bloodwork. But when I went in for my endoscopy, I was enrolled in one of Murray's research studies immediately. They took extra biopsy samples for it. I feel very fortunate to live so close to Mayo and what they offer their patients. From GI referral to diagnosis, it took 2 weeks. After 10 minutes of my intitial consultation with my GI doc, based on interview only, he had me diagnosed as either lactose or gluten intolerant. My blood and endoscopy confirmed the celiac. They know their stuff!

I should also mention that I work at Mayo Clinic and very closely with the GI department.

[par18]

At least someone takes you seriously. I was diagnosed then dropped by the dr's in chicago. I couldn't even get an appt with a dietician. Blue Cross Blue Shield wouldn't cover it, if I was a diabetic they would, but not for celiac.

Whenever I see a doctor and tell them I have celiac, they reply like its nothing. I have even had some tell me its nothing more than an allergy.

This has made it very hard for me. I hate to say it, but I haven't been as good to with my diet. I am so tired of hearing "what is it", "where did you come up with that one", or "its just an allergy take some benadryl (sorry about the spelling).

When your doctor dropped you ( mine actually didn't drop me but never saw fit to schedule a follow-up to check the progress) what he/she is really telling you is I have done all I can the rest is up to you. I thought in the beginning the GI doctor could provide "moral support" as far as coping with this lifestyle change. I really don't think the average GI or even family doctor has or wants to take the time to do this. Even if they did see you all they would really want to know is are you being compliant on the diet. If you are not then they have no way of knowing if there is anything else wrong with you. I did have the positive experience of getting a knowledgeable dietition who got me started with a gluten-free diet plan. Once again she did not follow-up. At some point you have to fully commit yourself to living gluten-free and see how you respond. If emotional factors or support (family, friends, co-workers etc) is not there then you can try to get other professionals to assist in that area. Be compliant and give the diet a chance to work. Good luck and I hope this helps.

Also my insurance paid for the dietition. I would press that issue. If I could change anything right now from the family practice level it would be for those doctors to get literature concerning gluten-free living (even if they do not understand it themselves) and at least pass it on the those like yourself so you have some starting point.

Tom

[RiceAddict]

That's a good point to make about Mayo wanting to redo everything. I see how it makes their system go smoother, but it is a big-time reality check for a lot of folks when they say "I just had that test done" However, they have tried to schedule tests or bloodwork at the clinic for me on days that I am not scheduled for anything else. That is when I put my foot down and say that I cannot take a full day off work to get a test done that I can have done at home over my lunch break. While they do prefer everything to be in-house, they will work with you about getting things done at your home dr.

Mayo also has outreach doctors. They travel (usually to smaller or rural communities) to perform Mayo services at local clinics. I do not know if GI has an outreach dr or where he/she might go, you may have to call and ask. I did my initial workup with an Endo and saw him once more in Rochester, but now he just comes to my home clinic for followup every 3 months, it's great.

The store in Rochester is call "The Gluten Free Cupbord" www.glutenfreecupboard.com It's on 3rd Ave not far from the big Walmart on Broadway. I know that Valentinos 130 Elton Hills Ln Nw has gluten-free pizza, and I have HEARD that Whistling Binkies-south had red bridge beer, but I have yet to check that out. There is an Outback that has very knowledgeable staff, ate there yesterday and wonderful as usual.

[Jennas-auntie]

If you are looking for restaurants and gluten free grocery items while you are there, you might want to check out Open Original Shared Link

They have a nice list going of which restaurants they have spoken with about how to be gluten free and have arranged certain menu items they have at least initially cleared with them. I've heard you can get almost everything on the menu made gluten free (with gluten free pastas) at Victoria's, downtown, and the people I know who went there loved it.

[RiceAddict]

OMG!!! gluten-free pasta at Victorias! I am so going back to Rochester this weekend. Jennas-auntie you are my hero! God bless you.

[Jennas-auntie]

OMG!!! gluten-free pasta at Victorias! I am so going back to Rochester this weekend. Jennas-auntie you are my hero! God bless you.

Have fun!

[Queener]

Isn't Dr. Murray wonderful?! About 2 yrs ago I started having rash on elbows, knees and ankles.... painful, itchy - gave me scars cuz I scratched so much. I went to my MD and he sent me to a dertmatologist. The derm looked like Doogie Howser (12 yrs old). He had no clue. I went home and just itched off and on. I had no gut problems whatsoever - other than I usually had D after pasta, but I assumed that was because I always ate it with TONS of garlic . I ran across an article in a Marie Claire magazine that discussed Celiac Disease symptoms but had a little box insert describing Dermatitis Herpetiformis (DH). I couldn't believe it - this was me. I went on-line and did lots of reading on DH and Celiac. One of the articles I read was written by Dr. Murray and included his email. I emailed him to ask if he knew of a specialist in the Twin Cities who could dignosis me - he didn't but said that he could see me - and gave me his assistant's number to call to make an appt. I was in very shortly and did blood tests, endoscope and of course skin "punch" (youch!!) biopsies of my skin near the rash. Dr. Murray was incredibly thorough and thoughtful. He is very familiar with the side effects and/or other diseases related to Celiac. He is actually a very well known Celiac expert around the World. I was so pleased to have the opportunity to meet with him - and he was so unbelievably down to earth!! I also am afflicted with Raynaud's which we discussed. He had me meet with a dietician too (pretty good, but could have been better, I agree with other poster) -- but still when I hear about people being diagnosed and having doc just say - oh, you have Celiac and sending them on their way, that's frightening. Mayo does take the time to ensure that you are well informed. I have had an annual followup with Dr. Murray. We have discussed my sister and her symptoms - he offered to look at her results, however, recognizes that the lab she went to most likely did it wrong. He has offered to test her as well - which I wish she would do..... Anyway, I just wanted to chime in about Dr. Murray at Mayo. He is top-notch!

[gaby]

Hi, I too was seen by Dr. Murray. and was mis diagnosed by him apparently. I am latin and he said I couldnt posibly have celiac disease, because I was latin, so he diagnosed me with irritable bowel syndrome a totally different thing.... Mayo Clinic said I had a cyst in my head and they said it was nothing....well it turns out to be it was something of importance, which I later did some studying on my own... I felt worse and worse so I did an MRI and my cyst grew so I just had surgery......

Now I am trying to put the puzzle together and see if my cyst has something to do with me being celiac..... I havent been diagnosed as celiac, but I have the symptoms and I feel so much better by not eating gluten. I get this pimple like rashes all over my face, my neck and back......used to get them worse when I had my cyst.....after having surgery I feel eating gluten makes me be imsomniac and I feel tired the next day...plus anxious, depressed,etc...

Gabriela

[Queener]

I can't imagine he "mis-diagnosed" you without a blood test???

[gaby]

[They did every kind of test, went to every Dr. there....I was at the Kahler hotel for 1 month and a half.... Spent like 70 thousand dollars for everything...in the end they did a bartholym cyst removal and even ended in the psycologist because they said I was depressed.... I exepected something more for what I paid for

gabriela