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

I Don't Get It- How Do I Get An Appointment At Mayo?


munchkinette

Recommended Posts

munchkinette Collaborator

I just called the mayo clinic to see about getting an appointment. I told the lady my issues and she said that fatigue plus gluten intolerance (non-celiac) weren't enough to get an appointment. She said she wasn't allowed to schedule time for that, and that I need a diagnosis.

What the heck? The whole reason I need to go is to GET a diagnosis.


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

I called up a University celiac disease clinic for my sister to see how she could get an appointment. They were very compassionate but said she couldn't make an appointment directly and should see her GP or any other Dr. who would agree and ask for a referral, then she could get one.

AndrewNYC Explorer

Check to see if they have a walk-in ER

I just called the mayo clinic to see about getting an appointment. I told the lady my issues and she said that fatigue plus gluten intolerance (non-celiac) weren't enough to get an appointment. She said she wasn't allowed to schedule time for that, and that I need a diagnosis.

What the heck? The whole reason I need to go is to GET a diagnosis.

Gentleheart Enthusiast

I tried and tried to get them to give me an appointment. They were very nice about it, but turned me down flat because I wasn't classic celiac enough (diarrhea, weight loss, etc.). I wrote a very detailed letter directly to the main doctor and got a nice one back. The bottom line was that they are so busy with classic celiac patients that those of us outside of the box couldn't be seen. They said if my regular doctor was absolutely convinced enough that I had full blown celiac and contacted them himself, they might try to fit me in. But they also said that because I had a negative blood test (after being gluten free for a year), it was highly unlikely that I had celiac anyway. I gave up. I've yet to find any doctor that will pay any attention to me concerning my suspected gluten intolerance. My entire self diagnosis has been based on what my enterolab tests unquestionably said. But no one seems to know what Dr. Fine is even doing these days and no doctor will accept his tests as valid. I have decided I'm on my own.

minnowjoy Rookie

I went to Mayo in Minnesota. If I remember right( this has been around 8 years ago) I had just my regular family dr. make an appt for me. We didn't know what was wrong with me at the time as I had gone to countless specialists in the area and not one of them could figure it out. I think it took around a month for me to get an appt. Now I have my own patient # and whenever I would like to come in I just have to call. But I have found a DR. now in my area who is EXCELLENT with celiac disease!! No more trips to mayo unless I want to.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,851
    • Most Online (within 30 mins)
      7,748

    alison judge
    Newest Member
    alison judge
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • HilaryM
      Thank you Scott - I can’t think of much that’s changed diet wise but I’ll definitely try to see if any of this works and probiotics are a great idea thank you!
    • cristiana
      Hello there @maylynn  I'm a slow healer from the UK.  I sympathise.  Despite three endoscopies which showed nothing wrong, I frequently suffered from a very sore stomach, bloating, feeling queasy.   For some time I was taking the wrong iron supplement (Floradix instead of Floravital - the former has gluten in it, but the latter none).  But I would say even very little iron from an approved source made my stomach sore, I think it can be quite irritating. Perhaps that is an issue for you? Oats (the gluten-free pure ones) were an issue for many years (now fine).   Even though my endoscopy findings did not reflect any problems with healing, or any other issues, I self-diagnosed myself with gastritis as it seemed the feeling of nausea and in my case burning in the stomach pointed to it.  I went onto a gastritis/reflux diet and that really helped.   Have a google - there are tonnes online.  That meant avoiding spicy, greasy food, onions, tomatoes, coffee and alcohol.  (Actually, I don't drink, but I did toast someone during that time at a baptism and it set my stomach on fire.)   Instead of drinking strong coffee, I drank water, camomile tea, warm ginger water... so soothing.  I would not go to bed with a full stomach when things were bad, I would let my stomach rest from say 8pm to 8am, which really helped.   My husband and I then decided to buy a new oven and to buy a new dishwasher - we did need new ones anyway.  The new oven had two compartments, gluten goes in one, gluten free in the other.  The new dishwasher was a Miele which does a full rinse with clean water before washing the dishes.  But before I could afford a new dishwasher I would hand wash the dishes and make sure they were really rinsed well, no residue  (unlike our old dishwasher that was really not rinsing well at all). I stopped eating out for quite a few years - I think this is a biggy - although I would have coffee and soft drinks out. Eventually, my levels normalised.  What of the above was the 'silver bullet'?  I am not sure, but finally I did feel a lot better.  Occasionally I will take an over the counter PPI (omeprazole) or a small dose of Gaviscon, but most of the time I don't need them now. I'm not expecting anyone to go to all these lengths, but it could be that one or two of the tips I give you might work.  Don't give up hope! Cristiana
    • RMJ
      Yes, it would make sense to go mostly gluten free, since it gives your troubles.
    • SMK7
      Yes, I made an effort to eat extra gluten at least 3 weeks before the endoscopy. I probably ate a some amount in the weeks before that. I had diarrhea, which resolved once I cut back after the endoscopy. So I think it would make sense to go mostly gluten free?  
    • RMJ
      Yay for the normal biopsy! Thanks for the follow up. Were you eating gluten prior to the endoscopy?
×
×
  • Create New...