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

What To Expect At The Mayo And Other ?'s

geminigal

By geminigal
in Doctors

Recommended Posts

GFhopeful Rookie
GFhopeful
Posted

Dr. Murray really emphasized to me that I could have a gluten sensitivity, although I do not have the genes for Celiac. He encouraged me to feel better first and then try gluten and if I feel any raection to get right off of it as there are people out there that do not have Celiac gene but can not handle gluten in their diets. He also wanted me to call him if I found out I was one of these people as he said he wants to know for future reference. Maybe he is running across more people like this. Anyway, that's what I got from my visit from him - no genes but gluten could still be an issue and the diet will tell.

For me, right now I am still having crazy headaches, nausea, and weird symtoms and have been on Gluten-free Casein-free diet since early June. So I really don't know if gluten is the issue but am not feeling well enough to try it out and will remain gluten-free indefinitely for now.

  • 4 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jewels1961 Newbie
jewels1961
Posted
Dr. Murray really emphasized to me that I could have a gluten sensitivity, although I do not have the genes for Celiac. He encouraged me to feel better first and then try gluten and if I feel any raection to get right off of it as there are people out there that do not have Celiac gene but can not handle gluten in their diets. He also wanted me to call him if I found out I was one of these people as he said he wants to know for future reference. Maybe he is running across more people like this. Anyway, that's what I got from my visit from him - no genes but gluten could still be an issue and the diet will tell.

For me, right now I am still having crazy headaches, nausea, and weird symtoms and have been on Gluten-free Casein-free diet since early June. So I really don't know if gluten is the issue but am not feeling well enough to try it out and will remain gluten-free indefinitely for now.

We went up to Mayo twice early last spring looking for answers to my husband's fatigue, depression, etc., sleep tests done, double checked for sleep apnia, tested for narcolepsy etc., also ended up in the psychitrist office, being sent home to say couldn't find anything other than needed to cut down on his drinking. So still owing almost $2000 after insurance had no answer. No blood tests were ever done either. Finally now another year and a half later a heart doctor referred my husband to a GI doctor in Omaha, NE and he has finally been diagnosed with celiac. So much for that reputable place, hounding for payments on the account but yet sending stuff wanting you to donate to their different researches

Jewels

  • 2 weeks later...
California Michael Newbie
California Michael
Posted
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

Archived

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

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


  • Member Statistics

    • Total Members
      127,986
    • Most Online (within 30 mins)
      7,748
    Vickie Clancy
    Newest Member
    Vickie Clancy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

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


  • Upcoming Events

  • Posts

    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...