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What To Expect At The Mayo And Other ?'s

geminigal

By geminigal
in Doctors

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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...
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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

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    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
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      By trents · Posted

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    • Ello
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      By Ello · Posted

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      Welcome to the celic.com community @Ello! You say you had a blood test for celiac disease after eating gluten for 2 weeks. Were you gluten free before that? Had you ever been officially diagnosed with celiac disease previously? You say the result of the blood test was 1.5. Can you provide the name of the test and the reference range for negative vs. positive for the test? I ask because different labs used different reference ranges so scores without a reference range aren't very helpful.
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