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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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      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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    • MicG
      Test interpretations

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      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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