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First Celiac Appointment In 10 Years

sdsdsm1971

By sdsdsm1971
in Doctors

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sdsdsm1971 Newbie
sdsdsm1971
Posted

I was diagnosed in 1996 and cheated on the diet for 10 years. I have gone completely gluten free since May and finally have an appointment with a celiac specialist in Baltimore. Any advice on things I should ask at the appoinment? I am concerned that I may have done damage cheating for all those years, but I don't know how they will figure that out.

My symptoms have mainly been fatigue and DH, but they have gone away with the diet. Could I have stomach cancer and not know it? How do they test for that?

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ravenwoodglass Mentor
ravenwoodglass
Posted
I was diagnosed in 1996 and cheated on the diet for 10 years. I have gone completely gluten free since May and finally have an appointment with a celiac specialist in Baltimore. Any advice on things I should ask at the appoinment? I am concerned that I may have done damage cheating for all those years, but I don't know how they will figure that out.

My symptoms have mainly been fatigue and DH, but they have gone away with the diet. Could I have stomach cancer and not know it? How do they test for that?

If your symptoms mainly were the DH and fatigue I would not worry too much about the possibility of cancer but the doctor will be the best one to set your mind at ease on that. You want to have them run a celiac panel to make sure your not getting strong CC, and also have them do a B12, ferritin, and folate levels as well as checking your cholesteral, liver function and blood sugar. Also make sure you get copies of your test results. I would suggest since you have been having fatigue that you make sure you take a good gluten-free supplement and also some additional sublingual B12 might be helpful. Just make sure you let your doctor know anything you are taking. Welcome back to the gluten free world, I am glad to hear you are back on the diet. I think you'll be fine as long as you stay with it.

Veronica Rookie
Veronica
Posted

Sooo.....how did your appt go? Good news?!?!

Corkdarrr Enthusiast
Corkdarrr
Posted

How did you go about finding a celiac specialist?

happygirl Collaborator
happygirl
Posted

cluecke-Baltimore (University of Maryland at Baltimore) has one of the leading Celiac specialists, Dr. Alessio Fassano. He runs a Celiac research center. His link is: www.celiaccenter.org

(I don't know who she is seeing, just wanted to add that it might be him or one of his colleagues, since there are very very very few Celiac experts)

sdsdsm1971 Newbie
sdsdsm1971
Posted
  • Author
cluecke-Baltimore (University of Maryland at Baltimore) has one of the leading Celiac specialists, Dr. Alessio Fassano. He runs a Celiac research center. His link is: www.celiaccenter.org

(I don't know who she is seeing, just wanted to add that it might be him or one of his colleagues, since there are very very very few Celiac experts)

Yes, I went to see Dr. Fassano. He was great and has a nery good team. They don't rush you -- I was there for two hours talking to nutritionist, nurses and doctor. I got a bone scan to check for osteoporosis. He says cancer is unlikely.

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