trouble with docs

frohickey

New Member

Joined : Feb 2021

Posts : 1

Posted 2/7/2021 11:17 AM (GMT -7)

Hello, I was just diagnosed with Celiac. I was told by the Cleveland clinic that this is not a good disease and because of my family history my cancer and heart disease chance will raise significantly by about 50 %- you would have to know the history. The doctors where i live say this disease is way overrated and many people get diagnosed and never really have many problems with it. They suggested that steroids would basically fix the problem and follow the diet but not go over board with it. Cleveland said I needed to have a colonoscopy every 2 years and that a lot of people never completely heal and many even on the diet continue to have symptoms. Cleveland told me steroids would help with the inflammation and they could be taken for about a week and nothing long term as there is no cure for this and taking medications especially antibiotics and steroid packs. As for the colonoscopy I was told here that I only need it once every 5 years or so because there is no real evidence that this cause any other problems. Cleveland gave me web sites and studies I am about to look. What is your take on what I have been told and what kind of doctors do you use.
Thanks

straydog

Forum Moderator

Joined : Feb 2003

Posts : 18325

Posted 2/8/2021 9:44 AM (GMT -7)

Hello, it's always so frustrating when we get conflicting information from drs! Which drs will be taking care of you for ongoing care? If it is your local drs & you are confident in their care perhaps that's the avenue to take.

I have very limited knowledge & experience with celiac. My neighbor's daughter went through numerous drs & testing with no real diagnosis. Finally, after a year of being fobbed off she was diagnosed with celiac. She was in high school at the time. In order to go gluten free the entire family went gluten free & it has worked. It's completely changing your eating habits & it's not easy at first. She graduated high school, went to college & will be taking her state test to be a nurse practioner within the next 5 months. She was able to do this by diet. She had some bumps early on by cheating on her diet to test things.

I can't tell by your post your age, if cancer runs in your family or not. I suggest that you enlist the help of a dietician to help with learning about being gluten free. A strict diet will heal your intestine issues.

This forum is very, very slow, perhaps look on Facebook to see if there are any active celiac groups. Take care & good luck.

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