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Very Overwhelmed

chorowitz

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chorowitz Newbie
chorowitz
Posted

I've had fibromyalgia since 1997; IBS since 1978. It is getting worse and my MD has suggested that there could be a gluten intolerance issue going on. She has me starting totally a gluten free diet to see if it makes a difference before we start running a bunch of invasive tests. This is very overwhelming. After roaming around this site a bit I can't believe all the foods that have gluten. I went out to lunch this afternoon and had a ceasar salad with no croutons and tomato soup, thinking I was doing a good job. I now know those still weren't very good choices. Where do I start?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. Where you start is by calling the doctor's office and asking to pick up a lab slip for the celiac panel. You do not want to go gluten free before testing as if the diet helps you would then need to go back on gluten for a couple of months before any testing. That can be very painful and make you feel even sicker than you were before you went gluten free.

If you then want an endoscopy you would need to keep on gluten until that is done.

If you can stay strictly gluten free for life without a firm diagnosis then go ahead and go gluten free without testing.

When you start the diet you want to avoid restaurants for a bit and go with whole naturally gluten free foods. Fresh meats, chicken, fish, beans, eggs, veggies and fruits are all naturally gluten free and will help you heal the fastest. You do want to drop dairy also at first then add it back in after you heal.

Cara in Boston Enthusiast
Cara in Boston
Posted

Honestly, I would start by getting a new, better informed doctor. To suggest a GFD before testing is just WRONG, WRONG, WRONG. You need to be tested first (blood tests are not invasive) and depending on those results you can decide on further testing or just give the diet a try to see if it helps your symptoms. If you go on the diet first, all future testing will not show gluten intolerance - even if you have it. You will have to go back to eating gluten - which may be hard because if it is a problem for you, your reaction could be worse after being gluten free. Plus, who wants to go back to feeling crappy after finally feeling healthy? You would have to go 3-6 months to even try to get an accurate test - doctors don't really even know how long you need to be eating gluten.

Get the test first - be patient. It is so tempting to just try it, especially if there is a chance to feel better quickly. Test first, then try the diet.

Cara

chorowitz Newbie
chorowitz
Posted
  • Author

Thanks!!!!

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