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Cyndi

Very Confused Please Help

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Recently I had blood work done and a biopsy of the small intestine. The lab called from the biopsy and said it showed that I have early stages of celiac disease. After waiting a month I called doctors office to find out what the rest of my results were and where I go from here.

The nurse called me and told me that because my blood work did not show positive results and the biopsy only shows early stages of celiac disease that it was not nessary to start glutin free diet and they will see me again in 4 years. What about the pain I went to see him for in the first place? If I keep eating glutin won't it get worse and at what stage of the disease do you start a glutin free diet?

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Cyndi,

Welcome to the world celiacs! You have just experienced why so many people are suffering.

Your pain will not hurt your doctor at all. It's like telling someone you only have a little cancer, come back later when it's spread and is worse. Someday doctors will get the education they need on celiac disease. I pray that doctors start developing the disease faster than the rest of the population. (pardon to all drs and medical persons here!)

First go gluten free because of your lab reports, you already have damage and it's still early. So let it repair itself the best it can.

Second, imo, find a doctor that understand celiac disease. Call around until you find someone. Doesn't matter if you have to drive to get to their office.

Third, stay tuned here. You will learn more than most doctors know about celiacs.

Perhaps you can tell the doctor that you think his bill isn't worth your time and effort to pay since it's so small. He can call you in four years.

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Hi Cyndi and welcome,

I just wanted to echo all of the above advice... It may be only the nurse and not the DR providing bad information, try to talk to the DR directly. If you do have celiac disease ("early stages" or not), you should most definitely 100% be on a completely gluten-free diet. It will change your life -- for the better, of course :)

Good luck!

Jillian

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