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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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#2
Ahorsesoul 
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Posted 30 September 2009 - 03:28 PM
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.
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.
1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world
#3
JillianLindsay
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Posted 30 September 2009 - 06:15 PM
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
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
gluten-free since July 8, 2009!
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