Cry for Help

[Guest guest]

I know I haven't written in a while but I read the messages

everyday. I went to a new GI doc today. He hardly gave me a second

look and said I did not have celiac. My chief complaints was

continued stomach complaints and horrible joint pain and fatigue.

Because I still have these symptoms after being gf since Feb 2003 he

said it was not celiac but IBS and fibromyalga (sp). I had a

positive biopsy and negative blood work (I had been gf for a month

before the blood test but still on gluten at the time of the

biopsy). My primary doc said that if the GI doc would give me a

recommendation to she the rheumatologist she would send me (the

neurologist gave me a recommendation) the GI doc refused.

I am so frustrated that he wants me to go back on a normal diet for

6 weeks! I will probably be dead if I do that ... I was a mess

before my dx. Well, on Aug 6 I see a new primary care doc....I Pray

he listens to me! I am going to hand him my biopsy results and tell

him to prove them wrong... how do you all think I should handle

this? Thank you in advance for hearing me out and for your

support. God Bless you, Joy

[Guest guest]

Hi Joy,

First, let me say how sorry I am that you are going through all this! Nobody should be in the situation you are in right now. Many times the bloodwork can be negative for a multitude of reasons. If you are IgA deficient - your bloodwork may show to be falsely "normal." A "Total serum IgA" would let them know if you were IgA deficient. Most Doctors neglect to run this very important test. Furthermore, if you had started your GF diet, it can be normal because of that as well. On the other hand, biopsy results can be similar in some protein allergies, and other conditions. Both of those should be ruled out appropriately. Your primary care Dr. can send you to a rheumatologist based on your symptoms, and should because of the systemic nature of your symptoms. If you push it, they should send you. Your GI dr. does NOT have the primary responsibility for referring you to other specialists - your Primary care Dr. does. Try to keep a diary of your symptoms - when are they worse, when are they better? etc. Write everything down, and bring it to your appointment. Good luck to you.

Suzie in AZ

Cry for Help

I know I haven't written in a while but I read the messages everyday. I went to a new GI doc today. He hardly gave me a second look and said I did not have celiac. My chief complaints was continued stomach complaints and horrible joint pain and fatigue. Because I still have these symptoms after being gf since Feb 2003 he said it was not celiac but IBS and fibromyalga (sp). I had a positive biopsy and negative blood work (I had been gf for a month before the blood test but still on gluten at the time of the biopsy). My primary doc said that if the GI doc would give me a recommendation to she the rheumatologist she would send me (the neurologist gave me a recommendation) the GI doc refused. I am so frustrated that he wants me to go back on a normal diet for 6 weeks! I will probably be dead if I do that ... I was a mess before my dx. Well, on Aug 6 I see a new primary care doc....I Pray he listens to me! I am going to hand him my biopsy results and tell him to prove them wrong... how do you all think I should handle this? Thank you in advance for hearing me out and for your support. God Bless you, Joy

[Guest guest]

Hi Joy,

First, let me say how sorry I am that you are going through all this! Nobody should be in the situation you are in right now. Many times the bloodwork can be negative for a multitude of reasons. If you are IgA deficient - your bloodwork may show to be falsely "normal." A "Total serum IgA" would let them know if you were IgA deficient. Most Doctors neglect to run this very important test. Furthermore, if you had started your GF diet, it can be normal because of that as well. On the other hand, biopsy results can be similar in some protein allergies, and other conditions. Both of those should be ruled out appropriately. Your primary care Dr. can send you to a rheumatologist based on your symptoms, and should because of the systemic nature of your symptoms. If you push it, they should send you. Your GI dr. does NOT have the primary responsibility for referring you to other specialists - your Primary care Dr. does. Try to keep a diary of your symptoms - when are they worse, when are they better? etc. Write everything down, and bring it to your appointment. Good luck to you.

Suzie in AZ

Cry for Help

I know I haven't written in a while but I read the messages everyday. I went to a new GI doc today. He hardly gave me a second look and said I did not have celiac. My chief complaints was continued stomach complaints and horrible joint pain and fatigue. Because I still have these symptoms after being gf since Feb 2003 he said it was not celiac but IBS and fibromyalga (sp). I had a positive biopsy and negative blood work (I had been gf for a month before the blood test but still on gluten at the time of the biopsy). My primary doc said that if the GI doc would give me a recommendation to she the rheumatologist she would send me (the neurologist gave me a recommendation) the GI doc refused. I am so frustrated that he wants me to go back on a normal diet for 6 weeks! I will probably be dead if I do that ... I was a mess before my dx. Well, on Aug 6 I see a new primary care doc....I Pray he listens to me! I am going to hand him my biopsy results and tell him to prove them wrong... how do you all think I should handle this? Thank you in advance for hearing me out and for your support. God Bless you, Joy

[Guest guest]

Hi Joy,

First, let me say how sorry I am that you are going through all this! Nobody should be in the situation you are in right now. Many times the bloodwork can be negative for a multitude of reasons. If you are IgA deficient - your bloodwork may show to be falsely "normal." A "Total serum IgA" would let them know if you were IgA deficient. Most Doctors neglect to run this very important test. Furthermore, if you had started your GF diet, it can be normal because of that as well. On the other hand, biopsy results can be similar in some protein allergies, and other conditions. Both of those should be ruled out appropriately. Your primary care Dr. can send you to a rheumatologist based on your symptoms, and should because of the systemic nature of your symptoms. If you push it, they should send you. Your GI dr. does NOT have the primary responsibility for referring you to other specialists - your Primary care Dr. does. Try to keep a diary of your symptoms - when are they worse, when are they better? etc. Write everything down, and bring it to your appointment. Good luck to you.

Suzie in AZ

Cry for Help

I know I haven't written in a while but I read the messages everyday. I went to a new GI doc today. He hardly gave me a second look and said I did not have celiac. My chief complaints was continued stomach complaints and horrible joint pain and fatigue. Because I still have these symptoms after being gf since Feb 2003 he said it was not celiac but IBS and fibromyalga (sp). I had a positive biopsy and negative blood work (I had been gf for a month before the blood test but still on gluten at the time of the biopsy). My primary doc said that if the GI doc would give me a recommendation to she the rheumatologist she would send me (the neurologist gave me a recommendation) the GI doc refused. I am so frustrated that he wants me to go back on a normal diet for 6 weeks! I will probably be dead if I do that ... I was a mess before my dx. Well, on Aug 6 I see a new primary care doc....I Pray he listens to me! I am going to hand him my biopsy results and tell him to prove them wrong... how do you all think I should handle this? Thank you in advance for hearing me out and for your support. God Bless you, Joy