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2 Docs 2 Oppions


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4 replies to this topic

#1 heatherh

 
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Posted 27 September 2005 - 07:33 PM

I'm so confused. On friday I got the results of the blood work. They are positive in one area(anti-gliden) and considered within normal range in the others. The tests were preformed by my rhmatologyst(sp). i got the results from my primary care physisian who stated that I tested positive for celiac and needed to go on a glutin-free diet immedeatly. I called the rhmatologyst to get some things clearified, they told me I needed a stomic biopsy.I did resurce on the net and both here and other places said that if a stomic biopsy is needed you must maintain diet so not to skew the results. So I called again on monday, doc wasn't in. Today when I spoke to rhatologysts nurse she asked why I had requested a biopsy(I didn't, they told me I needed one) and told me that there was no way to get me into a gastro-doc before I move....anyway by primary care docs nurse calls me and reads me the consult notes that were faxed to them. She was a bit unsure about it all.They pretty much said that even though the tests show I have a positive factor for celiac, that the she dosen't think I have it and that I should seek futher treatment for my gastrointestanal issues once I get to my new location. In my oppion she made me sound like an ass and has confused the hell out of me. Do I have this...do I not. The primary care nurse told me that in her oppion positive results meen positive and that I do in fact have this problem. My primary care doctor says to try a glutin-free diet and that I should start to feel better within a few weeks. My rhomatologyst has yet to return my calls and when I call she has a nurse speek to me.So I have one doctor (willing to take the time to speek with me over the phone and explain everything, give me hand outs on everything )telling me I have this problem and another doctor despite positive results says I dont. Help me sort thew this.
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#2 Guest_nini_*

 
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Posted 28 September 2005 - 02:59 AM

Dr.s really do not know enough abut Celiac yet, especially if they are not Gastroenterologists... IMHO, you have elevated results therefore you have Celiac... or at the very least a Gluten Intolerance. You can wait for another Dr. to agree with the one Dr. and give you a biopsy and take a chance that they don't take enough samples and miss any potentially damaged areas of intestines. Or, you can take your health into your own hands and try the diet. If you have a positive response to the gluten-free diet, then you will have your answer, Gluten is bad for you. If no improvement after a while, you can go back on gluten and resume testing to find out what is wrong. But I'm willing to bet you that because you have an elevated marker, you will benefit tremendously from a gluten-free diet.
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#3 nettiebeads

 
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Posted 28 September 2005 - 05:47 AM

Dr.s really do not know enough abut Celiac yet, especially if they are not Gastroenterologists... IMHO, you have elevated results therefore you have Celiac... or at the very least a Gluten Intolerance.  Or, you can take your health into your own hands and try the diet. If you have a positive response to the gluten-free diet, then you will have your answer, Gluten is bad for you. If no improvement after a while, you can go back on gluten and resume testing to find out what is wrong. But I'm willing to bet you that because you have an elevated marker, you will benefit tremendously from a gluten-free diet.

<{POST_SNAPBACK}>

I thoroughly agree with nini. You have one positive test, biopsies can be inconclusive and give false negatives. Go with the gluten-free diet, (what have you got to lose?) and see what happens in three weeks. If you do see a lessening of symptoms, then you are on the right track. Although I sure don't envy you going gluten-free while experiencing the stress of moving. Good Luck!
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#4 skbird

 
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Posted 28 September 2005 - 08:42 AM

I can relate. My primary care doc said if avoiding gluten helps, then do it, that's enough for my treatment. He also said I am the most successful on the diet of anyone he's treated. But then I got sent to a rheumatologist because I had an elevated ANA (anti-nuclear antibodies). I liked the rheumy at first, especially because he knew something about gluten, but then, when he couldn't find anything specific fitting his criteria, he blamed all my problems on gluten and told me to get into a gastroenterologist. I could buy this excuse if I was still consuming gluten but at that point I had been gluten free for 8 months. Anyway, I get to go to the gastro tomorrow. I feel like I'm being shipped around everywhere.

I don't need a Celiac diagnosis, personally, because I know I can't tolerate gluten. I am hoping the gastro tomorrow won't be mad at me because I am gluten free (nearly a year now) and that he will look beyond just what has already been discovered. I have noticed docs, when they don't quite know what is up, will glaum on to a prior mystery diagnosis. I am usually careful to not reveal what has been questionably suspected for me when I'm at a new doc because of this.

What's most important is knowing what helps you, not always what the docs speculate about. If they say no, you don't have a gluten problem, but you feel better off gluten, then don't eat it.

Take care

Stephanie
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Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11

#5 skbird

 
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Posted 28 September 2005 - 08:44 AM

I can relate. My primary care doc said if avoiding gluten helps, then do it, that's enough for my treatment. He also said I am the most successful on the diet of anyone he's treated. But then I got sent to a rheumatologist because I had an elevated ANA (anti-nuclear antibodies). I liked the rheumy at first, especially because he knew something about gluten, but then, when he couldn't find anything specific fitting his criteria, he blamed all my problems on gluten and told me to get into a gastroenterologist. I could buy this excuse if I was still consuming gluten but at that point I had been gluten free for 8 months. Anyway, I get to go to the gastro tomorrow. I feel like I'm being shipped around everywhere.

I don't need a Celiac diagnosis, personally, because I know I can't tolerate gluten. I am hoping the gastro tomorrow won't be mad at me because I am gluten free (nearly a year now) and that he will look beyond just what has already been discovered. I have noticed docs, when they don't quite know what is up, will glaum on to a prior mystery diagnosis. I am usually careful to not reveal what has been questionably suspected for me when I'm at a new doc because of this.

What's most important is knowing what helps you, not always what the docs speculate about. If they say no, you don't have a gluten problem, but you feel better off gluten, then don't eat it.

Take care

Stephanie
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Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11




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