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Anyone know of any? I have one but might look for a 2nd opinion in the future...
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gluten-free/celiac Gi Specialist In Santa Fe
or Los Alamos, NM?
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#1
luciddream928 
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Posted 03 December 2008 - 06:50 AM
gluten-free since Aug. '08
Went gluten-free after high fat score results from Enterolab (291).
No celiac gene but two DQ1 genes.
Scope tests both normal, biopsies for celiac and Crohn's normal (on gluten-free diet).
HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0502
Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)
Went gluten-free after high fat score results from Enterolab (291).
No celiac gene but two DQ1 genes.
Scope tests both normal, biopsies for celiac and Crohn's normal (on gluten-free diet).
HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0502
Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)
#2
Tequila
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Posted 23 January 2009 - 09:13 AM
luciddream928, on Dec 3 2008, 08:50 AM, said:
Anyone know of any? I have one but might look for a 2nd opinion in the future...
I don't know of any specialists. They know about it at the GI place, but I had a lot of questions they couldn't answer. I was diagnosed by blood test by my dr, but I wanted to get an endoscopy, I just waited too long and it was negative. What kind of help are you looking for?
#3
luciddream928
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Posted 23 January 2009 - 05:42 PM
Tequila, on Jan 23 2009, 10:13 AM, said:
I don't know of any specialists. They know about it at the GI place, but I had a lot of questions they couldn't answer. I was diagnosed by blood test by my dr, but I wanted to get an endoscopy, I just waited too long and it was negative. What kind of help are you looking for?
Wow, thanks so much for the reply - I posted this months ago. Since that post, I've had a colonoscopy/endoscopy/2 biopsies, all normal (but that was on a gluten-free diet for 6 months, which I asked about, and they said "Diet doesn't matter.").
I'm not sure if gluten is my problem anymore, they're saying it's IBS, but I've read in the research that gluten is related to IBS, IBD, etc. I've cut out all dairy as well, and that has helped a lot. I feel like the gluten diet helped to mitigate the symptoms (especially irritability and depression, sleeplessness and constant fatigue), and stopping dairy practically eliminated them. But I'm still not 100%.
I'm looking for a specialist who can close the gap between the conflicting information I've been told. Everyone on this forum who has responded insists that diet does matter, and so did my acupuncturist, but then I went to a reputable GI in Los Alamos and he says it doesn't matter with Prometheus blood tests because they test for an enzyme in your blood.
I wouldn't be so conflicted if I could just trust that the enterolab results were correct (see my signature).
Thank you for the response. Are you celiac or gluten intolerant?
gluten-free since Aug. '08
Went gluten-free after high fat score results from Enterolab (291).
No celiac gene but two DQ1 genes.
Scope tests both normal, biopsies for celiac and Crohn's normal (on gluten-free diet).
HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0502
Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)
Went gluten-free after high fat score results from Enterolab (291).
No celiac gene but two DQ1 genes.
Scope tests both normal, biopsies for celiac and Crohn's normal (on gluten-free diet).
HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0502
Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)
#4
Tequila
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Posted 26 January 2009 - 10:47 AM
luciddream928, on Jan 23 2009, 07:42 PM, said:
Wow, thanks so much for the reply - I posted this months ago. Since that post, I've had a colonoscopy/endoscopy/2 biopsies, all normal (but that was on a gluten-free diet for 6 months, which I asked about, and they said "Diet doesn't matter.").
I'm not sure if gluten is my problem anymore, they're saying it's IBS, but I've read in the research that gluten is related to IBS, IBD, etc. I've cut out all dairy as well, and that has helped a lot. I feel like the gluten diet helped to mitigate the symptoms (especially irritability and depression, sleeplessness and constant fatigue), and stopping dairy practically eliminated them. But I'm still not 100%.
I'm looking for a specialist who can close the gap between the conflicting information I've been told. Everyone on this forum who has responded insists that diet does matter, and so did my acupuncturist, but then I went to a reputable GI in Los Alamos and he says it doesn't matter with Prometheus blood tests because they test for an enzyme in your blood.
I wouldn't be so conflicted if I could just trust that the enterolab results were correct (see my signature).
Thank you for the response. Are you celiac or gluten intolerant?
I'm not sure if gluten is my problem anymore, they're saying it's IBS, but I've read in the research that gluten is related to IBS, IBD, etc. I've cut out all dairy as well, and that has helped a lot. I feel like the gluten diet helped to mitigate the symptoms (especially irritability and depression, sleeplessness and constant fatigue), and stopping dairy practically eliminated them. But I'm still not 100%.
I'm looking for a specialist who can close the gap between the conflicting information I've been told. Everyone on this forum who has responded insists that diet does matter, and so did my acupuncturist, but then I went to a reputable GI in Los Alamos and he says it doesn't matter with Prometheus blood tests because they test for an enzyme in your blood.
I wouldn't be so conflicted if I could just trust that the enterolab results were correct (see my signature).
Thank you for the response. Are you celiac or gluten intolerant?
I'm Celiac, runs in the family so it wasn't really a surprise when it started, and since I knew about it I was diagnosed in about a week and therefore hopefully hadn't suffered too much damage like my mother and grandmother had. I don't at all look like I'm malnourished
It would have been nice to lose atleast a few pounds. I am also lactose intolerant. It took a while to figure that out exactly, but for me I can have dairy as long as its lactose free. I'm not sure why the drs said diet didn't matter. 6 months should be enough time to heal for the biopsy. The drs I talked to said if you want the biopsy you should go back on gluten for a few weeks, no thanks. The blood tests are even more sensitive. If you are actively sick the antibodies will have built up but over time they may go below detectable levels. If you get sick again, you should ask for the blood test for the transglutaminase within a week of getting sick. I think it would be hard to be negative in that situation. I think it's hard to diagnose if you have been on the diet for a long time, did your drs sound like they knew what they were talking about?
#5
mrsbks2008
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Posted 20 October 2009 - 07:03 AM
luciddream928, on Dec 3 2008, 07:50 AM, said:
Anyone know of any? I have one but might look for a 2nd opinion in the future...
Did you ever find a specialist in the Santa Fe/Los Alamos area? I was told by a nutritionist that I am gluten intolerant. I've been on a GFCFSF diet for a year now and it seems like I'm getting the "glutened" feeling again from other foods. My nutritionist said I'm not celiac, but now I'm not so sure.
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