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lizard00

Second Gi Appt

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All I can say is that I have had a rockin day!!! I went to see a different GI today and he was GREAT!!! So, if anyone out there in Raleigh,Durham, Cary area need a good doc, he's the one. When I had my blood test done, I was gluten-free for a month. On top of that, my IgA is pretty low. So, the first thing he says when he comes in is that my Celiac panel was worthless and means nothing to him because of the IgA. That was a good start.

He initially wanted me to eat gluten for a month to do an endo, but I wasn't up for that. So as quickly as he said it, he said, OR we can do a DNA test and go from there. He explained why it was important for him to know, as Celiac are at higher risks for different cancers. Then he said, but if you turn out not to have, you are obviously wheat intolerant, and the diet would pretty much be the same, as we both agree that barley and rye are not quite as everywhere as wheat. He also told me that I am probably lactose intolerant, as it can develop at any age. He ordered a genetic test, gave me a months worth of probiotics, and rescheduled a follow up in Aug.

He was up on all of the latest info, and was describing how many different conditions are being linked to Celiac and how celiac is really a hidden problem because many people don't manifest with GI symptoms.

So everyone out there, good doctors exist. It may take a few tries though before you find one.


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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It sounds like he is a good doctor and I am glad it was a good experience for you. Please make sure he is up to date on the 7 genes that have recently been linked to celiac other than just the DQ2 or DQ8. The reason I say this is because I had one child who was gene tested and the doc told her that her celiac diagnosis was false because she doesnt have one of those 2 genes. I don't either but I was still a full blown celiac close to dying by the time I was diagnosed. There is a lot to still be learned in the field of genetics about folks like us.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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What doctor did you see? I have been to see 2 different GI doctors in Raleigh and was very unsatisfied with each. Also, does anyone know of any good nutritionist in the Raleigh area? I've always just educated myself but would like to go see one.

Thanks :)

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I went to see Dr Stephen Furs in Cary. I saw one in Raleigh and I wasn't impressed with him at all. He basically told me that I messed up my digestion when I did the Atkins diet... wonder if it was the same group you saw?

I have not used a nutritionist, but I know there is one on Blue Ridge Rd. It's like a whole body place, with a gym, doctors and a nutritionist to help you lose weight. So, I'm not sure if that would help you or not. It would be worth a phone call anyway.

Oh and welcome to the forum!!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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From what I have been told, there is one dietitian in this part of the state that "specializes" in celiac disease, and she works for the Ped. GI's at Duke. I don't know if she's available for private consultation though.

Lizard, I'm glad you've found a good GI. I'm still debating on what to do about myself, I'm very torn right now.


Blessings,

Amy, mama to 3 awesome boys!

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Lizard, I'm glad you've found a good GI. I'm still debating on what to do about myself, I'm very torn right now.

I was really happy to have found him, too. We've been pretty fortunate here, I've come across two doctors that I didn't like, but I am really happy with my GP and my new GI. I was torn too, but my GP wanted me to go and I really like her, so I went. It turned out to be a good thing. Are you gluten-free too, or just your son? Do have Celiac or think you do?


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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I was really happy to have found him, too. We've been pretty fortunate here, I've come across two doctors that I didn't like, but I am really happy with my GP and my new GI. I was torn too, but my GP wanted me to go and I really like her, so I went. It turned out to be a good thing. Are you gluten-free too, or just your son? Do have Celiac or think you do?

My son is diagnosed celiac, and since we know it came from somewhere genetically, we did determine to have the entire family tested via blood test. However, our insurance sucks and we're just plain out of $ right now, so the genetic testing and anything further than that simply can't be done. Since I've lived a lifetime with mild "sensitive stomach" issues (gas, glurgly feelings, feeling overfull after reasonable meals, etc., I've never had a problem with the big "D" though), I decided I would go ahead and get the basic blood work done, and it came back negative, but they did not do the EMA or total IGA, so I'm not sure if it's worthless or not, shrug. I'm considering going totally gluten free with my son, as I've noticed that since he went gluten-free and by default the entire family's gluten consumption was significantly reduced (I also order gluten-free at restaurants with him, he feels better if he isn't singled out, he's only 7), I have less issues with gas, heartburn, and that gurgly feeling I always used to get at night. I also just feel better all around, but I don't know how much of that is psychological relief at finally having an answer for my son.

So to answer your question, I'm mostly gluten free, though I will admit to having cheated a time or two, it's hard when you don't know for sure, at least for me it is. As for whether or not I think I have celiac, I honestly don't know. If you had asked me 2 months ago, I would have insisted that the celiac genes in my son must have come from my husband's side of the family, as they all have histories of GI issues, including IBS. My husband, however, says he is fine, so who knows. And now that I know that I do feel better with at least a minimum of gluten in my diet, I'm not so certain that there's not something going on.


Blessings,

Amy, mama to 3 awesome boys!

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I can see your dilemma. I went gluten-free before I even realized that I had screwed up my chances at having a positive blood test, although with my IgA, it wouldn't have mattered. They didn't run an EMA on me either, apparently it costs more and so the doc has to specify that they want it. Six months ago, I was convinced that I couldn't have Celiac, it was only a sensitivity, and so I could still splurge here and there. Now, I am pretty convinced it's the other way around.

If you have noticed that a lifetime's problem is diminishing, you may be on to something. And maybe down the road you can have the genetic test. My GP wouldn't do it because she said insurance wouldn't pay for it if she did. Because it's a GI disease, a GI must order it. I HATE insurance companies!!!!!! So he ordered it, but as of yet, I am unsure what sort of bill I may be hit with. :angry:

Part of my wanting to know is that I have a 3 yr old son, and I felt it was important for me to know if I should look for signs in him. Right now, he seems fine. But who knows about next year, so I just wanted to know if I even had a Celiac gene that he could have and need to be aware of down the line. But I had pretty much given up on a dx because my GP had my negative bloodwork, and that was that. And I went to a bad GI earlier this year, so I was pretty much done. Sometimes, things have a way of working out.

I don't know how long it's been since your son's diagnosis (sounds pretty recent though), but maybe once you get into the groove with him, you can focus on yourself. It's a huge change, one that comes quickly and the adjustment can be rough, especially for a child.

But keep Dr Furs in mind if you find yourself ready to go. He's really great, and doesn't discount at all finding these things on your own. At least with me, he didn't.

I wish you the best and I hope your son is doing better since his dx.


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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