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Claire

Would You Believe?

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Today I had an appt. with a GI specialist (new to this area - formerly with NIH). I was uneasy because my GP had written what I considered a prejudicial referral.

I did as I always do when going to a new doctor - I wrote up a case history - not too long but thorough. I filled out the required office forms and then included my history.

He sat down and read it thoroughly and then asked questions. They were good questions and he listened to the answers without interrupting! So far so good!

Praise God - he didn't say I have IBS!. In fact he said he was quite sure I did not have that or colitis or any of the other things you usually get from these guys. He said I was quite right that I don't have symptoms to support any such diagnosis.

I was quite surprised by what came next. He said that in spite of a negative Celiac gene test - it may still be Celiac. He talked about the wide variety of celiac symptoms - from the worst to none at all. He talked about the fact that celiac is only recently studied - that there are celiac genes that have not been clearly identified.

He thought blood tests are iffy - very dependent on the technicians who process the sample. My ataxia of unknown origin also got his attention - as ataxia is often gluten related.

Two tests are scheduled for the end of this month - Colonoscopy and endoscopy. Both tests will be done on the same day. He was very thorough in explaining (though I already knew) that this would in no way address my multiple food intolerance problem. That this was to check that I have no serious inflammation, polyps or malignancy.

He said food intolerances (as opposed to allergies) are really not understood very well - especially the cause. At least he didn't say they don't exist like one doctor told me.

What he said about endoscopy should interest some of you here. I have been on a limited gluten diet for years but gluten-free since August. He said that was no problem as there would not be significant healing in 6 months to negate the test. He said one to two years to heal.

There has been much discussion here on the forum as frustrated newly diagnosed people look for very immediate results from the gluten free diet. While you may feel a lot better the healing process is not a rapid one. He confirmed for me what the doctor at IMMUNO LABS told me when I had my tests done there. He flatly said - two years.

He was also very understanding about the fact that I have failed colonoscopy on earlier attempts. I get sick and wind up with a stomach cleanse but not a colon cleanse! He ordered a prep that has quite a bit of water to drink but no mixtures of stuff. I sure hope I can handle it.

Oh - mustn't forget. I spoke to him about gluten sensitivity. He said as far as he was concerned - that too is Celiac and should be identified that way - and perhaps will be at some time.

End of lengthy report. If you are still with me - thanks for reading all this. Hope it helps somebody. Claire

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Guest Viola

Wow, that was a super check-up. Nice to know there are some out there that are getting educated. Good for you finding him! :D

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Wow, that was a super check-up. Nice to know there are some out there that are getting educated. Good for you finding him! :D

Like I said, "so far so good". I don't want to get overjoyed just yet but at least he is doing and saying the right things at this point. That is on the plus side to be sure. Claire

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Claire what a great post! Wow, this guy sounds great!

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Claire--So happy you found this guy! Thanks for posting about your appt. His answers to your questions and his opinions were interesting, and encouraging. I took note of his '2 year' healing time--could answer why my progress is up and down after 8 months.

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Sounds like a wonderful appointment! How nice to have someone listen to you and take you serioiusly. I have talked about my multiple food intolerances for years without anyone saying much at all....they all blamed it on IBS.

Keep us posted on your progress.

Where are your from and where is your dr?

Today I had an appt. with a GI specialist (new to this area - formerly with NIH). I was uneasy because my GP had written what I considered a prejudicial referral.

I did as I always do when going to a new doctor - I wrote up a case history - not too long but thorough. I filled out the required office forms and then included my history.

He sat down and read it thoroughly and then asked questions. They were good questions and he listened to the answers without interrupting! So far so good!

Praise God - he didn't say I have IBS!. In fact he said he was quite sure I did not have that or colitis or any of the other things you usually get from these guys. He said I was quite right that I don't have symptoms to support any such diagnosis.

I was quite surprised by what came next. He said that in spite of a negative Celiac gene test - it may still be Celiac. He talked about the wide variety of celiac symptoms - from the worst to none at all. He talked about the fact that celiac is only recently studied - that there are celiac genes that have not been clearly identified.

He thought blood tests are iffy - very dependent on the technicians who process the sample. My ataxia of unknown origin also got his attention - as ataxia is often gluten related.

Two tests are scheduled for the end of this month - Colonoscopy and endoscopy. Both tests will be done on the same day. He was very thorough in explaining (though I already knew) that this would in no way address my multiple food intolerance problem. That this was to check that I have no serious inflammation, polyps or malignancy.

He said food intolerances (as opposed to allergies) are really not understood very well - especially the cause. At least he didn't say they don't exist like one doctor told me.

What he said about endoscopy should interest some of you here. I have been on a limited gluten diet for years but gluten-free since August. He said that was no problem as there would not be significant healing in 6 months to negate the test. He said one to two years to heal.

There has been much discussion here on the forum as frustrated newly diagnosed people look for very immediate results from the gluten free diet. While you may feel a lot better the healing process is not a rapid one. He confirmed for me what the doctor at IMMUNO LABS told me when I had my tests done there. He flatly said - two years.

He was also very understanding about the fact that I have failed colonoscopy on earlier attempts. I get sick and wind up with a stomach cleanse but not a colon cleanse! He ordered a prep that has quite a bit of water to drink but no mixtures of stuff. I sure hope I can handle it.

Oh - mustn't forget. I spoke to him about gluten sensitivity. He said as far as he was concerned - that too is Celiac and should be identified that way - and perhaps will be at some time.

End of lengthy report. If you are still with me - thanks for reading all this. Hope it helps somebody. Claire

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Claire, that is awesome. Could you ask him to clone himself and send his clones to Canada. I would like to speak to one sane GI who doesn't roll their eyes at me.

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Claire, that is awesome. Could you ask him to clone himself and send his clones to Canada. I would like to speak to one sane GI who doesn't roll their eyes at me.

Wish I could! It was a good start. Hope it stays this positive. Claire

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Now that's a start for me to think about putting trust back into doctors.. just to think about it for now.

But, seriously, that's a very good start with a new doctor. Maybe there's hope...

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