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Myrna

First Visit To The Gi Doc...

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I visited the GI doc for the first time today. I have to say I'm a little confused.

To begin I have blood tested negative to Celiac. Also, my blood looks good, no anemia, thyroid problems, etc.

My regular doctor said that blood test can be inaccurate and has a patient that test neg blood, pos biopsy. So she referred me to a GI doc to continue to check out Celiac or whatever else is giving me chronic D, gas, bloating, burning stomach etc. She said too that the fact that I hadn't been eating well before the test might have caused it to be negative.

So I saw the GI doc and he says I have GERD and is going to get me a colonoscopy and check for colitis and giardiasis. And if that all checks out okay then possibly say I have IBS. He said my blood test says negative so I definitely DON'T have Celiac. I guess my reg doc did a good full panel test for Celiac, so he said it's 99% accurate. He said the old test might be inaccurate, but not the new.

I'm just confused about the discrepancy between the 2 docs. I tried to tell him what my reg doc said, but he just cut me off and said I couldn't possibly have Celiac. He did say I might be carbohydrate intolerant. I've never heard of it before. He said it was probably the reason for the bloating & gas. He said it was a problem digesting bread, pasta, and rice, then I said I don't have a problem eating rice. Then he sort of retracted and said it was mainly just wheat in pasta and bread.

I'm confused about the accuracy of the blood test, is the GI doc right or my Reg doc? Is the "new" test really that accurate?

Does anyone know about carbohydrate intolerance? Is there a test for this (the GI doc didn't mention it, I didn't think to ask)?

Also, this is a little aside, but the GI doc didn't know what my appendix scar was. And when I told him, he seemed confused and said the appendix was on the other side (but the surgeon needed to make 3 incisions, one of them being on the "wrong" side) I guess it just made me doubt this doc's knowledge a bit- shouldn't a GI doc know the basics about how an appendix is taken out?

Sorry if this is long. Doctors and this whole medical stuff is very confusing, and I'm very new to all this. Thanks in advance!

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I visited the GI doc for the first time today. I have to say I'm a little confused.

To begin I have blood tested negative to Celiac. Also, my blood looks good, no anemia, thyroid problems, etc.

My regular doctor said that blood test can be inaccurate and has a patient that test neg blood, pos biopsy. So she referred me to a GI doc to continue to check out Celiac or whatever else is giving me chronic D, gas, bloating, burning stomach etc. She said too that the fact that I hadn't been eating well before the test might have caused it to be negative.

So I saw the GI doc and he says I have GERD and is going to get me a colonoscopy and check for colitis and giardiasis. And if that all checks out okay then possibly say I have IBS. He said my blood test says negative so I definitely DON'T have Celiac. I guess my reg doc did a good full panel test for Celiac, so he said it's 99% accurate. He said the old test might be inaccurate, but not the new.

I'm just confused about the discrepancy between the 2 docs. I tried to tell him what my reg doc said, but he just cut me off and said I couldn't possibly have Celiac. He did say I might be carbohydrate intolerant. I've never heard of it before. He said it was probably the reason for the bloating & gas. He said it was a problem digesting bread, pasta, and rice, then I said I don't have a problem eating rice. Then he sort of retracted and said it was mainly just wheat in pasta and bread.

I'm confused about the accuracy of the blood test, is the GI doc right or my Reg doc? Is the "new" test really that accurate?

Does anyone know about carbohydrate intolerance? Is there a test for this (the GI doc didn't mention it, I didn't think to ask)?

Also, this is a little aside, but the GI doc didn't know what my appendix scar was. And when I told him, he seemed confused and said the appendix was on the other side (but the surgeon needed to make 3 incisions, one of them being on the "wrong" side) I guess it just made me doubt this doc's knowledge a bit- shouldn't a GI doc know the basics about how an appendix is taken out?

Sorry if this is long. Doctors and this whole medical stuff is very confusing, and I'm very new to all this. Thanks in advance!

If I were you I'd probably try to see a different GI. My Dr. told me that 30% of patients with bloodtest tested negative though they still had celiac disease.

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Do you have your blood tests? I was also negative...the tests re pretty inaccurate for a number of reasons. If you had your results, you could post them here.

I agree, I would maybe try to find another doctor. The first one I went to was not so good. So, I was referred to another one and he is wonderful. Definitely worth a look.


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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Those blood tests are very accurate in a way. If they are positive, they are just that, positive. There are virtually no false positives (that is were the 99% accuracy comes from). But there are TONS of false negatives! A negative blood test for celiac disease can NEVER rule out celiac disease, just as a negative biopsy can't rule it out, because those biopsies are hit and miss, and it is easy to miss the damaged spots in the intestine.

That GI is a moron. Find a new one. If he still 'diagnoses' people with IBS, that confirms that he doesn't know what he is talking about. IBS is a bunch of symptoms which have a CAUSE. If your bowel is irritated, something is obviously irritating it. You need to find out what it is, so you can eliminate it and get well.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Do you have your blood tests? I was also negative...the tests re pretty inaccurate for a number of reasons. If you had your results, you could post them here.

I agree, I would maybe try to find another doctor. The first one I went to was not so good. So, I was referred to another one and he is wonderful. Definitely worth a look.

Hey, Liz! Can you pm me the name of your doc you like so much. I live right around the corner from where you said he/she was and I'm kinda anticipating a change.

I would have thought mine would have warned about the lactose intolerance...but he didn't. I mean..they ARE the same villi. I just want a doc who is up on things.

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Thanks! That was my understanding that false negatives are common. It seems he wants to diagnose me with a variety of diseases (GERD, IBS, Carb Intolerance) that all seem to be tied to celiac, but not say it's celiac because of one blood test. I know I don't have a degree in medicine and I don't know if I do have celiac or a food intolerance, but a lot of the gi symptoms really fit celiac sprue.

Oh, also I forgot to mention, I thought it was odd he said celiac sprue is an allergy. From everything I've read so far says its not an allergy, but an autoimmune disease. I thought that was a whole other thing, right?

It's all so frustrating. I'm almost positive my problems are dietary in some way, at the very least, related to wheat. I would like to just start on the diet and feel better (like my 5day non-gluten test run), but I really want a diagnoses. I guess I'm tired of feeling sick and waiting for doctor appointments and tests! It's taken 7 weeks just to see this guy and another 11 days to get the colonoscopy. (sorry a little venting here!)

I think I'll be calling my regular doc tomorrow to ask a few questions and see what she has to say too.

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Thanks! That was my understanding that false negatives are common. It seems he wants to diagnose me with a variety of diseases (GERD, IBS, Carb Intolerance) that all seem to be tied to celiac, but not say it's celiac because of one blood test. I know I don't have a degree in medicine and I don't know if I do have celiac or a food intolerance, but a lot of the gi symptoms really fit celiac sprue.

Oh, also I forgot to mention, I thought it was odd he said celiac sprue is an allergy. From everything I've read so far says its not an allergy, but an autoimmune disease. I thought that was a whole other thing, right?

It's all so frustrating. I'm almost positive my problems are dietary in some way, at the very least, related to wheat. I would like to just start on the diet and feel better (like my 5day non-gluten test run), but I really want a diagnoses. I guess I'm tired of feeling sick and waiting for doctor appointments and tests! It's taken 7 weeks just to see this guy and another 11 days to get the colonoscopy. (sorry a little venting here!)

I think I'll be calling my regular doc tomorrow to ask a few questions and see what she has to say too.

You REALLY need to find another GI. He is not even considering celiac, if he was he would do a endo along with the colonoscopy. This one is clueless and IMHO all you are going to get from him are big bills and lots of scripts.


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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I wouldnt let that GI doctor stick anything up/down ANY of my orafices. :o

You should look for a new one. Im wondering if he was young and right out of med school.......Or VERY OLD and "set in his ways".

I tested NEG on blood but POS to the diet.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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I called my regular doctor today and got another referral. I tried asking for a doc with more experience with Celiac, but she said there wasn't one in the area. Hopefully the next one will at least consider an endoscopy.

I did see a nutritionist today for my hypoglycemia, but mentioned my symptoms and what the GI doc had said. She said it sounded a lot like celiac and couldn't believe he wouldn't do the biopsy. She, of course, also said to get another doc.

ShayFL: LOL! He was about 45 years old. Funny you say that! When I first saw him, my first impression was he looks like he should be up on the whole celiac thing. He doesn't look that old or old school. That was before he spoke. :)

Thanks all again for the advice, it's reassuring hearing it.

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