Hi Kel!
I also had a negative celiac blood test, as did others here. However, my stool test was positive, and I can tell you I am extremely sensitive to gluten. Although some here have the actual genes for celiac, others have genes that are identified with a "different" form of gluten sensitivity, and there is no difference in the clinical presentation. A very good article by Dr. Fine explains all of this - it's on his website:
www.finerhealth.com
It's the latest article - something about "before the villi are gone".
Many of us here can claim ancestry from the British Isles and Europe, where the hunter-gatherers lived. The theory is that those of us with that ancestry have not yet developed full genetic capability to digest grains and milk products - since these were not typical items in the H-G diet like they were in the diet of people who stayed in one place and farmed.
The good news is that, if you have gluten sensitivity, you can put yourself in remission without any help from your doc!
Love,
Polly
P.S. I am the poster child for dental problems! My ancestry is 1/4 Irish, 1/4 English, 1/4 Scotch, with the rest being German and French. Pure HG genes!
Received letter from GI's office today
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Rick has had the same trouble with Dr's and a diagnosis of "severe IBS" also, and we have been through 7 Doc's with the same outcome. Just keep trying, we are sending good thoughts you way that you, like us, will finally solve this mystery of what is going on. Have you tried Enterolab yet? We are waiting from results from them, and our new Dr put Rick on Entocort after I sent her all the info on MC. At least the new doc has decided that IBS may not be his trouble, and she wasn't offended that we don't think her diagnosis was correct. Thank God for opened minded doc's without a deity complex... 
Carrie
Carrie
Carrie wrote:Thank God for opened minded doc's without a deity complex...
You said a mouthful there.So how is Rick doing on the Entocort. Any signs so far?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Kellyerin222
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Polly: Thank you for your post and link to the article (going to read it next). I never knew there was a stool test you could take for Celiac Disease and I am sure if I ask this new physican (see her on Fri this week) if we can retake some of these tests to just be sure, she would not have a problem. That is interesting about CD and heritage, but it does make since. I am going to look into CD some more, when my blood test was negative I just took it at face value and did not look into it anymore.
The dental problems I have had the past two years has been horrible. I am not one to have "perfect" teeth- did get all veneers on my top for cosmetic reasons. During this past two years there was 2x that I was eating (and it was not a hard food such as an apple) and all the sudden my molar would just crack and break off-- no joke. I brush 2x a day, maybe do not floss everyday as I should, but certainly not one to ignore my oral health. Then in Jan I got the worst tooth ache imagineable and went to the ER because of it (it was a weekend). Was in the dentist two days later thinking I would only get 1 molar extracted and he did x-rays and found out I had abscesses that ran alongside my left and right lower jaw line-- sent me to an oral surgeon to get 5 teeth surgically extracted (boy was that a shock).
Carrie: I have not tried Enterolab. That is wonderful that his last physcian did not get a complex when you stated you did not think IBS diagnosis was right-- those are the great Doc's out there. Whenever I have tried to state I don't think a diagnosis is correct, you can tell their personal egos kick in. True-- I do not have an MD and have not been through 7+ years of college to qualify myself as one, but I do think if one does enough research, talks to many people and knows their own body that should count for something.
Thanks for your great suggestions everyone-- going to do some more researching.
The dental problems I have had the past two years has been horrible. I am not one to have "perfect" teeth- did get all veneers on my top for cosmetic reasons. During this past two years there was 2x that I was eating (and it was not a hard food such as an apple) and all the sudden my molar would just crack and break off-- no joke. I brush 2x a day, maybe do not floss everyday as I should, but certainly not one to ignore my oral health. Then in Jan I got the worst tooth ache imagineable and went to the ER because of it (it was a weekend). Was in the dentist two days later thinking I would only get 1 molar extracted and he did x-rays and found out I had abscesses that ran alongside my left and right lower jaw line-- sent me to an oral surgeon to get 5 teeth surgically extracted (boy was that a shock).
Carrie: I have not tried Enterolab. That is wonderful that his last physcian did not get a complex when you stated you did not think IBS diagnosis was right-- those are the great Doc's out there. Whenever I have tried to state I don't think a diagnosis is correct, you can tell their personal egos kick in. True-- I do not have an MD and have not been through 7+ years of college to qualify myself as one, but I do think if one does enough research, talks to many people and knows their own body that should count for something.
Thanks for your great suggestions everyone-- going to do some more researching.
Currently waiting results to see exact problem.
Kelly,
Technically, it's not possible to diagnose celiac sprue by means of a stool test. What you can do is discover gluten sensitivity with a much higher degree of accuracy, and a fecal fat score over 300 indicates small intestional damage. Medical protocol, however, requires that a diagnosis of celiac disease be based on a positive result to at least one of the classic blood tests for antibodies, (either gliadin antibodies, or tissue transglutaminase antibodies), and measurable villous atrophy as determined from biopsies of the small intestine.
Of course, if one is gluten sensitive, meeting the classical criteria for a diagnosis of celiac disease becomes sort of a moot question, as far as the patient is concerned, but most doctors get hung up on the aesthetics of a "proper" diagnosis. LOL.
Yep, for a few years I had the same problem with teeth splitting/breaking at the drop of a hat. That's probably a side effect of a serious malabsorption problem that can accompany chronic MC reactions, especially if gluten sensitivity is a factor.
Tex
Technically, it's not possible to diagnose celiac sprue by means of a stool test. What you can do is discover gluten sensitivity with a much higher degree of accuracy, and a fecal fat score over 300 indicates small intestional damage. Medical protocol, however, requires that a diagnosis of celiac disease be based on a positive result to at least one of the classic blood tests for antibodies, (either gliadin antibodies, or tissue transglutaminase antibodies), and measurable villous atrophy as determined from biopsies of the small intestine.
Of course, if one is gluten sensitive, meeting the classical criteria for a diagnosis of celiac disease becomes sort of a moot question, as far as the patient is concerned, but most doctors get hung up on the aesthetics of a "proper" diagnosis. LOL.
Yep, for a few years I had the same problem with teeth splitting/breaking at the drop of a hat. That's probably a side effect of a serious malabsorption problem that can accompany chronic MC reactions, especially if gluten sensitivity is a factor.
Tex
Hang in there Kelly.....we are pulling for you. 
Tex: Rick has not noticed any help from the Entocort yet, but he had to drop down to 6 mgs SID for the first week because of terrible migraines as a side effect. He just started the full 9 mg SID dose on Saturday, so we are hoping to see some effects soon. Our doc gave him 6 refills on it, so at least we don't have to fight tooth and nail to get more if it works. I feel lucky that Dr. Laura trusted the info that you all armed me with to get Rick started on it. Yeah for doc's with no ego problems, my hope is that everyone finds one in there life like that, because there are to many that consider themselves Medical Deities ( that's what the M.D. stands for, ya know )
Carrie
Tex: Rick has not noticed any help from the Entocort yet, but he had to drop down to 6 mgs SID for the first week because of terrible migraines as a side effect. He just started the full 9 mg SID dose on Saturday, so we are hoping to see some effects soon. Our doc gave him 6 refills on it, so at least we don't have to fight tooth and nail to get more if it works. I feel lucky that Dr. Laura trusted the info that you all armed me with to get Rick started on it. Yeah for doc's with no ego problems, my hope is that everyone finds one in there life like that, because there are to many that consider themselves Medical Deities ( that's what the M.D. stands for, ya know )
Carrie
Hi again Kel!
I think you're wise to pursue the stool test for gluten sensitivity. The only place I know of that does it is Dr. Fine's lab (Enterolab) in TX. That's where we all had it done. It's easy - they send you a kit with everything you need and you return the stool sample by prepaid courier. If your doc approves it, your insurance may pay for it - otherwise it may have to be out-of-pocket.
You can find Enterolab at Dr. Fine's website as noted above. You can also get a cheek swab to see if you have genes for celiac/gluten sensitivity, if interested, as well as stool tests for other sensitivities like dairy, eggs, yeast, etc. The fecal fat test that Tex mentioned is a good idea, too, to see if the gluten has caused any damage leading to malabsorption.
Since most docs know little to nothing about the association of MC and gluten sensitivity, you may wish to take a copy of that article I mentioned above to her on Fri.. Also, a list of the tests available in the lab.
Good luck!
Love,
Polly
P.S. Celiac disease (and I'm sure gluten sensitivity as well) can cause "soft" teeth i.e. poor enamel development. I actually have pitting on some of my teeth, which shows that I have had always poor mineralization (enamel) development. Too bad about your dental problems - I can really empathize. Hopefully it's all behind you.
I think you're wise to pursue the stool test for gluten sensitivity. The only place I know of that does it is Dr. Fine's lab (Enterolab) in TX. That's where we all had it done. It's easy - they send you a kit with everything you need and you return the stool sample by prepaid courier. If your doc approves it, your insurance may pay for it - otherwise it may have to be out-of-pocket.
You can find Enterolab at Dr. Fine's website as noted above. You can also get a cheek swab to see if you have genes for celiac/gluten sensitivity, if interested, as well as stool tests for other sensitivities like dairy, eggs, yeast, etc. The fecal fat test that Tex mentioned is a good idea, too, to see if the gluten has caused any damage leading to malabsorption.
Since most docs know little to nothing about the association of MC and gluten sensitivity, you may wish to take a copy of that article I mentioned above to her on Fri.. Also, a list of the tests available in the lab.
Good luck!
Love,
Polly
P.S. Celiac disease (and I'm sure gluten sensitivity as well) can cause "soft" teeth i.e. poor enamel development. I actually have pitting on some of my teeth, which shows that I have had always poor mineralization (enamel) development. Too bad about your dental problems - I can really empathize. Hopefully it's all behind you.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Kellyerin222
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Polly-- I checked out Dr. Fine's website and in the next few weeks when I get the money I am going to order the testing for this to check it out and see. Right now I am willing to try anything to check this out and see exactly what is going on. Thank you for the link to the website 
It is early, but I have already drank 32 ounces of water and already dressed to go and hop on the treadmill and exercise.
Then will sit and do my Jon Zabat Zinn meditation cd and get ready for the day. Really trying to stick with my lifestyle change and make this work for better health.
Kel
It is early, but I have already drank 32 ounces of water and already dressed to go and hop on the treadmill and exercise.
Then will sit and do my Jon Zabat Zinn meditation cd and get ready for the day. Really trying to stick with my lifestyle change and make this work for better health.
Kel
Currently waiting results to see exact problem.