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Old 02-03-2011, 06:39 PM
UTC12 UTC12 is offline
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Default Negative for Celiac

I recently had a olonoscopy and endoscope done, and the doctor took biopsies of my small intestines. I got the results in today, and they tested negative for Celiac, and all other things. I kind of sad about this because we now do not know what is causing the problems I am having. My gallbladder was removed, 2 1/2 years ago, and ever since, I have had horrible biley diarrhea. I would eat something, and almost immediately, I would have to run to the bathroom. My stomach would also "role" and "growl" and my stomach would feel bad afterward for a while. I would have gas and I would be bloated also. The doctor that done the colonoscopy said that I have too much bile in my intestines and he prescribed something to absorb all of the excess bile. Ever since I have been on it, I have not had diarrhea, but I have also been eating lightly. Can a biopsy be negative and you still have celiac. If that is the case, then how do they go about diagnosing it. Can a blood test be positive for Celiac, while a biopsy be negative. If they order a blood test, and it also comes back negative for Celiac, then what could be the problem.
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Old 02-03-2011, 10:13 PM
Zonulin Zonulin is offline
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Hi - Sounds like you've been through a lot! This Mayo Clinic gastroenterologist writes that "1 in 3" people have diarrhea after gall bladder surgery, and that it can last for "years." And that they don't know what causes it http://www.mayoclinic.com/health/gal...emoval/AN00067

The textbook scenario for celiac disease is that it's a rare autoimmune disorder which results in flattened villi of the small intestine, so you sort of starve because your body can't absorb any nutrients. Note that this forum is called ""Gluten Sensitivity/Celiac Disease" because most people who have problems with gluten do NOT have celiac disease. So their test results for celiac disease would be negative, their endoscopy biopsy results would be negative. But they would continue to suffer from gluten-related illnesses such as chronic diarrhea, nausea, other autoimmune diseases (check out this forum plus Dr. Fasano's research, frequently mentioned on this forum) - Dr. Ron Hoggan listed 187 gluten-caused illnesses in his book, Dangerous Grains.

Did the blood testing for celiac include the Antigliadin IgG antibody test? That indicates that your body views gluten as an enemy because it's creating antibodies to "fight" gluten/gliadin. Or you can eat a whole lot of wheat bread and then see how you feel, see if you get diarrhea, headaches, etc.

That's the short answer - look back on this forum a few pages and you will see stories of others suffering as you are. I guess the really short answer (the one that most doctors prefer to give) is that your diarrhea is due to the gall bladder surgery - how interesting that the docs don't seem to know why some people have diarrhea afterwards... Hopefully others here will offer you some advice, too!

Karen
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Old 02-03-2011, 10:43 PM
UTC12 UTC12 is offline
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Thanks for your reply. I have not had a blood test done, but I am thinking about having it done when I go to see my doc on the 21st. I had soup today for supper and still three hours later, my stomach is still "rolling" and I just want to vomit. What other things can I have looked at as possibilities of why I am feeling the way I am. I made some gluten free waffles and I have been eating them every morning. That is the only thing that I am able to eat in the mornings and it not tear my stomach up. I would love to go on a gluten free diet, but it would be really hard and EXPENSIVE!!! I still live with my family and everyone tried the waffles and they do not like them. I do not want to go out and buy separate food for just myself, it would just get to darn expensive. I was actually HOPING that it was Celiac disease so that I have a reason behind why I am feeling the way I am. I just hope that my doctor has some ideas and he not just write me off because of my gallbladder being removed as to the cause. What test could they preform and be able to see that I am gluten sensitive or is there even a test for that?
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Old 02-04-2011, 01:57 AM
Zonulin Zonulin is offline
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Cara, who created this forum, has gathered data regarding diagnostic testing in the Gluten File "sticky" at the top of the threads - here's a shortcut (look under "Diagnostics"): http://braintalkcommunities.org/foru...ead.php?t=1062

I must have misunderstood your first post when you mentioned "blood testing" - if they have not yet ordered a celiac panel test (blood test), make sure they include the Antigliadin IgG antibody test (as I mentioned in my last post) - it is most specific for gluten sensitivity/gluten intolerance. The other testing, including the new deamidated test, is more specific for villous atrophy (aka "flattened villi" caused by celiac). Also, Enterolab uses stool testing to check for problems with gluten - used by many people who don't have celiac disease but know they have a problem with gluten and want proof! Well worth the money, in my opinion. Cara's thread has information on that, too. The trick can be trying to get enough of a "stool" to send in, since my son's "stools" were...more like chocolate sodas.

Kinda outrageous they did an endoscopy without first doing a blood test! Sort of like doing a heart valve replacement before seeing if you have heart disease first.

Karen
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Old 02-04-2011, 07:41 AM
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Ask the doc how many biopsy sites were taken. 10-12 sites are needed for a 'GOOD" test. I know someone who has one CELIAC GENE & one gluten sensitive gene but the biopsy test only showed very mild villi damage after many many years of GLUTEN ABUSE. Tests are only as good as the humans who invent them, so stay off gluten ( and all grains if you can ) for good. Robb Wolf ( author ) states that anybody who has gallbladder issues, has gluten issues. You will find ( over time ) that by NOT GOING GLUTEN-FREE, IT WILL COST YOU A HECK OF A LOT MORE, WHICH THEN CAN BE TRANSLATED INTO TENS OF THOUSANDS OF DOLLARS. Good Luck.
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Old 02-04-2011, 09:07 AM
can can is offline
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Smile Robb Wolf---author

In his book THE PALEO SOLUTION, Robb states " People who have had gallbladder removal are almost certainly undiagnosed Celiacs and likely have a lot of other progressive diseases." Robb is a former research biochemist and is one of the world's leading experts on Paleolithic nutrition.
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Old 02-04-2011, 10:29 AM
UTC12 UTC12 is offline
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Well, they said that a biopsy is a fool proof method to diagnose celiac disease. They said that they normally do a biopsy before they do any bloodwork. They said that a bloodtest can show negative for celiac disease and a biopsy be positive for it. I think that I will ask to have a blood test and to ask him if I could be gluten sensitive instead of positive for celiac disease. My cousin has been having trouble too and he is having another colonoscopy making this his 3rd one in 6 months time. He is going to a different doctor this time, so maybe they can find out something different and therefore be able to straighten me out to.
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Old 02-04-2011, 10:59 AM
Naominjw Naominjw is offline
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Just remember that Celiac is just a subset of gluten-sensitivity. It does not rule out the inflammation and "leaky-gut".

Also, I was told by the doctor that although medically they are not "supposed to" (but can) diagnose Celiac unless they see it on biopsy, a person can have Celiac and it not be seen on biopsy, for instance if the person has not been eating enough gluten before the biopsy to cause significant damage at the time to be seen - and/or they biopsy it in a place the villi are not damaged yet.

The molecules of incompletely digested food can still be getting into the blood stream and wreaking havoc on the immune system without the sub-diagnosis of "Celiac."
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Old 02-05-2011, 10:51 AM
can can is offline
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Smile Biopsy?

Go to www.enterolab.com and check this site out. They perform gluten sensitivity tests that are very accurate. They state that they can get good results even after a person stops eating gluten for around 1 1/2 years. Many people have used their services including me. GOOD LUCK
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  #10  
Old 02-05-2011, 10:54 AM
can can is offline
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Smile

When anyone ( including doctors ) tells you something is FOOL-PROOF, that's the time to start worrying.
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