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jo50mom

Testing For Celiac's

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I am very new to this forum, but am appreciative of any input I can receive. I was first diagnosed with Severe Rheumatoid Arthritis in 2008, along with fibromyalgia and systemic lupus. All of these things were discovered after having a surgery, I never seemed to get well. I had a tumor that had begun to strangulate my intestines. Long story short, after the surgery I never could get to the point I was before, and my bowels did not work on their own for almost a year and a half. I took massive doses of laxatives, and other over the counter medications. I endured about every test the doc's could give me with no answer on why I was this way. As time progressed, as well as my R.A. I began to have problems in the opposite direction. I have excruciating bouts of diarrhea after eating breads, and other foods that contain gluten. I again was sent to a G.I. doctor who is now testing for Celiac's. I have received some test results which show the antiglubins test to be on the high side, but two other tests were found to be in the normal to high range. The doctor says he would like to take biopsies to confirm or refute the diagnosis. I know how this is going to sound, but after having biopsies a year ago, and with all the other illnesses and mounting medical costs I already have: I am skeptical about possibly spending the money un-necessarily. I am wondering if anyone here can give any advice that may assist me in making this decision. I live in Louisiana, and would be quite interested in any support groups that may be in the Lafayette area. Thanks for the time.

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It is up to you whether you want to have the biopsy done or not. If you would have trouble sticking with the diet without it then go ahead and have it done but be aware that there are false negatives on both blood and biopsy.

With a postive blood test chances are very good you are one of us. When you are done with testing do give the diet a good strict try no matter what the results are. Sometimes our bodies tell us what the testing cannot.

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I am very new to this forum, but am appreciative of any input I can receive. I was first diagnosed with Severe Rheumatoid Arthritis in 2008, along with fibromyalgia and systemic lupus. All of these things were discovered after having a surgery, I never seemed to get well. I had a tumor that had begun to strangulate my intestines. Long story short, after the surgery I never could get to the point I was before, and my bowels did not work on their own for almost a year and a half. I took massive doses of laxatives, and other over the counter medications. I endured about every test the doc's could give me with no answer on why I was this way. As time progressed, as well as my R.A. I began to have problems in the opposite direction. I have excruciating bouts of diarrhea after eating breads, and other foods that contain gluten. I again was sent to a G.I. doctor who is now testing for Celiac's. I have received some test results which show the antiglubins test to be on the high side, but two other tests were found to be in the normal to high range. The doctor says he would like to take biopsies to confirm or refute the diagnosis. I know how this is going to sound, but after having biopsies a year ago, and with all the other illnesses and mounting medical costs I already have: I am skeptical about possibly spending the money un-necessarily. I am wondering if anyone here can give any advice that may assist me in making this decision. I live in Louisiana, and would be quite interested in any support groups that may be in the Lafayette area. Thanks for the time.

As you no doubt know, to get the official diagnosis you have to keep eating gluten until the biopsy. However, there's nothing to stop you from just declaring yourself diagnosed and quitting gluten right away. I never even got to the blood test stage, so I'm either the best or the worst person to talk to depending on your point of view. You should probably talk to the doctor first, though. S/he might be willing to diagnose you based on blood tests, family history and reaction to the gluten-free diet.

Celiac Sprue Association has no affiliate in Lafayette http://www.csaceliacs.org/chapters2.php?stateid=19 There is a Support Groups board on this website as well as a Meeting Room. Both are places where you can post seeking other celiacs in your area, but both unfortunately are very slow. You might want to ask at your G.I. doctor's office if they know of any celiac support groups in Lafayette, or if they're treating any other celiacs. I had the devil's own time finding the support group in Columbia, a similar sized city to Lafayette, but tracked them down eventually. You can also ask at local health food stores and/or check their notice boards and calendars.

Good luck, and welcome to the board.

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As you no doubt know, to get the official diagnosis you have to keep eating gluten until the biopsy. However, there's nothing to stop you from just declaring yourself diagnosed and quitting gluten right away. I never even got to the blood test stage, so I'm either the best or the worst person to talk to depending on your point of view. You should probably talk to the doctor first, though. S/he might be willing to diagnose you based on blood tests, family history and reaction to the gluten-free diet.

Celiac Sprue Association has no affiliate in Lafayette http://www.csaceliacs.org/chapters2.php?stateid=19 There is a Support Groups board on this website as well as a Meeting Room. Both are places where you can post seeking other celiacs in your area, but both unfortunately are very slow. You might want to ask at your G.I. doctor's office if they know of any celiac support groups in Lafayette, or if they're treating any other celiacs. I had the devil's own time finding the support group in Columbia, a similar sized city to Lafayette, but tracked them down eventually. You can also ask at local health food stores and/or check their notice boards and calendars.

Good luck, and welcome to the board.

Thanks for the advice, this has been quite stressful, as I am sure you know but I was able to locate a store in my area that provides gluten free foods. I am looking forward to the hope this may stop a lot of my problems. I think one of the hardest things is trying to explain to someone what's going on with you when just a short time ago I was well.

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Thanks for the advice, this has been quite stressful, as I am sure you know but I was able to locate a store in my area that provides gluten free foods. I am looking forward to the hope this may stop a lot of my problems. I think one of the hardest things is trying to explain to someone what's going on with you when just a short time ago I was well.

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