wendibird22
04-19-2012, 04:15 PM
Many of you probably recall a long list of my posts about trying to figure out the cause of a whole host of symptoms (nausea, headaches, canker sores, dizzy/buzzed, bloating and distention w/ epigastric pain, crushing fatigue, heartburn (but not reflux), cystic acne, tingling in fingers on rt hand) since Nov 2010. I started pursuing causes in June 2011. I've had many many blood tests, exams, and diagnostics (CT scans and barium swallows, xrays, ultrasounds of my pelvic region). All my blood tests (including those for celiac) and other diagnostics have been completely normal. After several trial elimination diets I went gluten-free for a prolonged period in Nov 2011. I did a 5 day gluten challenge in Feb and a 7 day challenge just a few weeks ago. Though my symptoms didn't go away completely during the 4 mos prior to the challenge they did see some improvement and clear regression with the gluten challenge. I'm fairly certain gluten is the cause of my issues and happy to remain gluten-free.
That brings me to my question. I have a follow up with my primary care physician tomorrow. In the almost 1 year of guessing my issue I've done just about everything but be referred to a GI.
Given my symptoms, response to a gluten free diet, and neg celiac test should I:
1. ask for a GI referral and likely go back on gluten for an endoscopy (since there's a 20-30% false negative rate on the blood tests)? This would really confirm or eliminate celiac. I could still be non-celiac gluten intolerant.
2. ask for genetic testing? I have 2 daughters, both very tiny, both with sometimes bloated bellies, one with chronic constipation and canker sores (though not frequently). Gene testing could be a piece of the puzzle for me and for them. I did ask her about this previously but she dismissed it since my other blood work was negative. While having or not having the common celiac genes doesn't indicate you have or haven't the disorder, finding out I have them, along with my symptoms and improvement on diet would likely indicate celiac and the possibility of my kids having it/developing it to. Conversely, not having the genes helps to rule it out (paired with neg blood test) and lessens the likelihood that my daughters have an issue with gluten.
or
3. thank my pcp for her work (or lack there of), call myself non-celiac gluten intolerant, and go about my merry way?
I honestly can't decide what my next best course of action is. I'm leaning towards #2 since it doesn't require my ingestion of gluten for 3 long months and could help give some possible answers for my daughters w/out having to subject a 2yo and 4yo to unnecessary blood tests if I don't carry known common genes. But given that I already asked my pcp about it and she wrote me off, I'm not sure that I'd get anywhere with a 2nd request (short of lying and saying that the pediatrician asked me to have it done, and even then she could still say no).
I've asked this same question over on the celiac boards but I can already anticipate they will all say #3 because many of them think the medical system is inept at diagnosing celiac and that if you feel better w/out gluten then your answer is simply to avoid it...no diagnosis needed. But I'm curious what all the wise moms on the BBB think.
That brings me to my question. I have a follow up with my primary care physician tomorrow. In the almost 1 year of guessing my issue I've done just about everything but be referred to a GI.
Given my symptoms, response to a gluten free diet, and neg celiac test should I:
1. ask for a GI referral and likely go back on gluten for an endoscopy (since there's a 20-30% false negative rate on the blood tests)? This would really confirm or eliminate celiac. I could still be non-celiac gluten intolerant.
2. ask for genetic testing? I have 2 daughters, both very tiny, both with sometimes bloated bellies, one with chronic constipation and canker sores (though not frequently). Gene testing could be a piece of the puzzle for me and for them. I did ask her about this previously but she dismissed it since my other blood work was negative. While having or not having the common celiac genes doesn't indicate you have or haven't the disorder, finding out I have them, along with my symptoms and improvement on diet would likely indicate celiac and the possibility of my kids having it/developing it to. Conversely, not having the genes helps to rule it out (paired with neg blood test) and lessens the likelihood that my daughters have an issue with gluten.
or
3. thank my pcp for her work (or lack there of), call myself non-celiac gluten intolerant, and go about my merry way?
I honestly can't decide what my next best course of action is. I'm leaning towards #2 since it doesn't require my ingestion of gluten for 3 long months and could help give some possible answers for my daughters w/out having to subject a 2yo and 4yo to unnecessary blood tests if I don't carry known common genes. But given that I already asked my pcp about it and she wrote me off, I'm not sure that I'd get anywhere with a 2nd request (short of lying and saying that the pediatrician asked me to have it done, and even then she could still say no).
I've asked this same question over on the celiac boards but I can already anticipate they will all say #3 because many of them think the medical system is inept at diagnosing celiac and that if you feel better w/out gluten then your answer is simply to avoid it...no diagnosis needed. But I'm curious what all the wise moms on the BBB think.