Non-Celiac Gluten Sensitivity Needs Better Diagnosis Standards - Sfgate

[Scott Adams]

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[NatureChick]

This article bothers me quite a bit. It is basically advocating for creating guidelines to define a "syndrome", which just means that the medical community doesn't know what is going on but would like an official bucket into which to throw these patients so that they can move on.

How about, instead of creating some guidelines, the medical community does some more research. People are having symptoms that are as bad as if they had celiac disease, but test negative for celiac, and yet they have the same positive results from going gluten-free. So lets figure out what their reactions are and how those reactions can show up in a blood tests. Lets figure out more rather than dump what is probably several different problems into a common bucket and think that we've accomplished something.

[spirit22]

Hi ~ I am new here and am one of those who underwent the celiac panel (tested 8 points high on the tTG IGA but negative on the rest of the panel), underwent endoscopic biopies (several of them, each one cut into smaller pieces by the pathologist) and received a negative diagnosis of celiac. I asked to re-take the celiac panel a week after my endoscopy. Since I had been gluten-free that week, my higher IGA reading had reduced down within the 2/3 normal range.

 

My frustration lies with my gastro doing the procedure and then "letting me go out into the world on my own", with no definitive diagnosis, not even "You MAY have a gluten-sensitivity"! Nor was I instructed to find myself a dietician if I planned to go gluten-free. Has anyone else experienced such indifference?

 

I am seeing my primary doc on June 17th and plan to ask if she will (kindly) order a celiac genetic marker test to see if I might have markers for it. I am hoping I do not have markers but I'd still like to know for sure. Since the endocscopy procedure, my stomach problems have quieted down to almost nil but now I'm having problems in my lower abdomen. To put it mildly, I am struggling here and feel I have no physician input.

 

I have IBS that I am already dealing with and have found that in going off gluten, my IBS-constipation has returned like a demon. I've been reading everything I can get my hands on to find out which gluten-free foods have the most fiber and trying to stay away from the ones who have zilch to little (like white rice). Is anyone else dealing with IBS-C plus gluten-sensitivity? If so, what are you eating and how are you staying out of the constipated zone?

 

Any help is much appreciated!

[NatureChick]

IBS is another one of those diagnoses that doesn't actually tell you what the problem is. Either Irritable Bowel Syndrome or Inflammatory Bowel Disease, neither tells you a cause or a solid treatment plan. They aren't actually diagnoses!!!

My "diagnosis" of IBS was actually a B12 deficiency (from malabsorption) that was bad enough to cause abdominal pain. Don't ever be satisfied with an IBS diagnosis. Keep looking for answers. 

[spirit22]

IBS is another one of those diagnoses that doesn't actually tell you what the problem is. Either Irritable Bowel Syndrome or Inflammatory Bowel Disease, neither tells you a cause or a solid treatment plan. They aren't actually diagnoses!!!

My "diagnosis" of IBS was actually a B12 deficiency (from malabsorption) that was bad enough to cause abdominal pain. Don't ever be satisfied with an IBS diagnosis. Keep looking for answers. 

Hi Naturechick ~

 

Thanks for the suggestion about checking my vitamin B-12. I have an upcoming appointment with my primary doc & will inquire about being tested.

[NatureChick]

spirit,

I have no idea what might be causing your problems. But at some point, you'll have to stop hoping for other people to solve it for you. All any of us can do is offer ideas to research further, but I wasn't offering ideas above, just ranting against the medical establishment.

[spirit22]

Naturechick ~

 

Thanks for your advice. I really appreciate you taking the time to post.