Does This Sound Like An Intolerance?

[c12]

For the past several months, I've noticed that whenever I eat grain products, I get really bloated, sometimes with an indigestion feeling. My digestion almost resembles the process of a snake...I get really bloated in my upper abdomen right after eating for like an hour or so, then the bloating moves down to my lower abdomen and stays for sometimes up to several days at a time. Additionally, I can't eat a normal sized meal without feeling horrible, so I've lost a lot of weight. I don't get diarrhea, but I do get bad constipation on and off. And I have horrible concentration lately, my skin is flaking and peeling, and I just generally don't feel well. In the past few days, I've also noticed a dull ache / tender feeling in the area around my belly button (which I believe is small intestine?).

So far I've gotten an acid reflux and IBS diagnosis, but the fact that grains in particular upset me so much makes me think that I MUST have some sort of intolerance. I had a blood test for celiac awhile back, but I didn't get a diagnosis, so I'm guessing the test was either negative or inconclusive. I had an ultrasound and CT done last week, and will be getting the results for those soon, then I have an endoscopy scheduled for later this month. So hopefully I'll know what the deal is soon.

I guess my question is this - even though I most likely tested negative for celiac, is it likely that I still have a grain intolerance? Do my symptoms sound familiar to anyone? Or does it sound more like something else?

Also, how much gluten would I need to eat prior to my endoscopy for the symptoms to show up? Would a couple pieces of bread the night before suffice, or would I need to be eating gluten continuously every day up until then for the damage to show up?

Thanks.

[psawyer]

It could well be an intolerance.

For the endoscopy to show damage, you have to be eating gluten on a regular basis for a while. The most common assertion seems to be at least the equivalent of two slices of bread daily for three months. It takes time to do enough damage for the biopsy to detect it. Even then, damage may be spotty and if only undamaged tissue is taken then you will have a false negative.

[elye]

The celiac blood panel can yield false negatives as well - - some sources estimate a third of the time.

Many people, myself included, believe that the only truly accurate diagnostic tool for gluten troubles is dietary response. The medical testing available today is just not reliable enough, often enough..... ...at least when we are talking about "negative" results.

[c12]

It could well be an intolerance.

For the endoscopy to show damage, you have to be eating gluten on a regular basis for a while. The most common assertion seems to be at least the equivalent of two slices of bread daily for three months. It takes time to do enough damage for the biopsy to detect it. Even then, damage may be spotty and if only undamaged tissue is taken then you will have a false negative.

I've been eating gluten all along (I never stopped), but it seems to be getting worse, so I was thinking of eliminating it now, even without a diagnosis. I guess the better question is: my endoscopy is in 10 days, so would cutting gluten out of my diet now allow the tissue to heal too much in that period of time? I'm starting to think it may be better to wait until after the test to eliminate, even if it means another week and a half of feeling awful.

[psawyer]

If I were you, I would soldier on for another few days and then cut out the gluten. You are so close.

In my own case, I suspected celiac, and had explicitly asked to be tested. The wait for the endoscopy was months, and I kept eating as I had been (and suffering).

Of course, I did not have the insight that I do now. But for a week and a half, I would keep eating gluten to avoid jeopardizing the test results.