Endoscopy Only - Result Negative

[Lucy Lastic]

Hi everyone. I have been reading these forums and you all seem very friendly and helpful.

I am a 42 year old woman and I have had IBS since my early 20s. I would get diarrhea and some cramping frequently but it used to be mostly brought on by stress or lactose intolerance.

Over the last year I have had it much more frequently, several times a week, and it is accompanied by severe cramping, fatigue and the general feeling like I have eaten shards of glass for several days after. I get very worn out and even lightheaded and confused but I attribute that to not eating much for several days when I feel bad. I have also lost about 30 lbs in the last year.

I told my Doctor this and she sent me to a gastroenterologist. That doc ordered a colonoscopy and endoscopy with a biopsy to check for Celiac last January. All the tests came back fine and she said the biopsy was negative and that my problem was IBS. She didn't even change my meds or anything (family doc put me on Hyoscyamine). I had blood tests as well from my family doc but I don't think those were for celiac.

Anyway, a couple of months before the tests I tried a gluten free diet on the advice of a friend. I felt better but still had some problems. I started eating gluten again for about a month before the biopsy when the doc told me I needed to for it to show up on the test results. So I guess my question is, could 2 months on and then one month off of the gluten free diet cause the biopsy results to be wrong? I felt better for a month or two after the biopsy but then started having the symptoms often again.

I am gluten free now since about a month or two ago and feel a bit better again but I still have flare ups. I don't know if that is hidden gluten I am eating, since I am new to this, or if it really just is IBS. Are there other tests I should have done? My health insurance sucks and I am still paying off the $3000.00 procedure so I can't really afford to do that again. I am just confused, frustrated and very tired of being sick and in pain all the time.

[MitziG]

Yes, after being gluten-free for 2 mos, you may have needed to eat gluten for 3-4 mos to show villi damage again- if you had it before.

Non-celiac gluten intolerance may also be your issue however, and there is no way to test for it. If you feel better off gluten, that is your answer.

[beachbirdie]

I second the yes vote.

You do not say how much gluten you were eating. It needs to be a lot, I've heard around the equivalent of 4 slices of bread a day.

If I may suggest, why not contact your doctor's office and get copies of the reports for the endoscopy (you may need to get some of it separately from pathologist) and your bloodwork. If you post them here, some of the really educated people can maybe see what's going on. Sometimes a 'scope will be interpreted as negative when in reality it shows inflammation and low-grade damage. Since you were off gluten, your result might not reflect what you would have seen while eating gluten.

Find out how many samples they took. If they only took one or two, they did not do enough. Damage can be patchy and is often missed.

[Lucy Lastic]

Oh, thank you.

I will call and see if I can get copies of my test results. I don't remember how much gluten I ate before the biopsy but it probably wasn't equal to 4 slices of bread a day. I just ate what I normally would eat in a day.