Could This Be Celiacs?

[Eriella]

Hi,

I was wondering if this sounds like Celiacs to you all: I have been having stomach problems for over a year and a half. Shortly before last Christmas I was rushed to the hospital with extreme pain on my right side that we thought was a gall bladder attack or possibly an appendix. Numerous cat scans, ultra-sounds, and blood/urine tests came up with no diagnosis except for finding an unrelated ovarian cyst. They told me that it was stress related and to try to relax more during my college finals. 5 months later (during finals again), the same thing happened. I was referred to a gastrointestinal specialist who said that I had severe constipation/partial bowel blockage. He said that it was stress induced and to try to reduce my stress level. He also put me on laxatives and told me to come back in 6 months. Because I couldn't take my medicine overseas where I was going to school (it was a large jar of white powder and security would have been a nightmare) , I stopped taking it and tried to control my bm naturally. I found that eating sandwiches, toast, and beer made me sick (cramping, constipation, bloated...), but I was fine as long as I avoided white carbs. When I returned to the states I immediately got sick again (we are guessing because I started to eat American food like bagels, pasta, pizza, cookies and rolls). After eating sugar cookies and pizza all day I was up the entire night with stomach pain and was constipated for the next week.

While I was overseas I lost 5 lbs (on my body that is a lot), but I immediately put it on and then some when I started eating gluten. Now that I have limited it, the weight is falling off again.

For the past 2 months I have been trying to figure out what is causing it, and I am finding that if I limit my gluten I feel better. Also, my grandmother happened to mention that her sister has celiacs, so I may have the genetic component. Does this sound like Celiacs to you? How do I convince my doctor to test me? I can't go to the doctors until May, but should I avoid gluten in the mean time or keep eating it to make sure that it won't skew the test.

Thanks in advance!

[celiacgirls]

It does sound like celiac disease or at least gluten intolerance to me.

If you want the gold standard dx, you will have to keep eating gluten in normal amounts until you are tested by the doctor.

If you are comfortable with self-diagnosing, you could just keep avoiding gluten since you feel better off from it. The risk there is that some day, you may doubt that gluten is a problem and go back to eating it when you may in fact have celiac disease and need to be extremely strict.

You could also do Enterolab testing which would still be accurate after several months (even up to a year) of gluten-free eating. This test is not widely accepted by doctors, though, and might still be viewed as self-diagnosing by many people and doctors.

If you decide to do the gold standard testing, you should probably go gluten-free after the testing, whatever the results are since you do feel better avoiding gluten.

I never had trouble convincing my daughter's doctors to test her when I told them we had a family history of celiac disease and she had GI symptoms. In her case, it was her great grandmother who had it, so it wasn't a close relative. My own doctor didn't want to test me because she "didn't want to look for trouble." At that time, I didn't push it because I didn't have any symptoms that I knew about and I didn't want to look for trouble either. My daughter's tests were always negative until we did the Enterolab testing.

[hathor]

It sounds like it could be celiac or non-celiac gluten sensitivity.

If you eliminate gluten and you feel better, why do you need a doctor's diagnosis? The diagnosis would just lead to the doctor telling you to eliminate gluten.

You can always arrange for Enterolab testing on your own if you want some confirmation. That will still be valid even if you go gluten-free.

I have the constipation thing myself. Enterolab is now looking at my, uh, intestinal output. But I've noticed an improvement in the month I've gone gluten-free. I also have some more allergy-type symptoms that immediately cleared up. So even if the Enterolab results are negative, I may continue the diet. It isn't wrong to avoid foods that you have problems dealing with, even if you don't have some doctor telling you to do it.