Never tested, but gluten-free made symptoms disappear

[b0k0n0n]

Hi, all!

I am posting this in the Pre-Diagnosis section simply because I was never tested (b/c my doc didn't see the need). I apologize in advance for the length of this post but I want to be as thorough as possible in order to best describe what I went through and get the thoughts of both confirmed celiacs and others, as well as potentially come across someone who had a similar experience.

About 10 years ago every once in awhile I would be awakened by excruciating pain running across my torso near my belly button. All I could do was wait it out when it happened (in the fetal position, which was the only tolerable position). This did not happen often. Perhaps once or twice per year.

About the third or fourth time it happened I finally went to my doctor, who had me undergo every test imaginable (including peeing in a bottle every time I had to pee for 24 hours and taking that to a lab to be tested). Every test, that is except for an allergy test. My doctor's thoughts were that the test would indicate I was allergic to something (in his opinion the allergy test always comes back with at least one positive) so there was no reason to do it. In his defense, at the time I was in my mid/late 30s, and either gluten intolerance or celiac was the furthest thing from my mind as I had always eaten bread and things with gluten.

All the tests came back negative and I was referred to a GI doctor. This doctor wanted me to stop eating raw vegetables for six weeks and see if that helped. It didn't. Eventually I had a colonoscopy (I was close to 40 at this point), which came back clear. The GI doctor was then done with me and sent me back to my primary-care doctor.

At this point my doctor thought I was suffering from anxiety and wanted me to take amitriptyline. I was not too keen on this, so I finally listened to the advice of a friend of mine who had been on me throughout this entire process to just try a gluten-free diet.

I did, and within one week I felt fine.

It has been about two years now and my symptoms have disappeared. The reason I am curious as to what I have is that my symptoms, at least from what I have read, do not fit typical celiac symptoms. Here are what I experienced the most:

- The pains I mentioned above: linear across my belly button. A little above, a little below. Felt like severe cramping and pins/needles. Not static pain, although it was always there. But it cycled, got severe, then a little better, then surged again. This usually lasted for about one day after it started.

- Bloating on my right side. I felt a lot of pressure near my right oblique. Like a lot  of pressure. As in I thought if I could somehow open up my right side I would be okay.

- When the up-at-night cramps hit I would have no energy at all until they went away.

I never had diarrhea or abnormal bowel movements, skin rashes/dry skin/itching, or drastic weight changes.

One more thing: one doctor immediately went to gall bladder and wanted me to have it removed. However I chose not to (and am glad I made this choice).

Another thing: the only other food that made me have this reaction on a day I ate no gluten was sweet potato (just cooked in a microwave, but this happened twice). No joke. I'm throwing that out there in the hope that someone just said, "Holy crap! Me, too!"

I am used to being gluten free now but at first it was a real pain in the butt. I went almost four decades on a diet that was anything but gluten free (for example, I used to make bread at a bakery!!!).

I don't understand why at least the GI doctor never tested me for an allergy. I know that I will not be tested now b/c, from what I have read, I would have to be eating gluten again for quite some time in order to get an accurate test.

So I am curious if anyone has had anything like this and it turned out to be something else. Or if this sounds like celiac or gluten intolerance. Any thoughts will be greatly appreciated. Any further info needed, I will be happy to provide it.

Thanks in advance, and I look forward to what everyone has to say!

[cyclinglady]

The only way to find out if you have celiac disease is to get tested.  Unfortunately, you would have to go back to consuming gluten daily for 8 to 12 weeks.  There are over 300 symptoms attributed to celiac disease.  So, it impossible to guess if you have celiac disease or a gluten intolerance.   Check out the University of Chicago's celiac website for more information.  Good luck!