How Do I Know?

[jen-dakotaj]

I have had issues with horrible belly pain since March when I couldn't get out of bed because I was so sick. I was tested for Mono and several other things and everything came back negative. I thought it might be related to the fact that I had been constipated consistently for about a year and was referred over to a GI specialist in town. The symptoms kept getting worse as time went on. I was scheduled for an upper and lower GI series at the beginning of May. This was the first time I had a lower GI (at age 32) but I had numerous upper GI's becuase I had gallbladder disease at 20 and reflux surgery at 24. The results showed lots of irritation on the upper GI and I was put on Protonix. The lower GI could not be completed becuase in the middle of the procedure I woke up in pain and he terminated the procedure after he could not adequately sedate me to get rid of the pain. The symptoms worsened over the summer. They did not take any biopsies of the lower GI but did some blood work for Celiac. The blood work came back negative. During the summer I had a really bad attack and wanted my doctor to physically see what happened to me during these attacks so he got me in a couple of hours later. When I got to his office I felt like I was going to pass out and the pain was horrible. My stomach had swollen up like I was 9 months pregnant again and my blood pressure was out of the roof along with my heart rate. When they checked my heart rate it was 125. At this point my doctor decided that something was definitely convinced that something was wrong and wanted to send me to a specialist at a bigger research hospital since we did not have all the equipment they would have. I saw the doctor in St.Louis at Barnes Jewish and he reviewed my chart and thought that it was maybe a systemic reaction to wheat since I had an allergy test several years ago that was positive for wheat allergies. He scheduled another upper GI and lower GI a couple of days later and we waited for the results once again. Once again everything came back negative and the biopsies showed no celiac either. He changed my medications around and tried to fix it that way. I have tried a gluteen free diet a couple of times and like many others have said they still had problems. I feel like sometimes that this diet helps but when the problem happens again I always question whether it is helping me or not or if I really do have Celiac despite what the tests show. During this process I lost 22 pounds and I did not really have the weight to loose. Someone please tell me if my thinking is right or if it might possibly be something else?

[mftnchn]

Sorry for all you are going through. There are a good number of folk on this forum with negative tests but positive dietary response.

Can you say more about your gluten free diet trials? How long? How strict? Did you consider cross contamination issues and eliminate those as well?

It is possible that you will need to be gluten free plus something else to be rid of the symptoms more consistently. Gluten free plus milk free should be tried, and then also perhaps soy free. From there, it is an elimination diet and more unique for people. In addition, the recovery process can be slow with ups and downs a natural part of the transition. You may have to wait months for consistency. In my case, damage to the villi caused lack of carbohydrate digesting enzymes and I have had to eliminate most carbs as well, at least for awhile.

Damage can be patchy and thus missed in a biopsy. Have you had genetic tests to see what your celiac risk might be? You could also consider doing Enterolab which is done on stool and might be a bit more sensitive to gluten issues.

Also, check out the lyme disease thread on this forum just to see. Some lyme patients have had profound GI symptoms.