Well, as an update on my digestive problems, I do believe the culprit is in fact gluten, and was spurred on to this by my doctor’s suspicions that it was. As a result, I’ve been doing a lot of googling on celiac disease, and there are a few things I wanted to mention here.

One, is the fact that I have just discovered that the blood tests and intestinal biopsy that most sites (and probably doctors) say are the ONLY tests for celiac, may in fact lead to ‘false positives’. ie the tests may come up negative for celiac or inconclusive, and there may not be damage to the small intestine that is visible under the microscope, even if you have all the symptoms of celiac. This information is from EnteroLab’s site. EnteroLab have their own patented test that tests for the celiac markers in the stool instead of the blood. They say that those markers only show up in the blood once things are quite severe. The good thing about their tests are that you can find out if gluten is a problem before you do too much damage to your intestines.

Now, I must confess as to not having picked up my test results yet, and am deducing a few things from what the receptionist didn’t say/do ie. they call you if there is a problem and ask you to come in. I rang, and nothing of the sort was said, she was all very casual and indicated they didn’t show anything up. Now, I would love if this were true, as I do like my fruit toast, but after being totally exasperated with feeling sick, and with no improvements after the giarda/parasite antibiotic, I decided to try a gluten free diet.

I also spoke to my mother, and she told me she has a definite reaction to gluten - abdominal cramps etc. And my 2 sisters do, one quite bad. None of them have been tested or been to the doctor about it though.

And lo and behold - once I started eliminating gluten, I did start to feel better, though things aren’t 100% yet. But the nausea did start to dissipate, to the point I rarely feel it now. And bowels are a bit better. But I also discovered along the way how prevalent gluten is - there are so many hidden sources in foods that it doesn’t seem possible for it to be in! This even extends to canned foods - something to do with the processing. So, it’s quite tough to try and eliminate all the sources of gluten!

But there are a few other interesting points:

• one celiac’s doctor believes that due to the damage to the intestinal wall, most people with celiac or gluten mediated damage, would have parasites. They may not even be detectable due to pockets in the intestines they could be hiding in (the pockets themselves due to damage)
• another guy wrote about bulimia and celiac - how, despite food diaries of 2 girls linking symptoms with gluten intake, symptoms which were highly uncomfortable, and led to them becoming bulimic, their docotors persuaded them the problem was psychological:

The food diaries show very clearly that the symptoms only occur after meals with gluten, and now while avoiding gluten the sense of swelling and heaviness has gone and she is finding that she doesn’t feel hungry all the time and has a lot more energy.

It disturbs me that these young girls were diagnosed as having psychological disorders even when classic coeliac symptoms were clearly present.

Bulimia is a well recognised symptom of the coeliac condition and the coeliac condition should be tested for by both blood tests, endoscopy and a trial gluten-free diet before a psychological cause is considered.

I could go on - it made me a bit angry as I could relate to the feeling of heaviness and dislike of food as a consequence of those feelings, and NOT because of self image. Funnily enough, anorexia in children is also a symptoms of celiac - hardly suprising really. I wonder how many supposed eating disorders are linked to this?