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Second-Class Celiac
As my readers know, I never had a biopsy to confirm celiac disease. Sometimes in celiac circles, or especially doctor’s offices, I am left feeling like I’m not a true bona-fide celiac. It doesn’t bother me enough to go and do the challenge, make myself sick, and get the biopsy (which may or may not be accurate) to find out… but it does bother me. Would I rather trust a lab than listen to my own body? Would I want to risk a false negative and continue poisoning myself? No and no. The damage, to whatever extent, had gone far enough. Gluten sensitivity, even if that's all I had, can have the same complications that bona-fide celiac disease has. I think a biopsy, if I had had one at the right time, would have shown damage, but regardless, whether I'm first-class or second-class, they are equally serious...
Quote from enterolab website:
"Do my positive results mean I have celiac sprue or that I need an intestinal biopsy?
The immune reaction to gluten is gluten sensitivity. Testing for the presence of an antibody produced against gluten is the diagnostic hallmark of gluten sensitivity (for years in the blood, and now more sensitively detected in stool with our testing). Although the immune reaction to gluten, i.e., gluten sensitivity, is the cause of the villous atrophy of celiac sprue, having these antibodies in stool, or even malabsorption, does not necessarily mean you will have detectable villous atrophy in an intestinal biopsy. But why does it matter, since it is known that a person can have every last complication from gluten sensitivity and never have villous atrophy? In other words, one can have gluten sensitivity damaging the intestine on a sub-microscopic level destroying function, or damaging other organs/tissues without having celiac sprue. Thus, there is no reason to expose yourself to the risks, invasive nature, and expense of an intestinal biopsy. This idea is not new. Some have said this for years with respect to positive antiendomysial antibodies. Now we extend this ideology to our stool testing; if you have the immune reaction, and especially if you have detectable malabsorption, symptoms, and/or immune disease, what is there to wait for to go gluten-free? And if you have none of these consequences, why wait for them to appear? Be thankful you do not, and go gluten-free."
I was doing a bit of research on gluten ataxia, as an article came out in Living Without about it. Since my brother’s amnesia, I have a deep interest in the topic. The man in the article also had memory loss, though only temporarily. So I did some searches online and was surprised to find that, once a neurologist has ruled out everything else, the diagnostic hallmark of gluten ataxia is the presence of antigliadin antibodies in the blood. That test, antigliadin IgG, is the same test that gastroenterologists say is meaningless in diagnosing celiac disease. Those with gluten ataxia will be sent in for a biopsy, but whether the biopsy shows damage to the villi or not, they are put on a gluten free diet, and if the antigliadin IgG goes down, their recovery is very likely.
Now, there are some things that can keep the antigliadin IgG from going down like it should, one of these things is cross-reacting. That is when the body confuses other proteins for gluten, usually casein (milk), but also possibly soy, and remotely possibly corn (as we learned from dogtorj in the link I posted last time. Enterolab provides tests for soy and casein sensitivity, as well as a few others. Unfortunately they don’t have one for corn. Another thing that can keep antigliadin IgG from going down is cross contamination.
Unfortunately I had a bad time from cross-contamination this week. I was using a sponge to scrub pans that had gluten cooked in them, for those in my house that can eat it, namely stuffed ravioli. After scrubbing it thoroughly, I put it in the dishwasher to complete the cleaning. Well, somebody else helped in the kitchen and used that same sponge to scrub my cast iron frying pan. Cast iron is porous enough that this was a problem, and it’s not something that can be cleaned in the dishwasher. Can you say bye bye sponges, and hello new pans for Christmas?
I've had 4 days now of feeling lousy, clumsy, weak, bathroom-dependent, and moody. Last night I started getting hypocalcemia symptoms again-numbness, so I took extra doses of calcium and a tad extra vitamin D, to make up for lost absorption. I took the good stuff too, phytocal. That seemed to help the symptoms within hours.