A couple of weeks ago I got an email from Cindy, at RevolutionHealth.com, inviting me to take part in conference call interview with representatives of the National Foundation for Celiac Awareness. The most common response I got from friends here to this news was a somewhat confused "But, you don't have celiac disease." That is true. My thinking on the issue was that if one is going to eat gluten free, the distinction is going to become a little fuzzy sometimes. If you are a gluten-free blogger, there feels like a difference between not having celiac disease and being a non-celiac. It's more like not being Tiger Woods. I'm not Tiger, but I'm not Tiger in a different way than Not-Tiger, the one who won the U.S. open last week is not Tiger. I'm not sure if that makes any sense to anyone but me. Anyway, here was a chance to talk to a real, live Gastroenterologist, and a Spokesperson for the NFCA. Why not?
No reason other than the fact that I have felt terribly behind on writing my doctoral dissertation, that is. I have a mostly complete draft that people are editing for me, so I have some time now to actually write a post about this issue, finally. The audio of the call can be found here. I wish it could be downloaded, but I haven't been able to do more than stream it.
The Doctor was Dr. Jay DiMarino, Director of the Gastroenterology Training Program and Director of The Digestive Disease Institute at Thomas Jefferson University and University Hospital, Philadelphia, PA. Several other bloggers were invited to play too. Shauna James was there, as well as Rachel, Gina, Diane, Sloan, and Jackie Collins, who is RevolutionHealth's resident Gastrogirl.
I had three questions that I really wanted answers to. First was where we Non-Celiacs fit into the gluten free world. I'm a little sensitive to this recently, as some of my more recent posts show. If you ask google about gluten sensitivity or gluten intolerance, you get websites that will tell you that there are many people who are sensitive to gluten and may actually have celiac disease. It is like my gluten sensitivity is merely and undiagnosed or sub-clinical form of celiac disease. Is that all I am, then? This then relates to my second question, which was the rates of false negatives with the diagnostic tests, and the factors that influence the incidence of false negatives.
Sloan beat me to the question of sensitivity vs. celiac disease. To paraphrase a little bit, Dr. DiMarino said that essentially, celiac disease is an allergy. It is an immune response, like Hay Fever is an immune response. The difference being, of course, that Hay Fever makes your nose run and your eyes itch while celiac disease rips your intestines apart. Gluten sensitivity or intolerance is more similar to eating a not-ripe apple. There is nothing wrong with eating apples, but under-ripe ones just didn't agree with you.
I have to say that I didn't really like the analogy. I understand what he was trying to say, that eating gluten is leads to an unpleasant response but that there is no built-in immune response. Feeling sick after eating a green apple suggests that someone needs to man up a bit, or at least not eat green apples on an empty stomach. They are too acidic, and too crisp. I've eaten green apples, and never had the headaches and fogginess that gluten gives me. This is a little more fundamental than a little excess acid making my tummy hurt.
He did mention the issue of prolamines, and seemed to leave it to me to explain. So, I will. Proteins are chains of amino acids, of which there are 20 different kinds. These chains fold into balls, or twist into coils. Gluten proteins are abnormally high in proline, an amino acid that is different from the others in that the nitrogen in the amino part is part of a ring. Because of this, when you unwind the coil or untangle the ball of protein, the section with proline doesn't straighten out the same as all the rest. So you get amino acid chains like rope with an occasional kink in it. For some of us, Dr DiMarino seemed to suggest, the proline kinks interrupt the enzymes trying to digest the protein, and we end up with short sections of indigestible protein called prolamines floating around in the gut.
So what do these proline rich peptides do? Well, if they get into the blood stream and travel to the brain, they fit into opioid receptors. If you inject them into rats, you get rats that behave as if they are autistic. This connection is the basis for the GFCF diet many autistic kids are on. I'm neither a rat nor an autistic child, so what do they do to me? Well, they give me a headache, for one thing, and make my head a little foggy. They don't bother my tummy, though. Dr DiMarino is the first person I have heard call them prolamines. I have seen them some places referred to as exorphins, like the opposite of the endorphins (the pain killers the body produces when we get excited about something).