Warning: Some of the following material contains graphic terms and descriptions which may make some people uncomfortable. It also contains a lot of personal information some folks may misconstrue as whining. However, to present this disease in an accurate and human light, I have to describe unpleasant conditions and grouse a bit. I do it all in the name of education.
Both my son, Ted, and I have a "rare" disorder known by any of the names in the title up top. I say we are celiacs.
It's not surprising that we both have this disease, since it's genetic. It rides on the same gene as diabetes, and like diabetes you can carry the gene and not have the disease; some sort of triggering mechanism is necessary to "trip" the gene and give the carrier an active case.
What is surprising is that I had an active case of celiac disease for a couple of years before I discovered it. Heck, I'd never even heard of it; most people haven't. (Well, it's rare, isn't it? Well maybe not. But more on that later.)
The first clue to sprue in the family came right after Ted's first birthday. We put him on whole milk and solid foods, and he reacted by having diarrhea for day after day after day. My first thought was the milk -- so we removed that from his diet, but it didn't help. My next thought was: "What else does he eat every day?" since he was suffering every day. The only food common to every day was wheat. We removed wheat from his diet, and he improved.
It was a long way from that experiment (with many bumps in the road) to an understanding that the problem was not just wheat, and that wheat itself was not a simple ingredient. It hid under many other names. Plus there were other offenders: barley (commonly found in malt), and rye, and possibly oats.
Since Ted was so young, and we live a fairly chaotic lifestyle, we decided it would be best to have the whole house go "gluten-free" (it's actually not gluten but probably gliadin that causes the problem for celiacs, but never mind; "gluten-free" is the popular term for a celiac-safe diet). We did not want him to get sick by picking up a cookie or cracker left lying around, and the complications of contamination from crumbs in the butter and on the toaster... well, we decided it would be simpler (if more expensive) to just eliminate all the offending foods from the household until he was older.
At the same time, I was not feeling exactly well. I went for a physical but the only thing my family doctor could find was a serious case of post nasal drip (!) and otherwise I left with a clean bill of health. I still felt awful, though, with intermittent mild nausea, headaches, and I was tired all the time.
Three months into Ted's new diet, I discovered that when I ate out -- say, pasta for lunch at Portofino, or some of that great whole wheat bread from Lite Bites -- I'd feel really bogged down and nauseous afterward. So okay, I had to be hit in the head with the likes of a 2x4 before I put two and two together: Ted has a genetic disorder; where did he get it from? and I am not feeling well. Hmm. But I did eventually figure it out. I quit having those wheat-laden meals out, and I began to feel better.
The diet is a serious challenge at first. I'd never have learned to cope with it, to find all the foods in which grains toxic to Ted and me hide in, without help from the Internet. Some kind people on GEnie did a search and found the Listserv at St. John's that had just been started for celiacs and others who need to avoid wheat. The sense of community there and the solid information and the recipes, too, helped tremendously. With these pages I hope to give something back to them, and to all the other celiacs known and unknown out there.
Celiac sprue is an autoimmune disorder in which a series of peptides in offending grains (wheat, rye, barley and possibly oats) are mistaken for an invader. In an overenthusiastic attempt to defeat the invader, the small intestine is damaged, resulting in destruction of the villi. In the short run this can lead to problems like lactose intolerance and malnutrition through the inability to thoroughly break down and digest food; in the long run it can lead to cancer.
The most common symptom of celiac disease is chronic diarrhea and/or steatorrhea (fatty stools -- they float). Other symptoms include constipation, nausea and vomitting; bloated belly, feeling of fullness, gas. However, some people have no symptoms or such slight symptoms (like I did, though I imagine mine would have gotten worse over time), that it's impossible to tell they are celiacs. The range of symptoms is so great -- from serious illness to no symptoms at all, and every combination in between -- that this disease has been called "The Great Mimic." Many of the clues to one's having an active case of celiac disease are symptoms of side effects of damage to the small intestine: osteoporosis, tooth decay and bone pain (inability to absorb calcium); being easily bruised; tired all the time; weight loss or even weight gain; canker sores; moodiness; a feeling of being increasingly dull-witted.
Still considered a rare disease by many American doctors, this disease has a diagnosis rate estimated between 1:1000 and 1:250 in some European countries. Because it is considered rare, and physicians often look for only "classic" symptoms, it is definitely underdiagnosed here. A recent study pulled 2000 random samples of blood from the Red Cross, which were then tested with a panel of blood tests currently in use to screen for celiac disease. The study found 8 samples with results indicating the donors very likely had celiac disease. This gives a 1:250 rate even in the United States.
Please don't make the same mistake I did, and try a wheat-free diet before you really understand its implications. Please visit my Self-Diagnosis page for some thoughts on why you should get an official diagnosis, and information on how to go about obtaining one.
What a wonderful world it would be if we could shop as easily as some people do for Kosher foods; just look for a symbol on the label. How about going into McDonald's and being able to order a gluten-free bun on your burger? Pie in the Sky, you say? Maybe not. If it were widely known that celiac disease is not rare; if those currently suffering from the disease were diagnosed, and our numbers -- somewhere between 500,000 and one million in the U.S. alone, by expert estimates -- were well known, manufacturers could be inspired to be clearer about their ingredients; the FDA might be induced to change labeling laws in our favor. You can help make this happen. Well-respected scientists are currently building funding for a definitive study that would prove what the incidence of celiac disease in the U.S. is; visit this page to get the details. In some countries in Europe, you can get that gluten-free bun at McDonald's, and the difference was made by having accurate numbers. I'm going to pledge funds; how about you?
The mailing list for celiacs that I mentioned above is excellent. If you have celiac disease or suspect that you do, you could not go wrong in simply subscribing to the list. To subscribe, send email to LISTSERV@MAELSTROM.STJOHNS.EDU and in the body of the email type:
SUBSCRIBE CELIAC your name
where "your name" is your actual name. Shortly after you send the above message you'll receive an email message with further instructions you'll need to follow to complete your subscription.
The celiac list now has its own homepage, with more information on the wonderful ways you can access the wealth of information it provides: Celiac/Coeliac, Dermatitis Herpetiformis (DH), Wheat/Gluten-Free List Home Page.
Or, as a starting point, you can go to the FAQ page and grab a copy of the Listserv's FAQ.