Winnie wrote me to ask "if you can give me an idea of what are the best places to talk to a lactose intolerant community online. In addition, what are the typical questions you get on lactose intolerant."
Here's what I wrote back to her.
LI is a strange problem. It's not medically serious so it doesn't attract communities in the way that life-threatening or -altering problems do. People have tried but they never grow or last. Probably the closest approximation today is Alisa Fleming's GoDairyFree.org. She's focused on sharing recipes and foods that don't contain milk rather than specifically lactose, although in many cases that's the same thing.
I gave the history of LI in my book Milk Is Not for Every Body. Nobody realized that such a condition existed until about the 1960s. That's when doctors and anthropologists went around the world testing native groups. They kept finding LI everywhere. But most of them didn't really notice because dairying was not part of their heritage so they didn't have large amounts of lactose in their cultures. Only northern Europeans and their descendants and colonies did.
There's a long history of not wanting to talk about intestinal problems in those societies. Since large amounts of lactose produce both diarrhea and particularly smelly flatulence, it was socially embarrassing to talk about. And doctors knew practically nothing about it, so all they did was recommend removing all milk from the diet. Full labeling regulations by the FDA were still in the future so it was often hard to tell whether a processed or baked food contained any milk in the first place. Lists of foods to avoid included such things as french fries and peas. (Presumably because sometime somewhere lactose was involved in the processing, though I've never tracked down exactly where.)
The food labeling requirements helped a lot. But the breakthrough was when a Dutch pharmaceutical company, Gist-Brocades, invented a method for producing commercial lactase, first a powder to add to liquid milk and remove the lactose and then a pill that could be taken with food. The American company Lactaid bought the rights to make it here. Their first pills were marketed in 1984. It was in the early 1990s, though, that they entered into a product war with a competitor, Dairy-Ease. Spending tens of millions on television commercials, they made the American public aware of LI. It became a regular joke for late-night comics and the regular ailment for the comic sidekick in movies and television. Making a joke of an ailment was oddly helpful. It's hard to be afraid of something that's a mere joke.
Since then all the attention has turned to food allergies (and celiac disease, which used to be called gluten intolerance). These are much more serious. Allergies primarily appear in babies unlike LI, which primarily appears in adults (except as a temporary condition after an intestinal ailment in babies), and is both much more difficult to deal with and, in a very few cases, life-threatening. There are hundreds of communities for these problems. The milk allergy community will provide some info about milk products that is useful for LI. But all the great majority of people with LI really need to know is to limit the quantity of lactose taken in at any one time and use lactase. Avoiding milk products really isn't necessary. There isn't much need for a community under these circumstances.
Many people still insist that isn't sufficient. It's difficult to know what to say to them. You can look at the results I posted in my blog about a year ago about the NIH State of the Science Conference on LI. Paper after paper was presented that said essentially that it was next to impossible to induce any symptoms at all in a laboratory setting, no matter how much lactose is given, making it impossible to study. If people insist than any trace of lactose triggers symptoms I'm sympathetic, but I have no medical information to present. Is it possible that much of the reaction for many people is psychological rather than physiological? Apparently. But LI is not life-threatening, so there is zero money for research. The medical studies are on tiny and often unrepresentative groups. We still don't know the answers to many basic questions.
If and when some of these answers emerge, you can be sure that I'll post them here.
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