Wrong Since 1998: It Was Lactose Intolerance, Not Gluten

Note: This is a personal blog entry that is off topic for the blog, but I'm posting it here so it's public and searchable by others who might have had similar issues.

I've had a sensitive digestive system my whole life, and back in 1998 it got so bad that I went to my doctor about it. He gave me a sort of prescription strength Immodium, and not happy with treating the symptom and not the problem, I went to a different doctor, went through a bunch of blood tests and an elimination diet, and ended up cutting out gluten (long before doing so was trendy). I definitely had less issues and lost some weight, but things were still never quite right, and I would occasionally have serious problems (although less frequently than before). In recent years, cutting out gluten has gotten trendy, and a lot more quality gluten free options have become available, and I started availing myself of them--and had even more problems. I would occasionally binge on excellent gluten-free chocolate chip cookies, or local gluten-free cup cakes, or fresh cooked gluten-free pizza, and in each case I would have terrible digestive problems the next day. So late last year, I decided to followup with a gastroenterologist. He did more tests, didn't find anything physical and suggested that I take a probiotic and keep a food diary. Things got a little better, and I actually started eating gluten again, but I still got occasional problems which seemed pretty mysterious.

After a month of eating gluten again, things seemed better but still not 100%. So I went back through the food diary, and found that the day before any problem day, I had eaten food with lactose (not all of which was immediately obvious, see below). I had long suspected that lactose intolerance might have been my real problem, but in most of my online research I always turned up things that  said, "symptoms usually begin 30 minutes to 2 hours", where my problems almost always are the day after I eat a problem food--typically 12-24 hours later.  

In addition to digestive problems, I had long had what I thought was an allergic reaction to some (typically greasy) foods--I'd get post nasal drip, and would have to clear my throat for half an hour or so after eating. So with all this information I went to see an allergist who specialized in food issues. It turned out that he himself is lactose intolerant and also had the long reaction time, and he suspected that lactose was my issue too.  But being a good diagnostician, he gave me some more info and suggested that I continue my detailed food diary with this in mind and come back in a few weeks. He also did a bank of food allergy skin tests, and I came up completely clear, and that the throat clearing/post nasal drip was actually "silent reflux".

After being wrong for so many years I was a bit hesitant about jumping on the lactose intolerance bandwagon, but carefully avoiding lactose, further food diary recording and a followup visit with the allergist had me pretty convinced that it was lactose all along, and a few things recently have supported the lactose intolerance hypothesis pretty strongly. First, it turns out that some breads are made with butter and some are not.  So by cutting out bread all those years I cut out a source of lactose. In addition, by cutting out things like bagels (which are generally not made with dairy products) I was really cutting out the problematic cream cheese; by cutting out the pizza I was really cutting out the mysterious pizza cheese blend. I love cheese and this was another source of confusion--lactose is the sugar in milk and while some cheeses have a lot of it, aged cheeses (like cheddar, parmesan and swiss--not likely coincidentally my favorites) and processed cheeses have very small amounts of lactose and I seem to be OK with them.

So for the last couple months I've been judiciously reading food labels and cutting out as much lactose as possible.  But that's not easy to do on the road. So on my recent storm chasing trip (writeup here), I was careful about what I would eat--or at least I thought I was. I was doing fine, and one frantic day (storm chasing can mean eating a lot of crappy foods) I ate a couple candy bars (my only dinner while on a storm) that I thought didn't have dairy, and I ended up with horrible problems.  I went back and more carefully read the label, and sure enough it had a milk ingredient in it--I had just missed it.  As an experiment, the next day I tried the same candy bar but took some Lactaid, a digestive enzyme that you take with the first bite of food.  And the next day I had no problems. So for the rest of the trip, with every meal that I didn't cook (which was all of them) I took Lactaid and had no problems.  And when I got home I tried one last experiment--I ordered a regular, gluten-containing pizza, and took Lactaid as I started eating and when I finished, and had no problems the next day.  Last night I was at a party and ate some likely butter-containing bread, but forgot to bring the lactaid, and sure enough, had problems today.  It seems pretty likely to me that the lactose intolerance hypothesis is correct.

So after these experiments and continuing to study food labels, I'm avoiding lactose whenever possible, but it's great, after so many years, to have a better handle on the situation, and with the Lactaid I have a solution for travel, which I love to do and has long been problematic. I'm going to focus the food diary now onto figuring out the foods that cause the silent reflux.  

And why the picture of Double Stuf Oreos?  Oreos, it turns out, don't contain milk and therefore also don't contain lactose (just don't eat them with milk).  My biggest problem after avoiding these kind of foods for 17 years or so is now to restrain myself from making up for lost time and overdosing on Oreos.