We've decided to continue gluten-free for a while. J. says until the end of July, I'm plugging for the rest of the summer, we'll see what I can convince him of. Because rheumatoid arthritis is such a slippery thing to get a hold on, we feel like we need more information - is this just a summer slowdown regardless, or might he have had a bad episode were we still eating wheat? As always with RA, it's just hard to say. Still keeping the pain/energy diary, and bloodwork is next week.
Our original goal was just until his birthday, a couple weeks ago. That gave us five weeks. The older thinking with an elimination/challenge was, eliminate the offending food for 2 weeks, add it back in slowly. The newer thinking is, eliminate it for longer, have a "glutton day" of the food, and if you have a strong reaction to it, eliminate it again for one day, then start adding it slowly back in over time until you reach a point at which you notice you are once again having the reaction.
There are problems with this approach. For one thing, no matter how long you say you are going to stay off the target food, some asshole naturopath will tell you it's not long enough. (And by "some asshole naturopath," I specifically mean the one I can't stand who hurt my ears when I consulted her, and the one who is married to my husband's acupuncturist, who is not actually an asshole at all but just gives the impression of buying into every ND fad going around right now, particularly "we're all allergic to wheat" and "oh god don't eat soy.") So we have people telling us we have to stay off for three weeks longer than whatever random length of time we tell them we're going for. Which is really really irritating.
But worse than that, is the fact that really nobody knows what the hell they're talking about when it comes to rheumatoid arthritis. And I include J's kind, patient, well-educated rheumatologist, who sees J. several times a year, in that number. Now I don't mean to run these people down. They are trying their damndest. When I hear Sean talk about the accidental discovery of the effect of Tumor Necrosis Factor, or listen to his explanations of growing biologic modifiers on hamster ovary tissue, I have no doubt that there is a crack team of people trying to figure out what the flock to do about this disease. When I can look at a sort of time-lapse video of synovial fluid in the metacarpal-phalangeal joints thickening, stiffening, and even folding back upon itself, I know they are keeping a close eye on the phenomenon. And yet --
They don't really know how to stop it.
They aren't the tiniest bit clear on why it happens.
They don't know what day J. will wake up just a little stiff, and what day he will be at work and suddenly have such a searing pain in his hip he has to ask someone to drive him home because it hurts too much to drive.
And when we try out a treatment, ANY of them, from any tradition - they have very little good idea if it will work. "Work" meaning, lessen the pain, slow the thickening, convince J.'s body somehow that really, his own joint lining is "us," not "other."
So when one of them tries to tell us, after our seven years of diligence, that "That's not long enough," I want to step on their toes and yell at them. Really, you're confident that if we just stick it out eating gluten-free for another six weeks, we'll have a clear answer? Just like you were confident we'd have a clear answer after the first five? How about all those months we spent letting MDs check his blood sedimentation rates, or letting NDs burn his stomach with oregano oil capsules, while we waited for a diagnosis - that wait doesn't count for time served? Or the additional months he deferred starting methotrexate, a known teratogen, so we could try to conceive our son, even though his wrists sustained irreversible damage and he could hardly pick anything up during that time? Or the year he had to take the steroid, adding weight that is now hard to lose and that sucks his remaining energy?
Encourage us in our struggling exploration. Admit that you only know a few people who have turned it around significantly by eliminating wheat. But don't cavalierly stand there, enjoying your theories and effortlessly moving your joints and eating a burger for lunch, and tell us that we just haven't tried hard enough. We're trying, and you're trying my patience.