Update on Our Gluten-Free/Dairy-Free Diet

This post is long overdue, but things have been very busy around here.  Way back in July, I wrote that my son, Jamie, and I would be trying a gluten-free/dairy-free diet on the advice of a consultant.  Since then, some of you have asked how it's going and whether it has helped, so here is a recap.

Jamie, 18, was dairy-free for 9 weeks and gluten-free for 14 weeks; he has now added both back to his diet, though in moderation.  He does think he may have some mild dairy intolerance: he notices some GI symptoms after drinking skim or low-fat milk but not as much after eating ice cream (which he ate at every meal after being dairy-free for 9 weeks!).  This makes sense if he has a mild lactose intolerance - the lower the fat content in dairy products, the higher the lactose content.

As for me, following the strict no-dairy diet only reinforced to me how severe my dairy intolerance really is, and I am trying to remain completely diary-free.  With no dairy at all in my diet, my GI symptoms cleared up amazingly.  I've been cheating a bit since Halloween, with all the yummy candy bars in the house, and I am starting to have trouble again.  As Jamie says, "It's a slippery slope, Mom!"  He's right - when you start cheating a bit here and there, it is easy to fall out of the habit.

Like Jamie, I have added gluten back into my diet just recently but in very small amounts.  I am still eating gluten-free bread when I want a piece of toast and sticking with gluten-free flour when I bake.  I have, however, added oats back to my breakfast options, though not every day.  I found that the gluten-free diet had an unexpected negative effect: it left me quite constipated, in spite of all the fruits and veggies I eat.  I guess all those whole grains were doing their job!

It is hard to say whether the restricted diet helped either of us in terms of energy and overall health (which was our reason for trying it).  I certainly didn't improve over the past 15 weeks - in fact, I haven't had a very good fall generally.  Jamie has improved - stunningly, in fact - but we tried so many new things all at once in August and September, in an attempt to allow him to manage college, that it is hard to tell what helped.  He believes that beta blockers, started the week before college, are the main reason for his miraculous improvement, and I think he is probably right.  But we also changed his diet and started about a dozen new supplements over this time, so it is impossible to tell exactly what helped the most, even though I tried to add new things one at a time.

In addition, I believe it is entirely possible that the diet restrictions helped him get past the very low point he was at, even if the effect isn't obvious.  We know that blocked methylation processes were almost certainly an issue for him (see previous post), based on his extreme reaction to his treatment for tick-borne infections.  Gluten, casein, and gliadin (a protein similar to gluten found in oats) all block one of the methylation pathways in people with illnesses like ME/CFS, so perhaps the diet helped to unblock that pathway, and once it was working more normally, Jamie's own body was able to take over and continue to improve, even with adding some dairy and gluten back in recently.  Jamie is also tolerating his Lyme meds better - after 18 months, he is finally up to a normal dose of doxycyline! - and that may also be due in part to the dietary changes.  We will probably never know exactly what role diet played in his improvement, but he and I are both on the look-out for any regression now that he has dropped the restrictions - so far, so good!

I planned to include some tips for cooking gluten-free and dairy-free, but that will have to wait for another day, since this post is already so long and I really need to get some other things done this morning.  So, look for those in an upcoming post.  I'm interested to hear whether others have seen improvement in energy and overall health from restricted diets.