So, after 10 years of living with ME/CFS in our household (10 for me, and 8 for each of our sons), we are embarking on a new CFS adventure: Jamie and I are going to try going gluten-free and dairy-free (as I am already) on the advice of a new specialist we are consulting. The kids are away sailing with their grandparents this week, so I am attempting to prepare for this gastronomic adventure, by learning what I can about gluten and restocking the fridge and cupboards.
Here's a little background in case you are wondering why we are doing this now....
I discovered I'd developed an intolerance to dairy pretty early in my illness - maybe around the second year, just after getting diagnosed. I think maybe Dr. Bell had mentioned to me when I told him about my GI problems that some people with CFS develop food allergies and intolerances. I tried two weeks without dairy and didn't really notice much difference, but when I added dairy products back into my diet, I had a severe reaction and could plainly see the cause and effect. So, I have been mostly dairy-free for about 8 years or so. I have long suspected that my problem was more than just lactose intolerance. I can cheat once in a while, with a small scoop of ice cream or a bit of cheese, and Lact-Aid helps somewhat, but if I have dairy two meals in a row - or even two days in a row - then things get really bad again, in spite of the Lact-Aid.
So, fast-forward to now. If you read this blog regularly, you know that Jamie, 17, has had a really horrible year. On top of his CFS, he also has Lyme disease, bartonella, and babesia (3 tick infections that we suspect he has had for 5 years), and he reacted very badly to his treatment for these infections. It's normal to experience a period of worsening ( a herx reaction ) when treating a long-term infection, but Jamie was totally incapacitated for about a year.
One of the avenues we have been investigating, with his Lyme doctor, has been the methylation process in his body. Our doctor said that his severe response to treatment showed that his body was having trouble clearing out toxins (i.e. both the meds as well as dead bacteria and other bugs), so I did some research on my own and started Jamie on a modified methylation protocol , designed to help people with CFS to clear this blocked process. I think that might have helped a bit, and Imunovir has helped him more, so he is managing better these days but still not well enough to handle full-time school...and college starts next month.
So, our Lyme doctor told us about a specialist who'd helped some of his other patients. She's a biochemist and a registered dietician, and she works with people with a variety of chronic illnesses. Her approach is to take a detailed history of the patient and the illness, including diet; run a bunch of tests to see what nutrients are not being absorbed properly, what nutrients are low, etc.; and then suggest a diet and supplements based on that individual's own needs.
We decided to give her a try, so my husband and I met her by Skype a couple of weeks ago and told her Jamie's long and complicated history of his illnesses. I tracked Jamie's diet for a few days and faxed that to her, and we had a second Skype meeting. To be honest, I expected her to compliment me on our healthy diet. After all, we eat lots of fresh fruits and veggies, lean meats and fish, skim milk for Ken and the kids, and mostly whole grains. Instead, she was appalled! Jamie was with me on Skype and heard her ask, "Why is he eating wheat and dairy products at every meal?"
She told us that even without running the tests on him yet, she knew she would be recommending a gluten-free and dairy-free diet. Jamie was stunned and fairly upset by this pronouncement. She explained that, for someone with CFS or similar illnesses, it didn't even matter whether they were actually intolerant to gluten or dairy because gluten and casein (a milk protein) both block one of the primary methylation pathways in the body. So, for someone who is already struggling with blocked methylation processes, gluten and casein just make things worse.
So, we will be trying a gluten-free and dairy-free diet. I figured I might as well try it along with Jamie, both for moral support and because maybe it will help me, too.
But I am in need of help! I have less than a week left to figure out how to do this. If you have any advice or tips for me, I would appreciate it...maybe your favorite gluten-free products, how to make a good flour substitute (that will be a priority for me), where on the web to find information on going gluten-free, or your favorite gluten-free recipes.