Hi Beth. It's been way too long since I've checked into this forum. Interesting that you have been trying out the Wahls Diet to find out if it would help with your RLS/WED. I have been on a similar journey with diet, since December 2013, when I stopped eating gluten. I did it to find out if it would help with my narcolepsy and cataplexy though; my WED being under good control with methadone.
I read a series of books that inspired me to try going gluten free. First I read Wheat Belly, then Grain Brain. Then I joined a Facebook group for gluten-free people with narcolepsy, and that group has been a huge source of support and information. The group was reading The Wahls Diet, so I joined in and read that too. Having had gastric bypass surgery, I found the volume of vegetables to be overwhelming, and had been eating veganish for 3 years, so all those organ meats seemed like a difficult goal to achieve.
From there I was introduced to The Perfect Health Diet (PHD Diet), which really goes into the science behind how much to eat of what, and how many carbs are truly optimal. They recommend some intermittent fasting and about 100 grams of carbs a day. The authors are both PHD level scientists, so they are all about the research.
Anyway, about 3 weeks after giving up the gluten, I started to come out of the fog, and really wake up. I started to have energy again, like I had had 30 years ago, before I started feeling like I always needed a nap. After that, there were a couple times that I ate some gluten-free oats, and within about 20 minutes I had an overwhelming sleep attack, along with some mild, but long lasting cataplexy. I no longer eat oats!
I have remained gluten-free since that time, except for part of a piece of cake that a waitress told me was gluten-free, which turned out not to be. I had narcolepsy again for the next 3 weeks.
But, for the most part, eating a gluten-free, low dairy, high fat, low carb diet has me feeling so much better that it's worth the inconvenience of having to cook my own food almost all of the time. I no longer need Adderall to stay awake during the day, but get by with an e-cig to provide a small bit of stimulation and focus for my scattered brain. I take Xyrem at night, which gives me the deep, restorative sleep that I need, and once that is out of my system I go about my day without the need to nap. It's truly been a miracle.
The one thing that did not improve, but got much, much worse, was my RLS/WED. The methadone was no longer controlling the symptoms well and I had to take a bit more, and then even had breakthrough symptoms. I asked my neurologist about it, and he said that the gluteomorphins from the wheat were likely helping suppress the RLS.
I do not eat enough organ meats, though. In the Wahls Diet, you can substitute seafood for organ meat, and I do eat a lot of that. My spouse is vegetarian and so is my daughter. My daughter refuses to acknowledge the changes in my from being gluten free, and views any discussion of it on my part as trying to force her to give up gluten too. She has been quite angry with me over the whole issue. Fortunately she has also started to eat seafood and fish again, as does my dh, so at least we can all compromise on veggies and fish/seafood for family meals.
I have been trying to heal my own guts with fermented foods, like sauerkraut, and kombucha. I just can't afford a lot of testing, but did the 23andMe genetic testing. I do have the high risk celiac gene, what is known as HLA 2.5. And I do wonder if I have that because of my complete and total inability to absorb iron and the extreme symptoms I get from eating gluten. I may never know because I will not eat gluten so that I can be tested for it. I also had extreme heartburn symptoms for many years and took omeprazole to manage that. Once I ditched the gluten I was able to go off of the omeprazole.
I truly applaud your efforts, Beth, and your ongoing reporting on how you are doing. I'm glad I signed in here today and saw this thread. I wish all of us relief of this evil affliction called RLS/WED.