RLS, SIBO & LEAKY GUT

I don’t frequently get personal in my blog posts, but I really need to share what’s going on with my health as it relates to Restless Legs Syndrome. I know others with RLS read this blog, and while I’m by no means cured, my symptoms have greatly diminished and I’m on a path to being cured. CURED!

A quick recap. I started to experience mild RLS in 2010 when we gave up meat. I first blogged about it in 2013 when it was still a minor nuisance that would come and go.

By last summer, my RLS occurred every night and was excruciatingly uncomfortable, but taking drugs to make it tolerable did not appeal to me. I wanted a cure.

The first thing doctors look at when a patient presents with RLS is their ferritin levels. Secondary RLS can occur when iron levels are low. Primary RLS, they say is hereditary and currently there isn’t a cure for it. So my hope last fall was that if I could get my ferritin up, then the RLS would go away.

The year prior my ferritin tested quite low and my doctor put me on an iron supplement. This past fall I tested again and my ferritin hadn’t budged, so after 6 years of being pescatarian, I introduced meat back into our diet.

By January this year, my labs significantly improved, however, my legs had not. I also tried making an honest effort to go gluten free and dairy free. I previously hadn’t given it much time, and read that gluten can take months to get out of the system, so I thought I’d give it another go.

I actually saw some improvement, but not enough to write home about. Two interesting things happened for me in January. One night I took NyQuil and had a horrific night. (NyQuil is actually known to trigger RLS, but I figured since it hadn’t caused me trouble in the past, I was safe. I was very wrong). A couple weeks later, I was feeling sorry for myself and wanted ice cream. That night, I paid the price.

These two events made me realize that there is a direct correlation between what I put in my body and how my legs react. From that point on, I kept a detailed food diary and found that I reacted to tomatoes, red peppers, asparagus, spinach, turmeric and ginger.

I’ll skip over all of my paths of investigation this led me down, but one day I found this doctor who claimed that a high percentage of patients with RLS also have something called SIBO (small intestinal bacterial overgrowth), and when he treated the SIBO, the RLS would go away!

Now that caught my attention. I managed to get a SIBO breath test mailed to me while we were in Florida and surprise surprise, I tested very positive for it. (I’ll skip the details).

Unfortunately, what came next was a huge mistake on my part. Shortly after I took the SIBO test, I was prescribed antibiotics. I hadn’t taken any antibiotics in at least 15 years, so I didn’t really think twice about it. I broke the no-dairy rule and had yogurt every day during the 10 day course to keep my gut healthy, but that wasn’t enough. Instead, I had a terrible reaction and ever since I experience bloating and pain after every meal which are very common SIBO symptoms.

So I think I made matters a bit worse with that.

Since the diagnosis, I’ve extensively researched the topic and found a Functional Diagnostic Nutrition Practitioner to work with. For the past four weeks I’ve been on something called the BiPhasic diet. My RLS is down to just foot tingles that are somewhat managed with Restiffic foot wraps (I have a love hate thing with these wraps. They help, but I hate them).

My diet is so limited now, that when I introduce a new food or supplement into the mix, one of 3 things happens. One, I get bloating and stomach pain which means I’m not ready for the new food (ie. a half of a banana). Two, the RLS flares up (ie. ginger supplement). Or three, nothing happens which is the best possible outcome.

So this is what’s happening, based on my understanding. SIBO (among other things) can cause something called leaky gut. Leaky gut is increased intestinal permeability resulting in substances leaking into the bloodstream, and a tell-tale sign of leaky gut is food intolerance.

For awhile I’ve been saying I feel “poisoned” when I eat certain foods, and the good news is, all of this is fixable! SIBO is supposed to be very hard to get rid of, but I haven’t read that about leaky gut. I’ll soon find out.

I start my SIBO treatment on Saturday. I’ve had to hold off while I’m traveling for work (apparently it might make me feel quite ill), and I’ve been working on gut repair for the past month which includes limited diet, digestive enzymes, beef bone broth and coconut oil in my tea.

If you have severe RLS, I would highly recommend testing for SIBO. If you have RLS and don’t have SIBO, I’d recommend testing for leaky gut. To me, this is the discovery of the year and while it totally sucks to be dealing with this, I couldn’t be more excited to know that there is a solution and my Restless Legs Syndrome is not a life sentence.

Two new favorite things I’m eating on this diet:
Lemon Raspberry Gelatin Gummies (I love these, plus the proline and glycine is good for repairing the small intestine.)
Ghee (I had no idea how tasty ghee is!)

Additional Info:
SIBO Info – most comprehensive site on SIBO
Restless legs syndrome in patients with irritable bowel syndrome: response to small intestinal bacterial overgrowth therapy.

*Disclaimer – I’m not an expert in any of this and I may be off way track. That said, I’ve been listening to a SIBO podcast where the host used to have very bad RLS and now it’s completely gone. RLS can be a very hopeless condition and I finally have hope (and some dorky leg photos).

2017 Cost of Camping:
12 nights free camping
92 nights paid camping – thru 4/14
104 days this year
Total spent on camping this year: $3853.90
Daily average cost of camping: $37.05

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21 Comments

  • Reply Tabitha Acosta April 10, 2017 at 8:02 pm

    I have celiac and am completely gluten free and NEVER have relief from my symptoms. I always test anemic. I always feel like I am being poisoned by food and let’s not even talk about the bloating – ridiculous. I’m certainly going to check out leaky gut and SIBO.

    • Reply Leigh April 11, 2017 at 4:57 am

      Oh girl, we need to catch up. The good news for you is that Portland, OR is the epicenter for treating SIBO in the US. Check out The Healthy Gut podcast and start from the beginning. The first few are really good and will give you good ideas for practitioners in the area. xoxo

  • Reply Tim Lavalli April 11, 2017 at 5:30 am

    Just an excellent and informative post, you should do more of this when you venture out into the wide web of research on any topic.

    • Reply Leigh April 11, 2017 at 6:07 am

      Haha! Thanks Tim.

  • Reply Rick April 11, 2017 at 6:37 am

    I’ve dealt with both IBS and RLS for over a decade now and never have thought the two could be connected, so thank you for enlightening me. It is an ongoing investigation with myself with only hope for a solution. The pain really brings me down but I’ve done better at managing it lately. Thanks for post and the resources you provided. Maybe there is more hope than I bought. Take care!

    • Reply Leigh April 12, 2017 at 6:36 pm

      I’m so sorry to hear you have both IBS and RLS, but excited that I may have tipped you off to a solution! Please keep me posted on your progress.

  • Reply Kelly B April 11, 2017 at 10:29 am

    I suffered from restless leg syndrome pretty bad when I lived in Atlanta back in the late 90s. It has come and gone ever I suffered from restless leg syndrome pretty bad when I lived in Atlanta back in the late 90s. It has come and gone ever since. It hasn’t been nearly as bad or consistent. I’m not sure what I was doing her eating differently back then but I’m so happy not to struggle with it a lot now. I can be quite maddening and frustrating. It hasn’t been nearly as bad or consistent. I’m not sure what I was doing her eating differently back them but I’m so happy not to struggle with it a lot now. I can be quite maddening and frustrating One thing I did figure out was that ice cream definitely set me off! I’m glad you’re figuring it out and if it comes back for me, I will get that test done. Thanks for the info!

    • Reply Leigh April 12, 2017 at 6:35 pm

      Oh I had the worst night after my little haggen daz slip. I’m glad you’re better, I need to join your club! 🙂

  • Reply Kelly B April 11, 2017 at 10:30 am

    Thanks, Siri. Sorry, didn’t review my post before I sent it!

    • Reply Leigh April 12, 2017 at 6:35 pm

      Haha no worries.

  • Reply Pat hayes April 11, 2017 at 11:55 am

    I read your post with consternation–and a lot of hope that you’re on your way to real relief now. We send you love and good vibes–be well soon!

    • Reply Leigh April 12, 2017 at 6:33 pm

      Thanks Pat! xoxo

  • Reply Heidi April 12, 2017 at 8:01 am

    Let me just recommend Medical Medium. I know he may sound slightly “out there” but try it and see. You will be greatly surprised. 🙂

    • Reply Leigh April 12, 2017 at 6:33 pm

      Thanks Heidi, I’ll be sure to check him out. 🙂

  • Reply Kerensa April 12, 2017 at 8:06 am

    I’m glad to hear you’re making progress! I hope this the path to a cure for you.

    • Reply Leigh April 12, 2017 at 6:33 pm

      Thanks Kerensa! Me too!

  • Reply Pamela Wright April 13, 2017 at 7:41 am

    So glad to read that you are finding relief with your RLS. I can’t imagine what you have gone through each night. Sure hope things continue to improve and you finally have full comfort:) Thank goodness for the internet!

  • Reply Lori Adler April 30, 2017 at 9:35 am

    Hi,
    I enjoy your site and have been meaning to send a you note re. this post. I’m acquainted with several people who have had complete resolution of chronic ailments associated w leaky gut syndrome. This was accomplished with a water-only fast followed by a health promoting plant-based lifestyle. An inflamed digestive system will heal and normalize with the complete rest that fasting provides. Check out some of the articles at the True North Health (Santa Rosa, CA) website. And here is a short video by one their staff M.D.s, Michael Klaper, re. Leaky Gut Syndrome. http://doctorklaper.com/videos/curing-leaky-gut-syndrome/
    Best regards!

  • Reply Lori Adler April 30, 2017 at 11:21 am

    Hello again,
    I forgot to add my hope that, in your info. explorations, you find some of the documented studies which confirm that there is no correlation between iron deficiency in humans and the presence/absence of animal products in the diet. It seems that this deficiency (along w many others) is, rather, a problem of poor absorption; i.e. the inability of proper uptake of nutrients from the small intestine to the blood — another indicator pointing to a gastrointestinal issue…

    • Reply Leigh April 30, 2017 at 12:07 pm

      Hi Lori, thanks for your comments and the link in your previous message. Everyone is different and must do what works best for themselves. 🙂

  • Reply Katherine May 1, 2017 at 12:19 pm

    Thank you for posting all your trials, my husband has MCS, and has developed a gluten allergy along with it, as well as having had RLS since I’ve known him, as does one of my daughters who is now 18. I am trying to get him to look at the diet aspect more closely as I suspect it would be helpful with the MCS as well. Please keep posting, I also suspect there are many out there that struggle with this or various aspects from IBS to RLS, and beyond! As you said, everyone must find what works for them and the more tools and info one has to choose from the better! Best of luck in improving your health!

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