jess running

Running

jess running

Running has played a huge role in my ability to cope with and heal from celiac disease and my other autoimmune issues.

Although I ran track in middle school and high school (sprinter), I really struggled with endurance and running during my undergraduate and medical school years due to anemia, fatigue, and chronic joint pains–symptoms which, looking back, were probably due to undiagnosed celiac disease. I vividly remember trying to return to running after having my 2nd child in 2008 when I was 30 years old. I was trying to get in shape via a podcast program called “Couch-to-5K” and I felt like I couldn’t catch my breath. It was freezing cold outside, I slipped on ice and fell, and started crying on the side of the road because I felt out of so out of shape, sore, cold, and helpless. By the time I worked my mileage up to a 5K I was pregnant with my 3rd child (she was born 17 months after #2), and after she was born I got very sick from celiac disease.

After my celiac diagnosis in March 2010 and starting the GF diet, I found that I was able to pick up running again rather quickly, as I felt healthier than I had in years. I trained for and ran my first 10K, the Green Bay Bellin Run, in June 2010.  This was followed by my first half-marathon in September 2010, and I’ve completed multiple half-marathons since then. I ran my first marathon, the Cleveland Rite Aid Marathon, with my friend Melinda in 2013, and as of writing this post I am training for my 3rd marathon.  I’ve also participated in several relays, have been able to volunteer with my daughter’s school’s running club, and am part of the Celiac Disease Foundation’s Team Gluten-Free for 2014.

marathon

Mel and I before the Cleveland Marathon in May 2013. I am in purple on the left.

Since my celiac diagnosis I have run with neighbors, cousins, and friends, through heat and the Polar Vortex, across bridges and along beaches, at the crack of dawn and in the middle of the night. It is when I am on long runs I find that I am able to be truly in the moment and feel connected to the world. Running is my therapy and it makes me a better person, wife, and mother.

I’ve been asked by many for tips on running with celiac disease. From my personal experiences, I’ve found that the following things help me. Please keep in mind that we all have different experiences with celiac disease, so what helps me may not help you (and vice versa).

Diet: I am 100% gluten-free and I never cheat. In the weeks leading up to races I minimize processed foods as much as possible and eat tons of green leafy vegetables, lean meats, bananas, and sweet potatoes.  I do increase my intake of GF carbs prior to long distances, including brown rice pasta, risotto, squash, and GF oatmeal. I am soy free, sulfite free, and dairy light. The Paleo diet did not work for me when I tried it in 2012.

If I am travelling for a race, I scope out restaurants far in advance and I rely a lot on social networking for recommendations for gluten-free, celiac safe recommendations. Laura from the Gluten-Free Traveller and Erin from the Gluten-Free Globetrotter have been very helpful. I also make a ton of phone calls to possible restaurants in advance.  I also always travel with a stockpile of emergency gluten-free food, including Zing Bars and Vigilant Eats Superfood Oat-Based cereals.

Hydration and Electrolytes: I bring water with me on any run greater than about 3 miles and use Nuun tablets for runs greater than 7 to 8 miles. All flavors of Nuun tablets are gluten-free and I’ve found that my system tolerates them much better than Gatorade. I do sip Gatorade when I run through aid stations during the half and full-marathons though.  I use the vanilla flavored Gu Energy Gels for runs longer than a 10K. Although all of the Gu Gels are GF, vanilla are the only ones that do not given me GI distress.

Yoga: I go to a heated Vinyasa yoga class 1 to 2 times a week (less the weeks I am on service in the NICU or travelling). I use my yoga sessions for stretching, strength training, and flexibility.  Since starting yoga I’ve had less injuries and the I-T band issues that developed during my first year of distance running have disappeared. Yoga seems to also help my body to reset quicker after getting “glutened.”

Accidental Gluten Exposures: This usually happens while I am travelling because our entire home is GF. I am not able to run at all within the first 24 hours of getting glutened because I usually feel like I’ve been food poisoned.  If I have a long run planned and am in the middle of training for a race, I just delay the long run by a few days. If it’s a short run I skip it totally and try not to worry too much about making it up.  I drink as much fluid as I possibly can after I’ve been glutened and try to take at least a brief walk the day after. Fortunately, with time and experience, the accidental gluten exposures have happened less and less.

Finding Time to Run: I bring a gym bag with running clothes, sneakers, and deodorant in it everywhere I go, so that I can fit short runs in if the opportunity presents itself. I have run on a treadmill in the rehab room at my hospital and I have run laps around playgrounds while my oldest kids have been playing. Just last week I dropped my niece off at a day camp on a college campus and I fit in a 3 mile run on the campus trails.  I literally “run” my errands as often as I can, and have run to pharmacies, Redboxes, the library, and the grocery store. I do not care if people see me when I am sweaty and/or stinky after running.

Following Blogs of other Runners with Celiac Disease: Here are a few that come to mind and inspire me. I am sure that I am forgetting some and will add them as I remember.

1. Rececca from Eat, Run, Crash.

2. Laura from G-Free Laura

3. Kim from Gluten Free is Life.

I plan for this page about running with celiac disease to be a work in progress. If you’re also a runner, and/or would like to start running, and have celiac disease or non-celiac gluten sensitivity, please feel free to leave a comment, introduce yourself, ask questions, etc. I’d love to meet and connect with you.

30 thoughts on “Running

  1. Michelle C

    I’m so glad I found you Jess! I look forward to reading more from you as it sounds like our journeys have a lot in common. I was diagnosed with Celiac Disease a couple of years before you and our running paths are very similar.

    1. Jess Post author

      Hi Michelle,
      Thanks for introducing yourself. I look forward to being able to chat on here from time to time.
      Please feel free to pipe in with advice, comments, etc at any time. I am always looking for suggestions GF fueling both before and during races.
      Happy running!
      Jess

    2. Annette

      Hi~ My story is very similar to yours. A few years ago I had worked my way up to the half marathon distance and set my sights on running a marathon. I loved running, but I was continually sidelined by injury, fatigue, and debilitating headaches and vertigo (which I now know were probably a combination of gluten and my gallbladder not functioning…due to gluten!) I was diagnosed with celiac disease a year ago (almost to the day, actually!) and haven’t run much since. Trying to get my diet under control was a nightmare, because even going gluten-free didn’t make me feel better (turns out I was/am also sensitive to dairy, eggs, rice, nightshades….and a host of other things). I eat a paleo diet now and am finally regaining my health enough to consider running again. My biggest concern is fueling properly so I’m glad to have some insight in that department. Someday I would love to run a marathon for celiac disease awareness! Thanks so much for sharing!

      1. Jess Post author

        Hi Annette,
        Thanks for introducing yourself. Yes, it can take a long time to heal and I was unable to train for my 1st marathon until I was at about the 3 year GF mark. I had to do a very detailed food journal to figure out all of my additional food intolerances. I feel awful if I eat anything with soy or sulfites.
        It sounds like you’ve done an awesome job of figuring out your other food issues too.
        I started to use almond flour a ton when I tried Paleo in 2013 and I’ve continued to use it in a lot of my baking. It also helps me to keep my caloric intake up as I increase my mileage.
        I hope to post a bit about running on here from time to time, especially as I train for Team Gluten Free, so please feel free to share info, comment, etc. whenever. Being able to interact with other GF people is what motivates me to keep this page going!
        Jess

  2. Cherish

    Glad you started this. I’ve been running three years but still feel like a ‘baby runner’…probably because I’m still slow. I started running about a year before my diagnosis, and I found it was one of the few things that actually made me feel better. I’ve wondered if this reduced the inflammation or did something to help my symptoms. Either way, I still enjoy it. And I found that potato pancakes are perfect for carb loading. :)

    1. Jess Post author

      Hi Cherish,
      Like you, it took me a while to consider myself a “runner” and I feel better when I exercise too.
      When you get a chance, I’d love your potato pancakes recipe. My grandma used to make them when I was really small, so I don’t believe I’ve eaten one for about 30 years!
      Hope you’re having a good summer.
      Jess

      1. Cherish

        Potato pancakes are super easy if you have a food processor. I use 2-3 lbs. of potatoes (red are really the best), peel and shred them on the fine setting with my food processor. Then I add about 1-2 tsp of salt mixed into the potatoes. Let them sit for 10 minutes in a bowl. After the 10 minutes, drain off the liquid. Mix in two eggs and about 1/4 cup potato starch and cook in butter or bacon grease over medium heat until browned on each side. (I’m guilty of the bacon grease because we almost always have bacon with them…I’m not sure why.) The potatoes may look slightly brown before you cook them, but they turn white again in the heat. I hope that’s easy enough to understand.

        Back on the running thing, have you tried sports beans? I couldn’t handle the sorbitol in nuun, so I’ve gone with a combination of orange sports beans (which are fodmaps friendly – the extreme ones are not and don’t taste all the great, anyway) and gatorade, but I even add salt to the gatorade. I was training for my half and found out that I lose salt much, much faster than I thought possible. (One of those stupid things that was causing me fatigue and I thought was celiac related…and ended up being something different but very easy to fix.)

  3. Nicole Gulick

    I am so grateful to have found your site. I have been a runner since high school, had to quit track/cross country in college because I had severe anemia and could not finish workouts. Fast forward 15ish years later and I find out after the birth of my 3 rd child that I have celiac disease with oesteopena because it had been undiagnosed so long.

    I love running. I’ve been a runner for over 20 years and it is a part of who I am. Complications while running brought my celiac disease to the forefront and for that I will always be thankful.
    It’s ironic, I love Nuun, drink it daily, use vanilla Gus and only drink gaterade at water stops in marathons :). I also drink Generation UCAN and find it to be a wonderful way to hydrate, fuel, and maintain blood glucose levels.

    Thank you so much for your site. I’ve been reading the a articles and appreciating the medical studies on celiac disease. I am especially looking at what to do with my three children who have all been tested, have the gene, and I’m trying to determine how often to retest. Thank you for all you have posted on this.
    Glad to have found you! Happy running!
    Nicole

    1. Jess Post author

      Hi Nicole,
      Thanks for introducing yourself. It sounds like we have a LOT in common and that our celiac running bodies have similar preferences. I’ve yet to try Generation UCAN though, so thanks for the suggestion.
      Out of curiosity, were your #2 and #3 closely spaced? I ask because I sometimes think that the 2 back to back pregnancies are what really tipped me into becoming a full-fledged celiac.
      As for our kids, we are doing celiac panels every 2 years as long as there are no symptoms, but it’s been difficult to find a consensus on this. Please let me know if you come across any helpful info in this regard, as I would love a concrete answer, if one exists.
      Happy running to you too!
      Jess

  4. Erica

    I was so excited when I saw your post on FB this morning about starting this page. I was training for my first ½ when I started getting symptomatic again (the first symptomatic time was after my 2nd pregnancy-babies 19 months apart). Fast forward 10 years, training derailed by undiagnosed celiac (Gastro called it “latent”). Thanks again Jess.

    1. Jess Post author

      Hi Erica,
      It’s nice to see you on here (I actually just edited this because I didn’t see your last name at thought you were a different Erica!) As long as I continue this page I hope to write about running and celiac as there’s not much out there on the topic.
      I have a theory, as I just wrote in a comment above, that it seems like closely-spaced pregnancies can be a “trigger” for celiac…I have no science to support this, but it seems like there are too many of us for it to be a coincidence. Not really related to running at all, but something I find interesting.
      Have you been able to resume running since your diagnosis?
      Jess

  5. Erica

    Hi Jess
    I have “The Gluten Free Edge” and wanted to ask you your opinion on recommending it to a friend who’s daughter runs H.S. track and has experienced a couple of what she termed “significant injuries”. They have since tried a GF diet during training (I’m not sure if she is on it full time but they said they try to avoid it on the regular basis as much as possible; they don’t believe their is GS or CD in the family but….). She was asking me about inflammation and gluten, etc.; I said I wasn’t qualified to really answer but I referred her to your blog but I did mention “silent celiac” and other celiac or GS presentations. I wanted to recommend the book as well but my specific question for you is this: Do you think the book is okay for a teen to use as a guide—developmentally I just wasn’t sure. I have not read it cover to cover enough to know.

    1. Jess Post author

      Hi Erica,
      Sorry for the late reply. I think it would be good for an older teen, probably age 16 and up. I’ll let you know if I come across any resources that would be age appropriate if she’s a bit younger.
      I took a much needed “vacation” from blogging, but I’m back now.
      Hope you’re doing well!
      Jess

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  7. Melanie

    I found your blog soon after my first blood test came back positive for celiac, and have found it a regular source of information and inspiration – thank you! I found my way to a celiac diagnosis while trying to get to the bottom of constant, low-level joint pain that has been bothering me for the last couple of years. I’ve been GF for about four months now, and I’m feeling better in lots of ways, but I can’t tell yet whether it’s going to resolve the joint pain. I’ve heard it can take six months, so I’m waiting anxiously. I’ve never been a runner, but I’ve been so excited by the thought of having hands and feet that don’t hurt, that I’m thinking about taking it up if the celiac turns out to have been the cause of the joint pain. Running has never sounded like much fun before, but now I can totally see myself running…just from sheer joy. :)

    1. Jess Post author

      Hi Melanie,
      Thanks for introducing yourself. I am glad to hear that you are feeling better after being diagnosed.
      The joint pains did take a while to totally resolve after going GF, and they are one of the symptoms that return every time that I am glutened, but things have definitely gotten a ton better with time. I hope that you have a similar experience and can grow to enjoy running too. It’s one of the only things keeping me going these days.
      All the best to you.
      Jess

  8. Tracy

    Hi I just ran a few 1/2 marathons and tough mudder and had an awful pain under my left rib cage and felt so terrible… I had a few tests then blood test came back as celiac disease. I’m only two weeks in and still have the pain… I am totally gluten free and trying to cope with the idea of not living the way I did before. I’m curious if anyone has had this pain and it’s now over a month with the pain. Any idea how long it will last? Any help will be appreciated. Just a bit overwhelmed by it all

    1. Jess Post author

      Hi Tracy,
      I hope that you start to feel better soon. Have you had any improvement at all on the GF diet?
      I experience the exact pain that you describe every time that I am “glutened,” even if it’s the smallest exposure through accidental cross-contamination.
      I had a lot of accidental exposures during my 1st year on the GF diet, even when I thought I was being as careful as possible. It’s been a lot better since then as I get exposed much less frequently (but, yes, I get the under ribcage pain every time, feels like I am being stabbed at times).
      I wish you the best. If you are not feeling any better by the 3 month GF mark, please make sure to see your physician and a dietician for a check.
      Good luck!
      Jess

  9. Cindy Kusyk

    I have not been diagnosed celiac however the more research I’ve done, the more I’m starting to think this could be my problem. I am a runner and I’ve always know that my stomach gets sick after racing or when I really exert myself. This past Sunday I did a half marathon and pushed myself pretty hard so that I could beat my previous PR. My tummy did not feel well after but I still ate the eggs benedict brunch! I got home and by stomach was burning. I was in the bathroom all day and I noticed blood in my bms. Sorry gross but it definitely scared me. It is now a week later and I am still feeling awful. I’ve had a headache all week and my stomach is still sick. This morning I actually feel worse. I went for a fast run last night with my running club and had some beer. Not enough to feel hungover like I do today though. I have a much worse headache and feel nauseous today. I have note been eating well lately whereas I tend to not really eat gluten just by choice. I have been eating bread and noodles and packaged foods quite a bit. I also have been very dizzy like when I was hyperthyroid after one of my babies was born. Thinking I might go see a naturopath instead of just my gp. Need to figure this out because I can’t keep running like this.

    1. Gretchen

      Hi, Cindy. Since your post is from February, I’m guessing some progress on a diagnosis may have been made, but I had similar symptoms as you described before I was diagnosed and would definitely encourage you to see someone if you haven’t yet. I ran a half marathon in August of 2014 and I am a veteran runner, having run track and cross country in high school, several marathons, a full Ironman, a half Ironman, and shorter distance triathlons in my 20s, so to feel lousy for a full week after was unusual. Like yourself, I spent a lot of time in the bathroom the week following the race, and the icing on the cake was blood in my stool. I saw a doctor who referred me to a GI specialist who thankfully tested me right away for CD. I was officially diagnosed in November of 2014 following an endoscopy. I too have two children who are 22 months apart. I think it was my pregnancy or birth of my second child that triggered my symptoms.

      I am training for my first marathon since 2009, but I am suffering from fatigue and continued bowel distress. Looking to discuss suggestions on how to overcome this when I’ve been very diligent and careful on my GF diet since November. I get as much out of my system before going running and generally take an Imodium if I’m heading out longer than six miles. Not having run in two days, I’m sitting here with “gut rot” and have to run 10 miles tomorrow. I’m kind of dreading it the way I feel right now.

  10. Leidy Suares

    Hi Jess,
    As I wrote in another post, I used to exercise a lot, but since 1 year ago, due to my undiagnosed non-celiac gluten sensitive. I stopped almost completely. I began the GF diet two months ago, and I am improving. But I am still having pain in my hips. I am waiting because I want to run again. I want to run again marathons. But I think in my case it is more complicated because I have scoliosis. I need to be sure that the damage caused for my undiagnosed illness didn’t damage my bones or joints. I am waiting for an appointment with a rheumatologist in two weeks. I hope to tell you good news. Meanwhile I am becoming follower of you. You are my hero. Run half a marathon just six months after diagnosed is amazing. I hope that I can do the same. Thanks for sharing such amount of detail about your evolution after beginning the GF diet. It helps a lot.

  11. Rick

    i notice that most if not all of the respondents are female. Is celiac and intolerance a predominatly a female issue? And for the male, is there anything we should be aware of that is gender relative?

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  13. Karen Kelso

    Happy to have found your blog. I have been GF for about one year now and have tried to get back into my running routine which used to be 3-5 miles as day 5 or 6 days a week. My problem is that I cannot seem to keep my vitamin levels where they need to be. My iron is the main problem. I can take the maximum amount of iron my doc will allow for a few weeks and get my ferritin up to about 50, but as soon as I go to a once a day or twice a day dose, it drops back down into the 30’s and hair loss picks back up, fatigue sets in, etc. B’s and D also get low if I try to maintain with diet only. I am super strict and have a gf kitchen, and would NEVER consider cheating. I have experienced accidental glutening twice during this past year which gave me frequent restroom trips for about five days, but other than that, I know I’m doing well with the gf diet. Do you have any suggestions for helping stabilize vitamin (especially iron levels)? I soooo miss my running routine like missing a best, old friend. I need it for the stress relief, but I know it possibly can impact my iron stores and I just don’t have any extra iron to lose!

  14. Alyson

    I appreciate this blog so much. My symptoms and history share a lot of similarities with Dr. Madden’s.

    I was wondering if anyone had ever experienced a connection between celiac and chronic compartment syndrome? I used to love running in high school, but chronic compartment syndrome was the bane of my existence. I had a fasciotomy, which I think is unecessarily destructive for the chronic condition. It was moderately successful, but caused permanent complications.

    I was also constantly sidelined with tendonitis, Achilles, plantar fascia, and IT band problems, knee pain, etc. I had no muscle tone, bruised easily, and healed slowly. I was always struggling for air, even when at rest.

    My celiac history includes Hashimoto’s, anemia, restless leg, osteopenia, and b12 deficiency to the point of neurological damage.

    I just have an inkling that the compartment syndrome may be in some way related to the celiac, nutrient deficiencies, or thyroid problems.

    I am not a doctor, so it is often difficult for me to judge the validity of of some sources. I am so grateful to those who provide sound information!

    1. Jess Post author

      Hi Alyson,
      It’s really nice to “meet” you.
      I encountered someone else who had the exact same issue with chronic compartment syndrome and celiac–it wasn’t you, was it?
      If I can think of who it was I will try to connect you two behind the scenes, and I’ll post any info that I come across.
      Jess

  15. Brenda

    Jess-
    Fellow celiac and hashi patient here. I had a question as to how you knew Paleo didn’t work for you? I have been experimenting in the last 6 months and not sure it is right for me either. What was your Paleo experience?

    1. Jess Post author

      Hi Brenda,

      I stopped it because I lost way too much weight, am not a huge meat eater at baseline, and I really didn’t notice any difference in how I felt when I added GF grains back in.

      Jess

  16. Gilly

    So glad to have found you.
    Similar story, took up running in my early 50’s, loved it. Have done several half marathons and lots of 10k. We live in the Derbyshire Peak District and have lots of hills, so my running was all off road, trail running.
    Diagnosed last August after ending up on neuro ward. Have coeliac with gluten ataxia. This means my balance is not good, get tired easily, peripheral neuropathy and like another of your ladies have painful hands and feet. Still really poorly and unable to work.
    I keep trying to run when out walking the dogs. Feel fine when running but exhausted as soon as I stop and have to lie down. That is on,y running one minute, walking one minute via couch potatoes to 5k NHS app.
    After reading your blog I am going to do a detailed food diary. Not had good feedback from my dietician so looking to fellow coeliacs for advice.
    Thanks for your blog.

    1. Jess Post author

      Hi Gilly,

      Thank you for stopping by. I am sorry that you are going through this too.
      My neuropathy has been under control for about the last year or so, but I’ve had this awful autoimmune fatigue/brain fog that came on a while back (pretty sure I either got glutened and didn’t realize it) and it’s made running really difficult. I just signed up for a half again to help kick me back into shape.

      The food diary should help you figure out if there are any other foods that you’re unable to tolerate. My body “screams” at me if I eat too much dairy-bloating, acne, etc. so I know to avoid it as much as I can. I am still soy and sulfite free too.

      I hope that you start to have an improvement in your ataxia/neuro symptoms. My heart is with you…

      Jess

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