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Non-Celiac Gluten Intolerant Athletes-- Please Share Your Story

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After several bouts of going gluten free, feeling better, and then eventually giving into gluten again and denying the problem to myself.....I am once again back at square one and determined to make THIS time the time that I stick with it. I am a female runner and at age 27 feel that I should be able to recover much more quickly from my workouts than I do. I have tight, sore leg muscles and my legs fatigue all too easily. Whereas I used to run a 42 minute tenK, now I struggle through 8 min/mile pace 5 mile training run. I don't enjoy running anymore, it just feels like too much of a struggle. I feel that I am beating my body into the ground rather than doing something healthy. Sometimes I feel like I am running with bricks rather than legs. After two rest days, they still don't feel well. I have IBS and bloating, and lack of appetite. I don't "overdo it." I am frustrated. I want to be happy, healthy, and thriving, and I want my athleticism to become a functioning part of my life again. I know that gluten has a LOT to do with what's going on.

Just for information's sake, and as part of my burgeoning curiosity about gluten and how it can affect athletes, I am asking those of you who have given up gluten and are NOT celiac to share the whys and hows of what happened to you. How did you feel after giving up gluten as opposed to before? What do you know scientifically about why this occurs to people who don't have celiac disease?

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After several bouts of going gluten free, feeling better, and then eventually giving into gluten again and denying the problem to myself.....I am once again back at square one and determined to make THIS time the time that I stick with it. I am a female runner and at age 27 feel that I should be able to recover much more quickly from my workouts than I do. I have tight, sore leg muscles and my legs fatigue all too easily. Whereas I used to run a 42 minute tenK, now I struggle through 8 min/mile pace 5 mile training run. I don't enjoy running anymore, it just feels like too much of a struggle. I feel that I am beating my body into the ground rather than doing something healthy. Sometimes I feel like I am running with bricks rather than legs. After two rest days, they still don't feel well. I have IBS and bloating, and lack of appetite. I don't "overdo it." I am frustrated. I want to be happy, healthy, and thriving, and I want my athleticism to become a functioning part of my life again. I know that gluten has a LOT to do with what's going on.

Just for information's sake, and as part of my burgeoning curiosity about gluten and how it can affect athletes, I am asking those of you who have given up gluten and are NOT celiac to share the whys and hows of what happened to you. How did you feel after giving up gluten as opposed to before? What do you know scientifically about why this occurs to people who don't have celiac disease?

Before I was diagnosed I had HUGE problems with my muscles.

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By not celiac do you mean not gold standard biopsy diagnosed? Or do you mean you can eat gluten without symptoms and you don't have the gene? I am the former.

Anyway, I was too sick to exercise for years before diagnosis. Now I am back to it training for a mini triathlon. I am in better shape now than I have been in 20 years. The biggest training sessions I do are hour runs, swims and 2 hour bikes. I'm still pretty slow (9 minute runs), but gradually increasing my speed.

I found that exercise revealed problems with my diet. It made symptoms apparent that I hadn't noticed when not exercising. I removed more traces of gluten from my diet and those symptoms went away, even when exercising. I got that terrible fatigue and muscle pain and GERD when exercising as my main problems. As long as I can keep out of trace gluten I can feel like I am getting stronger in my training.

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I am a celiac so I won't comment on my experiences, but honestly you sound over-trained. I know you say you don't "overdo" it, but your body is clearly telling you otherwise. Celiac or no, one thing you have to do as an athlete is listen to your body. Tired muscles aside, the lack of enjoyment, the beat down feelings, lack of appetitie, are classic symptoms of being over-trained. I know that you mentioned that two rest days don't help, but in the grand scheme of things two rest days is nothing. it's not *really* much time off. Do you have any races coming up or anything? Maybe you could switch up your training and try cross training at the gym or swimming for a few weeks (do you have access to any facilities like these?). Maybe the change might help you feel better. I would still ease back on the intensity level even then, but maybe that way instead of taking two days off, you can just take one day off but do other things like walk uphill or do the elliptical machine.

We often hold ourselves to a really high standard when we are training and don't want to do less for fear of losing fitness, etc. However, which is really more detrimental? training when you feel like crap and your body is screaming against you (also increasing risk of injury) or resting/cutting back and maybe loosing some fitness (which can be regained)?

You are going through huge adjustments in your diet, and your body needs the time to adapt to it, celiac or no. Even if you aren't a celiac and gluten may not damage your villi, if gluten makes you feel like crap, you can't say that *nothing* is going on inside your body, right? Your body is likely mounting inflammatory responses and expending energy trying to deal with this thing it "doesn't like" and it needs the rest to be able to get rid of it and for eventhing to find it's happy balance again.

Ultimately, your body is saying "no." You WILL be able to have athleticism be a part of your life again, but only when your body is good and ready. Diet is a very important and often overlooked in athletes and you are leaps and bounds ahead of many other athletes in recognizing this and commiting to make the changes so you can be better. That is awesome. :) Stick to the diet and everything WILL come together - it just takes time. (athletes are rarely patient people, but it's true!) I'll get off my soapbox now - so sorry for going on and on!!

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I am a celiac so I won't comment on my experiences, but honestly you sound over-trained. I know you say you don't "overdo" it, but your body is clearly telling you otherwise. Celiac or no, one thing you have to do as an athlete is listen to your body.

It feels like over-training and physicaly it may be just over-training but it can be gluten-induced.

The last several years before going gluten-free, I was constantly "over-trained". I went through many cycles of resting (for weeks) and then trying to reintroduce lite excercise. Each time I rested longer and started slower and still I was getting worse and worse. I ended up with my muscles aching from just walking or brushing my teeth in the morning. Only a few weeks after going gluten-free, I was able to run again my favorite 8-16km trails, places where I haven't been for years because they were too far for my wrecked body. (I am diagnosed as celiac by negative tests/endoscopy and positive reaction to diet.)

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Thanks for the responses- yes, I do think I am "overtrained" functionally speaking. But I feel that the level at which I train should not be causing, by itself, the overtraining. It seems that there is something else going on here and I do believe it's the gluten. I haven't been on the gluten free diet at all consistently, so...I will try lighter exercise plus gluten free diet and I think i should be feeling better. I was just interested to hear other's experiences, if they were similar or not. anyone else out there care to share?

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I'm no an athlete but I do train pretty hard with a personal trainer twice a week. I've found this year so tough, I did a three month gluten challenge for testing (blood tests negative at 5 weeks and 12 weeks, still waiting on gene results). Throughout the gluten challenge I've been completely exhausted, the two mornings with the trainer are all I do - way too tired to do anything without someone right there - and even in those sessions I know my fitness has been slipping. My fitness test in May was horrendous, I didn't think I was going to get through the 1000 metre row at all much less at a time that reflected what I should be able to do.

Anyway, today is the end of my first week gluten free. It's been a rough week work-wise, I'm stressing about exams and it's rained almost non stop. I also had a few late nights earlier in the week. All things that would usually make me tired. But I trained Thursday and Saturday and I felt amazing. I could breathe much better, I could lift heavier weights, I recovered much faster and I felt myself reaching for extra energy that wouldn't usually be there. If this is how regular healthy people feel, then I can see why being active is fun. If you think you have issues with gluten then please stay gluten free, it's really worth it.

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Yeah, I was having crazy fatigue and soreness. To the point where I ended up not running for a couple of months (but there were also major digestive issues, dizziness, and weight loss nonsense added to the list). I'm improving, but still getting sorer than I should be going back into it. (Did keep up some basic biking to maintain some CV fitness.)

For example, two weeks gluten-free, did a 35 min run/walk, easy pace with a new runner. Painfully sore for four days (atypical-- I felt like I do after running a competative half marathon). Took another couple weeks off working on biking and some gentle hiking. Yesterday, four weeks gluten-free, did a 20 minute, moderate pace run over hills, not at all sore today. Not a perfect comparison, but yes gluten-free has helped.

I do sort of think that if I were to have kept eating gluten for another year or so, I would have ended up being full blown celiac though. Don't know where you fall on the spectrum...

Make sure you get checked for nutrient deficiencies. Low ferritin does the same thing to me.

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It is much harder to exercise with gluten than without. Yesterday I did my usual run after getting glutened accidentally and it took me an extra 5 minutes or so on a 30 minute run, and I felt like I was running harder than usual. Ha, Ha. The same apparent effort yields much lower results. Wasn't too bad though, I just got glutened a tiny bit. I still think that it is worth exercising anyway. All these years of pushing myself to exercise even when sick has made me a tough old bird. Then when not sick you get good results.

What's your time for a 1000 m row?

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