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Any Celiac Athletes?


Guest sickrunner

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Guest sickrunner

I have been recently diagnosed with Celiac and am just getting used to adjusting my diet and was wondering about nutrition for athletes with Celiac. I run quite a bit (just did my first marathon) and have just started getting involved in triathlons and would like to know if anyone has any advice especially regarding nutrition during races.

Thanks!

Amy

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nthei Apprentice

First, YOU ROCK! Congrats too! I'm not quit to Marathons yet, but working on it. I have been asking the same questions. For Carb loads: Someone posted that Gu is gluten-free, I can't remember the manufacture name. Since I'm not as advanced as you I found that the Envirokidz gluten-free Rice Bars are o.k. for me before and after my runs. I'm checking into G & C's Distance supplement powder to see if it is gluten free. Otherwise, I don't have much else. I know the pure honey straws are gluten-free, for another carb load suggestion. As for basic overrall athletic nutrition, I would like that info as well.

My I also ask how your energy is doing? Sounds like it's doing great since you can do a marathon. I'm struggling. Some days my energy sky rockets, others . . . . . terrible. I don't know if it's diet or just being celiac disease. I hear both. If you have any suggestions for me, I would love to have your input. I'm logging 18 to 20 miles a week, but just can't seem to break that. I would like to log at least 25. I added some hill running to try to build some endurance muscle, haven't noticed too much of a difference, except for the next day's run, then I'm back to where I was.

Have a great day!

Great health to you. Also check our Runner's World message boards, www.runnersworld.com.

Christina-ROCK 'N RUN!!

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flagbabyds Collaborator

Organic Food Bars are gluten-free and they say it on the package. They are300 calories and taste great.

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Racheleona Apprentice

Hi guys, I was wondering the same thing...(I'm not sure if I'm celiac, being that I haven't discussed my labs with my dr. yet, but he told me before the lab to do the gluten-free diet anyways) but, I am a ballet dancer, and am finding myself constantly hungry, snacking on veggies, fruits, and even just nuts.

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Guest Sibewill

I'm certainly no runner, but I do take really long hike/climbs with a pack and have found 2 products that I like so far. The first was already mentioned, the Enviro Kids bars b/c they are so tasty and weigh next to nothing. For a more serious energy boost I have begun using ANDI bars which are Gluten,casein, corn and soy free. They have 13-15 grams protein and total ~228 calories. The site for these is www.AutismNDI.com (609)-737-8985. Good luck.

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lisabarella Apprentice

Hey all,

I have called a couple companies regarding their products. Hammer Gel is gluten-free; Gu is gluten-free; Gu H20 sports drink it gluten-free; Ultima is gluten-free (electrolye replacement). During running I use GU and Ultima. On the bike, I eat rice bread with penut butter or soy butter (cut up and stuff in my bento box). I am also a big fan of tomato juice during long long long runs (3+ hours) - sounds nasty - but it works - good source of salt too. When you are checking products out, just make sure that the maltodextrin is dervied from either corn or rice. I also eat a ton of apple sauce - the kind that is organic without added sugar. Before racing, I eat gluten-free waffles from Trader Joes with penut butter or a P&J sandwich, a pear, and some gluten-free soymilk.

Papadini has a Hi-Protein Pure Lentil Bean Pasta which is gluten-free; 2 oz has 190 calories, 1.0 g of fat, 33 carbs with 5 g of fiber and 13g of protein. Ingredients are lential flour, salt and baking soda. Good recovery meal.

Lisa

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Guest sickrunner

Lisa,

Wow! Thats great! Thanks for all of the info. What kind of sports do you do? Do you find any problems with energy levels? I have really been struggeling lately. I have my mind set to get more involved in triathlons, but I am worried that I won't be able to because of my Celiacs. Any tips?

Thanks!

Amy

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flagbabyds Collaborator

I play soccer and every 1/4 i eat part of an energy bar. By the end of the game I have eaten about 2 or so. I am also training this summer so I can make the school team in the Winter but I eat gluten-free toast and berries before I run and then when i get homeI usaually eat 2 energy bars and my regular meal. I know it sounds like a lot of food but I know if I don't train I won't make the team so I just eat constantly these days.

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lisabarella Apprentice

Amy,

My energy levels bounce all around, believe me. If you are on a gluten free diet, have normal iron levels, and are absorbing minerals and vitamins from your food, you should be OK. I find myself always hungry since when I eat my body (brain) just doesn't absorb all of the nutrients from the food. When I was anemic, I was sleeping and tired all of the time. Not being anemic has helped with my altering my fatigue, and by making me feel more alive and alert. So first, I would check you iron levels. If your hemoglobin is low, then your body doesn't have the proper levels to transfer O2 to your working muscles. So, you will fatigue quicker, even with just aerobic activity. When I go anemic, I can tell right away; my legs burn, my lungs burn, and I feel wipped out. Have you gotten another biopsy since your dignosis. If not, I would suggest it. They will be able to tell if the gluten free diet is working. Or you could do two tests (fecal fat and xylose). The first measures the amount of fat in your stools. Too much, means malabsoption. The later tests, measures simple carbohydrate absorption. This is key. If you drink 12 oz of a sports drink with 20 grams of carbs, but only 10 are being absorbed, then you could be in trouble! Are you tired during exercise? After? How long have you been working out? Do you have a good aerobic base built up? Remember that each sport (swim, bike, run) requires differnet muscle groups and capillaries. So as you train, more and more, you will build the up the capillaries surrounding the working muscles, which will also help improve 02 transportation. Ok? Keep the questions coming - I love this stuff! Also, Lava Gel is Gluten Free and Airborne is Gluten Free. There are also some coated bars on the market that are gluten free - Geni Soy has two bars - the choc penut butter and the yogurt penut butter. Mostly a bar with sugar and some protein. Better recovery bar then pre training bar. Think Thin has a bunch of bars with 20 g of carbs, 20 protein, and 7 g of fat, but the carbs are mostly from sugar alchols (so they don't effect your blood sugar). Plus, sugar alchols are not easily digested by most people, so if you eat too many, your stomach will hurt! Geni Soy also has soy chips with are gluten free. Their website has a lot of info on their gluten free products. I contacted Power Bar but have not heard back yet.

Lisa

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Guest sickrunner

Lisa,

Thanks for all of the info. You should go into this professionally...are you a trainer? In response to your questions I am tired just about all of the time lately. I try and work out as much as I can and when I do, I really get wiped out and don't feel as though I am getting as much out of my workout as I used to. I think that I have a pretty good aerobic base, I used to log 30 to 35 miles/week running though now I am barely making it through a 3 mile run. I have not gotten a second biopsy because I will be moving soon to PA and don't currently have a doctor there.

Have you had any experiences with triathlons? Even though I am in the middle of batteling this right now, I would still like to start training. I am very comfortable running, but need work on the swimming and biking. I was thinking about taking a spinning class, but am a little bit nervous because I am not sure if I will be able to keep up. Any advice?

Thanks again,

Amy

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lisabarella Apprentice

Amy,

If you are really that tired after a 3 mile run, I would head to your Celiac doctor!!! I can't give advice on biking - I am slow, slow, slow. And, lastly, why the hel* are you moving to PA? JK. (I can check with my mom who lives in PA - I think there is a good celiac doc in center city Philly at Jefferson).

Oh yea, when your tired from your run, what kind of of tired is it? Local muscle fatigue (hams, quads)? Whole body fatigue? Neural fatigue? Do you feel like your lungs give out way before your legs, or the opposite? Where do you live?

Professional? Nope. I just like helping others, so they don

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Guest sickrunner

Lisa,

I am actually really excited about moving to PA! I am starting at Wharton at UPenn in their MBA program next month and can't wait! Doesn't hurt that I have a great guy that lives there already ;) Currently I live in OH but have lived in NYC, Cali and DC so I don't mind moving around! I have already contacted a dr. in Philly and scheduled an appt for the week that I arrive so I am excited about getting this all under control. I also got in touch with a local triathlon training group where I think that I can get some good advice and training from experienced triathletes.

When I run I tend to have local muscle fatigue. I am getting used to being gluten-free and hoping to see some results soon. I am focusing on cross training, yoga and weight lifting right now and cutting back on my running until I get my energy under control.

Thanks again for all of your advice.

Amy

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lisabarella Apprentice

Amy,

Awesome! That sounds fabulous:) What doctor are you going to see in Philadelphia? What triathalon group? I think there is also a good celiac support group there too! You should have a blast:)

LB

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Guest idahok

I was diagnosed with Celiacs 2 weeks ago. I was training for a bike tour and couldnt' cope with two or more hour rides. I thought it was my nutrition (I guess it was). Now I find out my hemoglobin was only 6.4! I am relieved to be diagnosed and already feeling better on the gluten free diet. I am glad to hear I can still be athletic. I think it will take me a little longer to get over this anemia. Has anyone found out about Accelerade, if it is gluten-free? I look forward to hearing more through this forum.

Kathy

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Guest ~wAvE WeT sAnD~

Hey all! I've been a cross country runner for nine years and healthy for most of them until now. I'm not fully diagnosed yet, but I know how it feels to tire out! I have noticed in the past year and a half that I'm not as fast as I used to be--we've actually had some 5ks (female runners run 6k races now--the rule was changed in my athletic conference this past season), and my best is 25 min. or so. I've run 21:21 before!!! My "slowing down" process began after I had severe anemia after blood donation and Mono for 8 months during my freshman year of college. Nothing, however, has been as profound as the fatigue I've been feeling since this March. I have only been able to run for 30 min. so far--when I get the motivation to get off my lately tired @$$ and exercise.

Just wanted to let all the runners know I've been feeling what they're feeling!!!! Hopefully after this Scope business I can get back in the game--our cross country coach has just gotten fired and school starts in Aug.!!! The training packet has not yet arrived!!!

Keep running!

~Jill

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Guest sickrunner

Glad to hear that I am not alone! Sometimes I get so frustrated not being able to work out to full capacity. I am hanging in there though and have already noticed a difference by being gluten-free.

Lisa,

I am going to see Dr. Katsenberg in Philly which was someone's recommendation on the forum. I am hoping that I like him. In regards to the triathlon club, I spoke to the woman who formed T3. They are a small group in Philly but them seem very cool and dedicated so I am looking forward to meeting them in person.

See....PA doesn't seem all that bad now does it? ;)

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lisabarella Apprentice

Amy,

Cool. Good. I am glad you found a doctor there. There is also a Whole Foods and TJ's in Jenkintown, I think. Oh, PA was just a joke. I grew up there and went to school there. I love the place, but the smoke drives me nuts:) Other than that, I have very found memories. Plus, my entire family lives there. You are going to have a blast at Penn. Make sure you check out Martini's on 18th and Samson?, Swanky Bubbles on Front and Market, and another Martini bar on 3rd and Market. That is, when you are not working your but off!!! Can you tell I like Martini's? Thank goodness for Chopin Vodka!:)

Cheers,

Lisa

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Guest sickrunner

Thanks Lisa for the resturaunt suggestions....although neither my boyfriend or I drink, so no martinis for us! However, any gluten-free resturant suggstions?? My boyfriend lives by Rittenhouse Square so we tend to like to go out a lot in the City. Looking forward to starting the program at Penn too....don't know about having a blast though, I understand that it is very competative and intense....maybe I will take up drinking :o

Ciao!

Amy

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lisabarella Apprentice

Amy,

You are a riot! All three of those bars are more like bar / resturants. Swanky Bubbles is a tapas place. The other two have good food too...but I ate there way before I found out about Celiacs. So, I can't comment on if they have gluten free meals. PF Changs has a gluten free menu, but I don't think they have hit the east coast yet. I really don't drink either - maybe 5-10 drinks a year - but they are usually vodka/holiday related drinks:) It causes havic to my training and makes me feel sluggish. I am going to keep contacting the sport supplement companies and when I get more responses to products, I will let you know. I am trying to compile a handy list of those companies, so athletes with this disease and others with wheat allergies can use products in training that won't cause intestinal discomfort. I have not talked to a ton of athletes with Celiacs, but I am always meeting people with wheat allergies, chron's, and other intestinal disorders. If you have more questions and want to talk, email me at lisabarella@hotmail.com and I will send you my number. Have fun with the move and most of all enjoy life:)

BTW: I was thinking that maybe the move and school thing is causing mental stress which in turn is affecting your body and running. I know that when I am under mental stress, my workouts suffer. You have TWO of the THREE major life stressors - MOVING, NEW JOB/SCHOOL, DEATH of a LOVED ONE. Just a thought:) - so don't be too hard on yourself.

Cheers,

LB

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Guest sickrunner

Lisa,

Thanks for the advice. I am hoping that once I get settled, everything will ease back to normal as far as my workout is concerned. Though I am very laid back by nature, sometimes I do keep everything inside and that may indeed be affecting my energy levels. It sounds like we have a lot in common so I would definitely like to chat more. I am planning to move within the next couple of days, so once I am settled, I will touch base with you.

Thanks again! :D

Amy

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  • 11 months later...
Tanz Newbie

Hi guys

I have just found this forum and it is great. I don't feel so alone. When I first found out that I had celiac (March 2003) I couldn't even walk up stairs. I loved to run but that was impossible and had been for about 6 months. However after 2 and a half years of gluten-free I have just ran my 3rd Marathon and did it in style under 3hours (just) : :) To all gluten-free athletes It does get better, what I found was that there our days when you have no energy at all and wander why, but regular running (60 minutes 5-6 times a week and a long run 2-3hrs) seems to work. I started out initally running 4 times a week for between 30 and 60mins. I still have the occasional day and even week when I find I can't run for even 10 minutes but then I have more weeks when things are great. ;) One thing I have learn't is listen to your body. We as celiacs do not recover as quickly as other people and if we don';t listen to our bodies we get tired and then injuried. Also I still find speed work very difficult as I tire really quickly and it takes me a few days to recover so generally I do very little of this.

I prefer being a turtle to a hare.

Race Nutrition

I use Glu (I am in New Zealand) this seems to be great and is gluten-free (my coach reckons it is miracle formula).

Bananas and rice bread is also good. If I am racing later in the day and am travelling to a race, I will take a container of rice cereal and add some tinned fruit to it. It is a great energy source. I am now know as the cereal girl.

Good luck to every one. Choose a long term goal and then set shorter term goals that work towards the long term goal.

And remeber no matter how high the mountain some day some how you will get there. Believe in yourself nothing is impossible!

Keep running!

Tanz

:D

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  • 3 weeks later...
kimberleyshort Newbie

It's great to hear that so many more people diagnosed with Celiac are competing in marathons and triathlons. I've been gluten free for almost 4 years now and am an avid marathon runner and triathlete. If your energy is low you may want to make sure that you are getting enough calories, especially carbohydrates. With the "lo-carb" craze many athletes are not getting the proper nutrition into their systems and end up with very low energy. Your body needs carbs in order to train and race. If you are training 2 hours per day your body needs at least 8g of carbohydrate per kilogram of body weight. Example:

A 57 kg athlete needs 340grams-399 grams of carb (per day) if you are spending 1 hour per day training. The same athlete would need 456 grams of carbohydrate if they were training 2 hours per day.

Don't forget protein too, a competitive athlete needs 1.2-1.8 grams per kilogram per day or the same 57 kg athlete needs a minimum of 68.4 grams of protein daily.

I take gluten-free multivitamin and use a product called "Platinum Performance". It's available online.

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meganlatebird Newbie

I am really interested in what many of you are saying regarding celiac, carbs, and energy. I am a marathon runner. I used to eat a high carb diet--also high in wheat--since I had not yet been diagnosed as celiac--and ran a 2:35 marathon on it. I was also running around 110 miles a week and always had tons of energy. Then suddenly carbs started making me sick. I was tired all the time. My doctor diagnosed me as hypoglycemic and recommended a high fat and high protein diet. At first I was exhausted on the diet, then I started feeling better, had lots of endurance for long hikes and bike rides but still felt sluggish running. During this time I was eating almost no gluten but still had not been diagnosed as celiac so wasn't being real careful. I started feeling too sluggish on that diet, however, after about a year, and so I started eating more carbs, including wheat. The wheat made me really nauseas, but strangely I had more energy. I would take my dog for a run then come back and go mountain biking because I was too nauseas to eat breakfast and there didn't seem any sense in waiting until the afternoon, when it was hot, to bike, which is what I usually do. I felt nauseas during my run and the ride but for the first time in over a year I felt energetic. After a couple of weeks though, the nausea got so bad I had to quit eating wheat. I had the celiac panel done and cut out all gluten. It took several weeks for the nausea to settle down, and along with it went the energy. Now, even when I eat lots of carbs--mainly in the form of rice and fruit--I still feel exhausted. Less nausea than while eating wheat but also way less energy. My iron level is supposedly normal.

So, here is my question. Was the extra energy I felt while eating wheat simply due to the increased carbs or could the gluten cause a stress reaction and concurrent release of dopamine or some other neurotransmitter that temporarily elevates energy levels?

I am also wondering how long after going gluten-free it has taken any of you to get your energy back.

Thanks,

meganlatebird

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tarnalberry Community Regular
Now, even when I eat lots of carbs--mainly in the form of rice and fruit--I still feel exhausted.

<{POST_SNAPBACK}>

You mention hypoglycemia - rice and fruit can be problematic with hypoglycemia since they release into the blood stream so easily. You may be fighting blood sugar issues (which can definitely make you tired). Try looking into lower glycemic load foods (don't have to have fewer carbs, just more slowly digested ones, and balanced better with fat/protein at EACH meal).

Also, have you had your iron, B-vit levels checked?

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Nadtorious Rookie

I used to run around 30-40 miles per week in college, about 2 years before being diagnosed with celiac disease. I can remember getting a "buzz" after eating gluten foods, kind of energetic, but more fuzzy and restless. Sugary foods that were low in gluten gave me tons of energy. Even now when I eat something wrong, I get a "buzz". I was diagnosed with hypoglycemia last year as well, but my low blood sugar type symptoms only show up right after a reaction and only last a couple days.

I'm a mountain biker too, and I don't eat rice, but buckwheat is a definite staple. Low on the glycemic index too, I believe. My energy levels stay pretty stable, as long as I don't skip meals (I'm bad about that :unsure: )

Good luck with it.

Nadia

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      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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