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Any Celiac Athletes?


Guest sickrunner

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meganlatebird Newbie

Thanks for the feedback. I eat lots of nuts with the rice so that should slow down the digestion, but if celiac disturbs fat metabolism maybe not. Interesting what you say, Nadia, about hypoglycemia only showing up when you have a reaction. It seems likely that celiac could trigger hypoglycemia if it disturbs fat metabolism. My doctor told me that I burn carbs really fast and that fats just sit there, and that I need to retrain my body to digest and get energy from fat.

How do you fix the buckwheat? I've been doing the rice because it is easy and I am working on my ph.d and teaching and don't have a lot of time.

Do you have good mountain biking trails in your area? There are some good trails here (Reno) but they are really sandy, so I wipe out my elbows a lot.

Meganlatebird


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Melody Newbie

I'm a college athlete and I can identify with almost all of these problems. My energy levels bounce around like crazy! I'm a swimmer and my coach frequently pulls me out of practice because I'm shivering or light headed. I usually swim distance events, and half of the time I feel like I have no energy to finish the practices. Man, I wish I could sprint!! I also play rugby, which is actually easier to handle celiac-wise. The hardest part about both teams is when we travel (sometimes for as long as a week for training). It's so diffucult for me to find food, I usually end up not eating much.

I saw a nutritionist at the Univ. of Pittsburgh Medical Center and she recommended eating 2 hours before and work out and directly after to try and maintain some constant energy level.

Last summer, I rode my bike to the Atlantic Ocean with my dad for fun. It took a couple weeks (from Indiana) and it was hard to eat gluten free since we carried all of our food, but it was worth it!

I'm so glad to find other people who stuck with their sports. Most trainers and doctors I've come across just equate celiac disease with 'no sports' and expect me to quit and go home and bake bread! :P

meganlatebird Newbie
I'm a swimmer and my coach frequently pulls me out of practice because I'm shivering or light headed. 

Most trainers and doctors I've come across just equate celiac disease with 'no sports' and expect me to quit and go home and bake bread!  :P

<{POST_SNAPBACK}>

Hey Melody,

As troublesome as it is when people think you should be in bed instead of working out, it is probably a good thing that your swimming coach recognizes when you've had enough. My first coach could see that I was self-motivated and never pushed me beyond what I felt I could handle, but the next coach I had never listened to me when I told him I felt too exhausted to do the workout he had planned. I ended up over-trained and injured most of that season. The following year, he listened to me and I ran better than I ever had before. I actually ran more mileage but did less speed work. I recover really slowly from speed work and run best when I do only one fast workout a week, which is probably why I am a marathoner and not a sprinter. After I got out of college, I trained on my own and really listened to my body. My times improved dramatically. I think if we have celiac, we have to be even more attuned to our energy levels and recognize when it would be better not to run--or swim--that extra mile.

Meganlatebird

abdab Newbie

Coeliac - No sports - No way !!

I was diagnosed 10 years ago. It took about 2-3 months on a strict gluten free diet before I started to feel OK. Since then I have not stopped. I am weight training 2 to 5 times per week. Walking 45mins every day. Training & competing in track & field during the summer.

I am very strict on the diet. If I get any symptoms I usually know why. But this is a rare occurrance now. The main problem is eating out which I avoid as much as possible.

I do agree you have to listen to your body and sometimes take it easy but there is no reason for stopping sport and exercise.

  • 1 year later...
kmeberl Newbie

Lisa I just googled this stuff because I'm a celiac, I have run a lot in the past but ran a 5k pretty fast yesterday and now my lungs burn like they have never ever before. I think that my iron levels are bad...that makes a bit of sense to me. How do I get better? First how can I get my lungs to stop burning? Just drink lots of water? To improve this do I just eat better, have more iron-rich, gluten-free food? I'm also working out a lot and not losing any weight....could this be the cause?

Can you PLEASE help me? Can you email me at kmeberl@gmail.com? THANKS!!!!!!!!!

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

dally099 Contributor

this is a great thread, ive been sick since xmas and man have my run times suffered for it, i lost 10bls through jan of this year lots of it muscle, but now im on the diet feeling alot better but its like starting from scratch, went for my first outside run as im sick of running on a machine and wanted some fresh air, took me 50min's to run not quite 6km's and only 1 hill in the mix! ugh starting over, i understand the tired feeling especially getting ready to run at night (four kids i dont go till night time) thank god for the ipod to pump me up a bit, everything on the gluten-free diet is low in fat and calories so i get the concern there and it would be nice to eat steak and bacon all the time but my arteries hurt thinking about it. so i got some ideas here and some websites to check out.

have a great day all! :lol:

LoveBeingATwin Enthusiast

WOW! all of you ladies are very inspirational. I would love to start running, get really bored with others exercises for some reason, but wanted to know how you guys got started. Can you give me any suggestions on what I need to do. I am not trying to run marithons but I want to do it to stay..well I should say get into shape. :) Sorry I couldn't be much help but wanted to let you know that you all are awsome!!!


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  • 2 weeks later...
Janiebelle Newbie

I'm proud to be the second ballerina to post on this thread (I found it because I was curious if any other celiac ballerinas were feeling a bit lost with managing this condition).

I was wondering if any of you have come up with a strategy to go to practice when you've been poisoned? I've had one success with Maalox Gas-Ex when I was in so much pain from intestinal gas (yeay!) and it definately helped. I don't want to overdo that stuff, though and would rather find healthier treatment options to get me comfortable enough to be able to dance. It doesn't seem like psylium is moving it out of my system any faster. I've recently been getting low level contamination just because I am really sensitive and had been trying too many new products at once. I feel completely messed up.

Right now I'm missing one of my ballet classes and will have to (and WANT to) make up for it tonight at an adult class, which I hope to God I won't be totally bloated and raspberry-ing my way through. And then we have rehearsal! It makes me depressed to lose my classtime, but I really can't get the right line in my body and support from my core muscles when my abdominals are completely full of gasses. It's lousy. Today I tried lemon juice and that does seem to help settle it down (I think the reaction is making my intestines really acidic, but I don't know; I have too much time to overthink this and don't want to get caught up in a hypochondriatic spiral. But oh well.)

Are there any soothing foods or herbs that have comforted you enough to enjoy your training even though you aren't 100%? I can deal with the other symptoms and energy drop, but the distress in my intestines is just too distracting and makes it so hard to feel the muscles I need to dance with!

PS I LOVE Hammer Nutrition. All gluten-free. Their energy gel packets are FABULOUS. Makes me a boundless ball of energy for class!

-Janiebelle

gluten-free since 2005

Heather22 Rookie

Your story is all too familiar. Unfortunately there is no quick fix; however, I found that going on a liquid diet somewhat helps the symptoms. I found a meal replacement shake that works well. I once met a guy who just went on lemon juice tea/broth for 2-3 days - I didn't try that, but you might want to consider it. It doesn't supply very much energy, but eases the bloat, gas and D for a while.

I also went through a phase of trying this and trying that. Something would work for a while, but then start bothering me, etc (ie. psyllium). After a few years of doing this, I finally stopped experimenting and now just stick to good old food (plus, environmental things like keeping a gluten-free kitchen). I now eat a Paleolithic diet about 80% of the time and feel a world of a difference.

When trying to figure out what works, the keys are consistancy and patience!

Keep working at it! Things will get better!

Best wishes,

Heather : )

melie Apprentice

I second the Hammer Nutrition recommendation! Love their line of products, Sustained Energy, Recoverite, Energy Gel, Perpetuem. All easy on the stomach.

My stomach was totally messed up this week so I went to a bland/soft diet, applesauce, mashed potatoes, broth, bananas, camomile tea. And Kaopectate! Things are slowly returning to normal, but it is so difficult to stay with your exercise commitments when things are burbling and hurting!

Melie

  • 2 years later...
PhillyCeliacTriathlete Newbie
WOW! all of you ladies are very inspirational. I would love to start running, get really bored with others exercises for some reason, but wanted to know how you guys got started. Can you give me any suggestions on what I need to do. I am not trying to run marithons but I want to do it to stay..well I should say get into shape. :) Sorry I couldn't be much help but wanted to let you know that you all are awsome!!!

Hello Twin! I have had celiac disease for 10 years and do triathlons year round. Running is fantastic. It is such a stress-reliever. It is totally possible for you to run a marathon, if you chose to and stayed dedicated. In the meantime, I own and manage a free site dedicated to fitness tips and advice for gluten-free beginner athletes. I'm sure you will find it useful. www.glutenfreetriathlete.com. I made it out of necessity since no one else is doing it.

Healthy N Fit Nutritional makes a gluten-free protein powder that is fat-free. I wrote about it on my website. Let me know when you check the site.

I know how difficult it is to keep weight on and stay in shape at the same time. Trust me! I've been living with Celiac Disease for a decade! Good luck and stay positive. If I can do it, so can you.

John F.

  • 2 weeks later...
gfrunner Newbie

This is nice to hear! I just graduated college and am a competitive distance runner yet I was finding it very hard to recover after workouts. I always feel drained and as if im running on empty, but for some reason i have no problem hitting the times in the workout. It usually feels easy too, but then the next workout may feel like crap and the pace may feel harder than it should. Then there comes the everyday maintenance run where most i feel dizzy or lightheaded like i may pass out probably from blood sugar levels. I qualified for nationals in the 5K and 10K but had to give up going because i just felt extremely exhausted and it was not getting better so we were scared something more serious would happen since i was told my adrenals were not functioning the best. I was told to take some time off of running, which i guess may help a little but i cant stay away forever. I'm used to running about 70 miles a week but sometimes that is hard to do with bouts of diarrhea or loss of energy. My new holistic doctor i just started seeing since i have gotten home also found a thyroid issue and i cant seem to handle carbs and foods high in sugar such as fruit since i turn it into sugar too quick so something is wacky with my insulin and glucose. He wanted me to try no carbs for 2 weeks or not many carbs and this kind of detox supplements since my small intestines have a "beaver dam" in them and producing alcohol. I am taking a week or two off of running but want to start up again since it is also my way to de-stress and i just love my distance running. I was getting weary about how id feel running a lot again but this post has given me some hope and not so scared of getting back into some higher mileage (gradually of course) and maybe skip the speed work for awhile since i tend not to be able to have the same "kick" at the end of a race i used to. Im hoping these new supplements and diet the next two weeks shows some improvement so hopefully i can get more energy and enjoy my running again. I was very happy to see this thread and this post helped, thanks.

Run like an animal Newbie

I just joined today and have found this site to be filled with great information. I am only one month into being gluten free and I am an avid runner. My running has improved incredibly. I knocked off 3 minutes off of a 7 mile run that I do all the time, placed in a race and my resting heart rate went from 58-60 to 48-51! I can't believe the difference and I haven't even realized my full potential. My body must have been really suffering and compensating whenever I ran since I now don't have that mental fight anymore and I feel like I have so much energy. Has anyone had a similar experience? Each day is still so exciting when I run. I'm now learning how to eat, carb load, and manage this disease. I'm 39 and I feel I have had this for at least 8 years. I know my body pretty well and once I hit 30 things were just not the same anymore.

Thanks to all for doing the research when I comes to carb loading and sports drinks/bars. Please share, I would love to hear any athletes who have had similar experiences.

-Run like an animal

  • 2 months later...
peterbronski Newbie

Hey Gang... thought I'd throw my perspective into the mix. I'm a journalist, outdoor adventurer and endurance athlete with Celiac. I've covered a lot of relevant topics on my blog, Open Original Shared Link. I recently wrote a four part series on nutrition for the gluten-free athlete, and I often post about my experiences competing in on-road and Xterra off-road triathlons, ski mountaineering races, and epic outdoor adventures. I've also reviewed endurance energy chews and other foods that are great for athletes. There are lots of folks out there excelling in their sport with Celiac/gluten intolerance - pro cyclists, pro triathletes, mountaineers. If anyone has specific questions, I'm happy to help as much as I can...

Cheers, Pete

Open Original Shared Link

Chuck8268 Rookie
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

Hi Amy

And welcome to OUR life,gluten free.You wil be surprised how good nutrition you wil have going gluten-free! First, there are gluten-free energy bars GU is gluten free.

When I was diagnosed,I said to myself,heck i`m `a distance-cyclist averaging over 100 miles a week,what am I going to do for CARBS! That was at the time when most people were trying to shed carbs,laughing here.I was on the internet desperatly trying to find new sources of carbs!It didnt take long cause there is alot of help here.I knew at first,potatoes and rice were excellent sources. Then I found the cereals in health food stores. Even now you can find Gluten Free Chex in your local grocery store.Even WalMart is finally jumping into gluten free.They have a whole 4 foot section,FINALLY!

Then,I finally found a wonderful pasta,Tinkyada! And I almost lived on pasta pre-diagnosis.

The good thing about gluten-free,it illimenates alot of junk food,processed food,Amy.Thats one big thing I feel that we celiacs actually get BETTER nutrition.

Oh,laughing here, a little red wine,,,,,nice!

Good Luck

Chuck

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    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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