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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Any Celiac Athletes?
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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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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

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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

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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.

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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

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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:

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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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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

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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 : )

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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

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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.

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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.

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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

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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, No Gluten, No Problem. 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

http://noglutennoproblem.blogspot.com

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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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