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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Post-celiac And Sports
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23 posts in this topic

Before I got really sick with celiac, I was a very active person with tons of energy. Back in the day I used to be in track and field, hockey, ringette, rugby, soccer, and I used to play a lot of other sports just for fun. Now after being diagnosed, I just play soccer and I'm not the same as I used to be... Last year was a lot tougher for me since I had just been diagnosed. This year I feel tons better than last year, which is great! But I'm still not the same as I used to be. I don't believe I am "out of shape" because I play soccer 2x a week and do other activities such as running, walking, vollyball, badminton, ect. When I'm playing soccer I get tired very quickly and sometimes feel weak. It's very frustrating! Has anyone else noticed a decline in athletic ability after celiac. Does anyone have any suggestions that may help? Maybe you've experienced this and got over it? *Just to add, I eat lots of veggies, fruits, rice, gluten-free grains, and fish. I do eat beef, chicken and turkey too, but I eat way more fish than any other meats.

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I find my muscles ache even during really simple activities - like walking. I don't have nearly the energy I used to, but I keep on plugging because I don't see much of an alternative. Sitting on the couch certainly isn't going to help!

I may be in a different situation than you though - still have a lot of symptoms and haven't put on any weight since I lost it before my diagnosis. My body is definitely not as healthy as it could be.

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absolutely carrie. aside from the fibromyalgia i have, i have also noticed that it seems to take my muscles longer to recover. ie. if i was lifting weights i will be more sore for longer than previously when more healthy. i definitely don't have the endurance i did either. i ran mini marathon successfully in '01, and was hoping to train for a smaller size triathalon or for a full marathon. now the thought is exhausting. i hope one day...

i eat very healthy as well. for those of us who have been sick for along time, i can't help but think it just takes a long long time to recover. and sadly, maybe some of us may not be exactly what we were before ? can't think of any ideas for you if you are eating high energy foods/water before a work and replenishing after...

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I have also noticed that the last four months or so, I am very stiff and sore when I get out of bed in the morning. Don't know why, since I am just as active as I was before. No change in level of activity. Maybe it's my age! :)

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Thanks guys for your help :) I just needed to know if this was normal or if other people were experiencing similar problems. I guess we need longer to feel 100% better. I'm so impatient though, I just get frustrated with myself when I get tired so easily.

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Carrie,

I've noticed a drop-off in my athletic ability. Before I got sick with celiac disease I was playing men's fastpitch baseball. I decided to take this year off as I didn't think I had the energy to play 9-inning games. I don't really get tired but, I've noticed that if I do too much I get light headed a bit and have to sit down.

I do walk a lot and bicycle some as well. I have been playing co-ed softball 1x per week and so far I've faired pretty well. I think I'm still recovering and slowly getting better (Knock-on-wood) so I hope to see my energy level pick-up some and start doing more physical activity.

Cleveland Bob B)

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I've done much better at the active things I do recently than I used to. I don't know if it's all the diet, or what, but I've done better.

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When I got mono (that triggered celiac) that is when I had trouble with endurance and I never had that problem before.

I had problems until I went gluten free...then about 8-10 months being gluten free everything was fine again

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Hi Carrie,

I was wondering if your taking any vitamins? A B-complex vitamin helps with energy. I take one that I get from Trader Joe's that you put under your tingue. I take it every morning.

Also, are you getting enough sleep? Good sleep, the deep REM kind of sleep. I know with me when my muscles are extremely sore and tight I don't sleep deeply.

Hope you feel better soon,

Wendy

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Cleveland Bob - Glad to hear that you are slowly getting better :) My energy levels have improved a lot since last year, but they still aren't 100%. I think I will need more time.

Tiffany - Yea, I was wondering if it was the diet cauing a lack of energy.

Kaiti - Good to hear that your endurance got better. There is hope for us

Wendy - I take calcium and vitamin D. But if a B-complex will help, I'll give it a try! I guess we probably miss out on some of the B vitamins since they are a lot of them in gluten foods. I try to get lots of sleep 7-9 hours most nights B)

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It took me about a year and a half to really feel about 75% and now I'm at about 95%. Anemia is a big problem facing celiacs, especially those recently diagnosed. I also noticed that I was short of breath all the time, bruised easily, and got tired way quick. Not to mention anxiety and everything else (i'm an avid mountain biker, and this was tough for me to overcome). I don't take any supplements, but I do eat a lot of red meat and fish (esp. salmon) and fruits and veggies and natural fats. I'm no longer anemic, and can keep up with the junior kids that I coach :) Good luck with everthing-it's always nice to see fellow celiac athletes!

Nadia

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I notice I start to "suck wind" pretty quick now. I usually have to wait a few minutes or fight through it.

My second wind is actually AMAZING....I can play hoops for like an hour, but after the first 15 minutes I feel so winded, but Like I said, it goes away....

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Thanks for the info Nadia, I guess it not abnormal to still be feeling less than 100% at this point in time on the diet.

I notice I start to "suck wind" pretty quick now. I usually have to wait a few minutes or fight through it. My second wind is actually AMAZING....I can play hoops for like an hour, but after the first 15 minutes I feel so winded, but Like I said, it goes away....

broncobux, I am kinda like that too. The first 10-15 minutes of running or playing soccer is sometimes harder then the rest. But maybe it's because I'm not warmed up yet ;)

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Yeah- It happened to me too. At first, I could barely get off the couch and I actually lost my desire to do anything (I love to ski, surf, walk, bike, do yoga) but it's been a little over 6 months and I would say that I'm about 60% better. I'm walking, biking short distances and I even went surfing for a half hour last week (that's a long time- the water is cold in NH!). I've found that I have to force myself to do stuff, it does take longer to recover, but I'm usually glad I did.

I'm really frustrated too as I used to be always on the go and now I find that I get tired much more quickly. But you figure, it takes awhile to recover and eventually you'll get your ya ya's back. It's good to hear that Kaiti improved so much. And the other thing is I think depending on what we eat, we have good days and bad days. Let's hope we all get our ya ya's back soon! I want to ski this winter and not be exhausted by the time I arrive at thmountain and freeze to death because I had NO cold tolerance this winter (or last summer- it would be 90 degrees out and I'd be freezing). It seems to be getting better though. Best, Beverly

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I've found that I have to force myself to do stuff, it does take longer to recover, but I'm usually glad I did.
I agree, I forced myself to keep in shape and I was glad I did or I think I'd be worse off.
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Hi Carrie,

We've been gluten-free about the same about of time :) I went gluten-free in Feb 2004. I definitely have less energy than pre-symptoms. Of course, I was 19 then and 32 now....think that could be some of it ;) But then my 60+ yr old dance teacher can still dance me under the table, so I think I have a ways to go yet (sigh)....

Merika

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Hopefully we won't have to wait to much longer to get all of our energy back

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I definitely have noticed a change. My symptoms of celiac were usually apparent after I exercised at the gym: I'd feel very dizzy and get terrible headaches right after. I'd pretty much have to lie in bed for four hours or so to feel normally again. <_<

I've only been gluten free for three months or so. I started running again when I started the diet and it did take two months of doing it every day to even start to feel like I used to. My dietitian recommended a multivitamin which helped a lot.

I've only had one headache/dizzy spell after exercising since I've been gluten free and I think it was because of a combination of not taking the multivitamin and possibly ingesting gluten in chips I thought were safe. I also worked really hard at the gym that day. It's really annoying not being able to exercise like a person my age should be able to....not being able to really push yourself etc. I also feel afraid to go to the gym by myself because the dizzyness can get very bad. I'm hoping I will be normal after a few more months... hopefully we all will be!

Good luck with it everyone!

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I'd pretty much have to lie in bed for four hours or so to feel normally again.
I felt the same way last month after my first few games so I know what you mean. All I wanted to do was lay in bed the entire day after the game. I'm not like that anymore though.

I started running again when I started the diet and it did take two months of doing it every day to even start to feel like I used to.
I also notied that it takes longer for me to get in shape than I used to. I started out walking 3-4 times a week and I would be out of breath just walking a little over a kilometer, then after a month or so of that, I worked my way up to jogging and running.

I think you will start to notice improvements with time, I seem to be getting better every month now, which is awesome! So I hope you have the same success. I am still not my usual self though. The next 5 days will be a real test for me, since I have 5 games coming up between Friday and Monday!

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The next 5 days will be a real test for me, since I have 5 games coming up between Friday and Monday!

Wow! Good luck with those games. Sounds pretty intense!

I'm glad you're improving...I think that's so important. As long as we all keep getting better we will soon be back to normal :)

Have an awesome weekend!

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Thank you so much, Carrie, for starting this thread. I have had decreased engery and poop out way before other people who eat horrible and never workout. It has been extremely frustrating as people just assume I am weak or out of shape. I have been looking into finding out what else was wrong with me, but I am so glad to hear that this seems normal with celiac. I am only 4 months in.

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I have had decreased engery and poop out way before other people who eat horrible and never workout. It has been extremely frustrating as people just assume I am weak or out of shape. I have been looking into finding out what else was wrong with me, but I am so glad to hear that this seems normal with celiac. I am only 4 months in.

<{POST_SNAPBACK}>

Hang in there ! I can tell you from experience... after a good while on the gluten-free diet your sports ability will improve dramatically

I am an avid mountain biker. Prior to discovering my gluten intolerance, I was able to hang in there with the group on a ride. Now, a year and a half later, the group is way behind me eating my dust leaving me time to find extra tricks and stunts while I wait for them ! My recovery time is way quicker so I find myself wearing out on set of riding buddies only to go out with some others the next day.

I would say do what you can for now exercise - wise and go solo if group pressures are dragging you down. Focus most of your energies on assuring that you ingest only whole foods prepared by yourself and that will be the best thing you can do to increase your sports performance. Good luck !

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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