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Cd & Exercise
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52 posts in this topic

Kaiti I think your are probably right...a combination of not getting enough carbs & protein can sap your energy. I thing I have taken in the past is Endurox...although now, I am waiting for the company to contact me regarding gluten-free status of the product. It combines carbs and protein in a 4:1 ratio for rapid rehydration and rejuventation. There is a gluten-free product called Carb=BOOM I just ordered that others who exercise frequently may want to try.

I think priming your body is vital to being able to perform and sometimes supplementation is necessary for those of us on the go and don't have time to eat 10 small meals a day :D

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Interestingly enough, during a "gluten episode", my stomach tends to feel better when I'm running than when I'm just sitting around (perhaps because blood is directed to the leg muscles instead of the stomach??) - Anyone else find this to be the case? Afterwards, however, it can be just as bad as before running (or sometimes worse).

Yes, I find this to be absolutely the case. And I thought the same before, it is, because the blood is NOT in the stomach or guts, but somewhere else. And before my diagnosis, I tried to work out as much as I could, because when I was working out I almost never had any pain. But afterwards then, I always had a lot of pain (or sometimes even worse than before as well). Now I'm all better since going glutenfree. But sometimes (very rare though) I still have a little stinging in my guts where the pain was before. Oh well, i think, I'm just adjusting.

Hugs, Stef

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Does anyone who races or particpates with a group wear Celiac related clothing or work to bring awareness about celiac disease? I wear a Gluten Solutions jersey, but that's it (oh and I talk about it), anyone else have "athlete tested" ways of promoting awareness?

Yes, I'm planing a Sweater and/or T-shirt for our travel team. That will have the team-name on the back and on the front something like: "sponsored by Stef G...glutenfree". I don't know, still working on it. I wanted to put it in a rhyme though. But at the moment i'm really busy with finishing all our team suits first. I will give you guys the Pic-Url, when the suits and/or the celiac awareness clothes are done. It will be quite nice, I'm sure :lol: .

Hugs, Stef

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I had almost no energy before I went gluten-free. Now I can walk for 1 or 2 hours a day and ride a bike also. Before going gluten-free I could barely do any of these things. When i don't get to exercise I have less energy the next day.

Ianm

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I'm finding it a real challenge to do any excercise at all. I get really short of breath, and my balance isn't good at the best of times, but if I'm tired :rolleyes: ...when aren't I tired? ...I'm worse.

My heart races all the time too. I have a faster than normal heartrate. I can't remember exactly what the rate is, but I'm over 60 beats per minute sitting down.

I get a weird feeling just above my heart quite often. It's hard to descibe. Sorta like my heart is weary. Does that make sense?

Sorry for taking over this thread at this point. I'm a bit worried about myself. My doctor isn't giving me a lot of answers. I think he thinks I'm a bit of a hypercondriac (sp??) . :(

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i exercise at least six times a week, (training for a half marathon) i love running and i do totally fine, you just have to make sure you're getting enough carbs and protien, my doctor put me on a protien supplement. and it helps

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I'm finding it a real challenge to do any excercise at all. I get really short of breath, and  my balance isn't good at the best of times, but if I'm tired  :rolleyes: ...when aren't I tired? ...I'm worse.

My heart races all the time too. I have a faster than normal heartrate. I can't remember exactly what the rate is, but I'm over 60 beats per minute sitting down.

I get a weird feeling just above my heart quite often. It's hard to descibe. Sorta like my heart is weary. Does that make sense?

Sorry for taking over this thread at this point. I'm a bit worried about myself. My doctor isn't giving me a lot of answers. I think he thinks I'm a bit of a hypercondriac (sp??) .  :(

Hey Maggie, I know the being short of breath and balance problem real good. I had that in my "end-stadium" so to speak, before I got my diagnosis. Since going glutenfree however it got better and better everyday. But when i'm sitting down, I have something around 60, too. Sometimes more and sometimes (very seldom though) less. And I still do now after being glutenfree. And with ingesting gluten I do have heart problems, too. But a rate around 60 while sitting is fine. And I have that weird heart feeling, too, sometimes. It's really weird, I can't describe it either, but I guess I know what you're talking about.

Hugs, Stef

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Stef, thanks for that. I feel so useless at times. I've only been gluten-free since December 1st 2004, so I guess it's still very early days, and as you said, it improves.

It's good to know people know what it feels like.

Thanks for the encouragement. :)

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Hello Maggie,

if you started in December with your glutenfree diet and your like I was, then around now it should be much better. It took me like three month, too. I started with the glutenfree diet end of July and around September/October I already felt much better and in December I haven't had any heart problems at all any more.

Hugs, Stef

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By the end of the year you should be feeling better than you ever have before. The first three months you won't feel that much better because you body is trying to heal and clean the poisons out. In another three months you should really start feeling different. Patience is required but it will be worth the wait.

Ianm

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Yeah, Ianm is right. You "poisoned" your body all these years, you can't expect that it's better in two weeks.

Hugs, Stef

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Boy, I'm tired out just READING about all this exercise!!! :lol:

If you count running after four kids, including four year old twin boys exercise, then yep, I exercise 24/7!!!!!! :D

Karen

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I'll hold onto those thoughts, Steph and ianm. This past few days especially, I feel really wrung out. So I'll try and look to the future and see that light at the end of the tunnel.

:huh::)

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If you have not been active in a while or tend to get out of breath, you might want to try stretching exercises such as Pilates. We also have a therapy tub (a hot tub if you don't have a doctor's note for it). We had fibromyalgia so badly that initially exercising was very difficult. The hot tub really helped and now we have begun the initial Pilates program. There are several out there that are similar. They can be order off the TV, internet, or at HSN.

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Yes, it can be tough, if you didn't do much for a while. Even if you actually DID do something for a while it can be tough. I'm the best example. And the last couple of days I had my celiac student with fibro also standing in the gym and being real tired because all of that. A couple of weeks since diagnosis she was good now. And thursday she came to the lessons and complained about being extreme fatigue and short of breath and condition. I told here it sounded to me like she ingested gluten accidentaly. And then she said, yeah, she remembered questioning some food the day before. And at the weekend it just got worse. And yesterday she stood in the gym and couldn't do some kicks with her right leg anymore, because she "overdid" a muscle. So she has muscle fatigue, too. Just like me. That's how it can go, even if you work out like a nutball. So take it easy at the beginning. ;)

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Maggie,

I could have written your post ... your symptoms sound so similar to mine. Low energy, rapid heart rate, and that funny feeling (almost like an awareness of it beating in a empty drum?) I have never been able to get energy from exercising, it usually makes me feel sick. I am taking the words of advice from the experienced celiac disease folks "that it will get better".

I was diag. Nov 2004, and sort of watched what I ate until a month ago. So, I am really only a month gluten-free and waiting for the energy .... I am going out today to look into supplements to take to help as well.

The rapid heart rate I have is a result from taking beta-blockers for migraines for 25 years and now my normal/resting heart rate is around 95. I now take the same beta-blockers to keep the rate below 100! If I had know migraines could be a symptom for celiac disease I would have checked it out sooner. :angry:

Blessings to you,

Laura

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Laura

I had high pulse and low blood pressure when standing and my heart felt like it was racing and I would get so tired. They found out I have Graves Disease which is Hyperthyroid. You may want to have your thyroid checked it runs with celiac alot. My doctor told me there are rarely any celiacs with just celiac.

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;):):P How many of you guys and gals jog? I am thinking of trying to start it again
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There is no way in the world that I could jog at this time. OHHH even thnking about it makes me feel ill. (I am going to take Kati's advice and have the doctor check thyroid issues.)

There is a cool web site about running and it has an agenda "From couch potato to 5 K in -------- I forgot how long" I tried it when I wasn't symptomatic and did ok.

I just do not do well with exercise. Also, forgot where it is, but I remember I found it in a search using couch potato and 5K. :(

Good luck, my hubby runs @5 miles a day and he loves it. Get good shoes and a buddy to run with. B)

Blessings

Laura

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I jog for about a mile mostly. When I don't have my daily excerise I get cranky :lol:

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Boy can I relate. In fact I find these posts so comforting to know I was not alone. I hadn't read much when I first looked into celiac disease about being short of breath and was panicked something else was wrong with me!

In the beginnings of my gluten-intolerant symptoms, I was so fatigued and short of breath walking up a short flight of stairs it was insane. My fiance was terribly worried, I couldn't make it through half a shopping trip at Sams Club without feeling completely wiped out. He'd take one look at me, recognize that dazed look on my face and say "We need to go don't we?" Anyhow, I am happy to report being gluten-free has resolved that. Not right away, bt with time it has. In fact I have a lot of energy back and am trying to exercise regularly. Even running. (Its just a matter of getting back in the habit, not because I can't.) I do struggle with the normal getting back into shape woes and building my lung capacity.

So take great comfort knowing you're not alone, and that it does improve. But as a safety precaution I'd have those other lovely medical issues looked into such as you stated your thyroid etc. Better safe than sorry. Because there are other health issues that cause these symptoms. Fortunately I've had everything tested and ruled out int he process of trying to find a cause of digestive issues. Good luck on resolving your issues and hopefully you'll feel like your old self soon!

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Hi there!

I'm a marathon runner & was diagnosed in August, 2004. My main problem before going gluten-free was anemia - got so bad that my skin tone changed (i.e., no "rosy cheeks") not to mention that I often had to walk up hills. After going gluten-free & taking iron pills, I ran my personal best marathon in October (yahoo!).

Although it's more difficult to "refuel" nowadays - at races, for example, the organizers often provide bagels for breakfast & sponsor a pre-race pasta dinner, etc. - if you're careful, there's lots of runner-friendly stuff you can still eat (e.g., some flavors of Balance bars, dried fruit, GU, trail mix,... are some of my favorites). Of course, as a runner, you have to make sure you eat lots of carbs (i.e., "high energy" food). Just do the pre-race pasta dinner with rice noodles...

happy trails!

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I walk at least a couple of miles a day, but most people say, too slowly.

I've just joined a gym attached to my work place and I was 'inducted' on two bikes, a walking machine and a cross-trainer. Looks fun, and simple, and not strenuous. Was out of breath trying it.

Not putting enough muscle on when young and malabsorbing is probably something to do with it.

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p.s. the new avatar is NOT me practising for "tossing the caber", in fact it bears no resemblance to me whatever!!!!!

;)

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This is a response to all you who exercise. I have been diagnosed as a celiac for about three years. In the beginning I continued to exercise (Jazzercise), sometimes three or four times a week. Just lately I have found myself sometimes short of breath, so I have tried to cut back. But, I really like exercising, it makes me feel healthy. I enjoy this group so much. It's just great.

Dick's gal

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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