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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.

Questions About Starting Workouts Again
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Hi all,

I was just diagnosed last week (high tTG and positive endoscopy) and I'm very much trying to figure out the "recovery" aspect of Celiac. I feel like I'm getting a handle on the diet (I've been gluten-free for 5 weeks now, doing a whole foods approach), but am a bit lost at the gym. My primary symptoms were, strangely, a chronic fever and cough (stretching back over 10 years), along with muscle stiffness and joint pain. Up until the last 18 months or so, I was able to lift weights and continue cardio (running, walking, and elliptical) fairly well, allowing for periods off when the fever was really strong. But the last year has been very rough, the fever and the fatigue just knocked me off my feet and I pretty much had to stop going to the gym about 6 months ago.

I no longer have the fever or cough, but the fatigue is ongoing and the muscle stiffness is intermittant (as are the GI symptoms). However, I really want to get back to the gym as I've lost 15 pounds (normally I'd be delighted, but I'm sure some of that was muscle). My doctor has encouraged me to "do as much as I feel comfortable with", but "not too much too soon or I'll hold up my recovery." So, I'm trying to figure out what that means. I thought your experience would be helpful. My questions:

1. When you were starting back to the gym, did you take more rest days and do longer/more intense (relatively speaking) workouts on the days you worked out? or do shorter, less intense workouts everyday?

2. Was it better for you to do cardio and weights on the same day or to alternate them to give your body a break? How many days did you start with?

3. What signs did you watch for that let you know that you were overdoing it?

4. Any thing else that you had to alter in your routine?

5. How long did it take you to feel like you were making fitness gains?

Thank you in advance for your help!

Greenling

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I'll be watching this thread with interest. I get severe joint pain along with neuropathy and muscle fatigue, I was thinking of starting working out again but I've had it all flare up again over the last week or so and don't want to push myself into ever decreasing cycles of fatigue and work.

One thing I will say though ( and I'm sure as a long term gym goer you already know this ) rest is vital even when you're fit. I'd imagine with a digestive system that isn't functioning properly, it has to be even more important now as you struggle to absorb the nutrients you need. It's very possible to make great gains without working yourself overly hard, so I would advocate working smart rather than hard.

My partner, who has dairy problems, has recently started accepting that she's not getting any younger and needs to be smart if she wants to keep running. She reduced her daily runs and really focusses each run on something specific she wants to achieve. The gains she has made have been astonishing. From being injury prone and fatigued, she's gone to being extremely energetic, lean and fast. In fact you can see on the weekends when she takes a rest instead of doing her normal long run, she drops in fat percentage and puts on muscle as her body takes the chance to rebuild itself.

Anyway in short, I would imagine that you will ( and I will too ) have to be patient and smart from now on, when it comes to fitness.

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Thanks, NoodleUnit, for your reply. I understand exactly what you mean about things flaring up again. I just had that happen in the last ten days, so I worry I'm overdoing it (but I don't seem to be doing that much). I know that rest is important (and I sleep long and well at night), but I'd be very interested in hearing more details about what your partner did with rest to improve her running. When you say she reduced her daily runs, did she shorten them or do fewer per week or both? What kinds of things does she focus on for each run (I'm assuming speed or distance) when she does workout? I'm guessing we're close to the same age (I'm 41, so I'm not getting any younger either).

It sounds like you have a really good mindset about patience and exercise--I'm working on that. ;) I'll remind myself to "exercise smartly", that's good advice.

Greenling

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Hi Greenling

She reduced the number of runs she does per week from 5 to 3 and introduced the odd rest weekend where she does nothing ( about once a month ). In place of one of the missing runs she does a weights workout, but I think that's more to make her feel less lazy than actually to have any real effect ;). She does two shortish runs through the week ( 5 miles or so ) and then goes out for two hours or so on a Sunday - currently that 2 hour run is allowing her to cover 14.5 miles. Before she cut down on the runs, her pace was stuck at about 10 minutes per mile over a 2 hour run, she was constantly fatigued and frequently injured. It took a lot of persuading to get her to try cutting down on the number of runs but within two weeks of cutting down she was down in the 9 minute mile range and it;s kept on dropping. At the moment she's just focussing on distance really, although I guess her short runs are more focussed on speed.

I'd add that we have a fat percentage monitor on our scales and you can see on rest weekends that she drops fat but gains weight, meaning that she gains muscle. This happens every single time. she also gets a demonstrable speed boost the following week.

I have to say I'm both proud and envious of her. I was pretty accomplished as a runner and a field hockey player ( tried out for my nation when I was much younger ) in my day, but have struggled with fatigue and injury for years now. I have a fair idea that a lot of that was due to the celiac disease bubbling under and am fairly hopeful that as I recover I can regain a lot of my lost fitness. The irony is that I had been on the road back to fitness last year when I began to get really ill and all of this kicked off. My "work smart not hard" mindset is basically a result of many years of banging my head off a brick wall ;).

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Hi NoodleUnit,

Thank you for the additional info--it helped me piece things together. In the past, I've had symptoms of "overtraining" (and that I now think were due to the Celiac). But this helps me put in perspective my need for "rest" days and gives me ideas on how to schedule my workouts. It sounds like your partner's running really improved (I'm jealous!) and, without hearing about her success, I would have been resistant to cutting back, but now I'm going to figure out a schedule and try it. I'm nowhere near running right now (and I miss it), but I'm thinking about trying 2 run/walk days that are shorter and a longer walk-only day for a couple of weeks. I'm hoping this will allow me to ease back into running, but not make me feel wiped out after a workout (what currently happens).

I'm still going to have to figure out what to do with weights, but baby steps....

As an aside, I talked to a dietician today (my Hy-Vee grocery store has one on-staff) about my crashes after working out mid-morning. She suggested eating 30 grams of protein for breakfast (much more than I have been doing!), due to the malabsorption issues that Celiacs have. So I thought I'd share that information with you. And then she told me not to push too hard. ;) So, maybe if I hear that message enough times, it will sink in. In the meantime, I took a rest day today and feel pretty darn good. I think six weeks of Gluten-free are finally starting to make a consistent difference (I've had 3 "good" days in a row).

Hope you're feeling better also! Thank you again for your post.

Greenling

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Glad I can be of some help :). It's something I'm getting my head round round just now too, I think I'll probably do some upper body stuff next week ( my op last month means I can't really do cardio or lower body stuff yet ).

I have two problems at the moment - one is my grip as the neuropathy makes my right hand quite weak, which in turn makes holding weights quite hard, it's fading slowly though, so hopefully I can get back to it soon; the other is fear I guess. Psychologically I'm very apprehensive of putting my body through any more shock. So softly, softly for me. In fact I'm considering trying a fairly energetic form of Tai Chi to see how that works. It's supposed to be quite good for neuro problems, helps with muscle control, relaxation and energy, which is what I need now.

As for running, I can't recommend the couch to 5k schedule highly enough. Before I got ill, I did it and it got me from nothing to running non-stop for 30 mins in about 9 weeks. http://www.coolrunning.com/engine/2/2_3/181.shtml It's very well designed, only involves 3 runs a week and I would say that even if the early days feel easy, as they did for me, stick to the schedule, you'll be surprised how achy you are afterwards :)

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I have two problems at the moment - one is my grip as the neuropathy makes my right hand quite weak, which in turn makes holding weights quite hard, it's fading slowly though, so hopefully I can get back to it soon; the other is fear I guess. Psychologically I'm very apprehensive of putting my body through any more shock. So softly, softly for me. In fact I'm considering trying a fairly energetic form of Tai Chi to see how that works. It's supposed to be quite good for neuro problems, helps with muscle control, relaxation and energy, which is what I need now.

I am sorry to hear about the neuropathy as that has to be very frustrating. I was starting to have the very beginnings of that right before I went Gluten-free (I had no idea why my toes and fingers were randomly tingling). I hope that it continues to fade and your hands get back to normal. I think Tai Chi will be good exercise in many ways; I have a friend who takes a class and loves it for the peaceful concentration it gives her. I've promised myself to start stretching this weekend as a prelude to getting back to yoga for much the same reasons.

As for running, I can't recommend the couch to 5k schedule highly enough. Before I got ill, I did it and it got me from nothing to running non-stop for 30 mins in about 9 weeks. http://www.coolrunning.com/engine/2/2_3/181.shtml It's very well designed, only involves 3 runs a week and I would say that even if the early days feel easy, as they did for me, stick to the schedule, you'll be surprised how achy you are afterwards :)

I'd heard of this program before, but hadn't really looked at it closely. I looked it over this morning and it seems very much like something I could manage at this point without being too much. So, bright and early Monday morning, I'm doing Day 1. I'll let you know how it goes.

Have a good, restful weekend!

Greenling

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the other is fear I guess. Psychologically I'm very apprehensive of putting my body through any more shock. So softly, softly for me.

I just realized that I didn't comment on this and it really spoke to me. One of the lessons I learned most strongly over the last ten years (while I had my chronic fever and other symptoms) was "how to be sick." On the bright side, I learned to self-care (good nutrition, lots of sleep, regular exercise as consistently as possible) in order to function while friends my age were ignoring their health. However, I also learned to be a bit of a hermit, and to live within the restrictions that I set for myself too easily. I no longer trust my body to respond well to change, challenges, or stress. So "softly, softly" is quite a good motto now for learning how to live "well". :)

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I have the same problem Greenling. I have had issues for the past 3 years with adrenal stuff. One thing i have learned is that you will overdo it sometimes. I have two things that i have learned.

1. Listen to your body and don't try to force it

2. When in doubt, always do a little less rather than a little more.

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Thanks for the advice. I'm trying to listen to my body and not push so hard (I need to make #2 my mantra or stamp it on my forehead). This weekend has been much more successful in that respect. It's also helped to track the nutrients in my food and up my protein intake. Baby steps.... I'll figure this out slowly, but surely. Good luck to you--three years is a long time for recovery, but I hope it continues.

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Ah no, i have only been off of gluten for 5 months. I was sick for 3 years before i found out about it. =)

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Ah no, i have only been off of gluten for 5 months. I was sick for 3 years before i found out about it. =)

Okay, that makes sense. :) Have your symptoms cleared up in those five months?

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A few quick things my fellow gym-goers:

- Always stretch before lifting weights or exercising (whole body)

- Always stretch after lifting weights or exercising (whole body)

- Worry more about form and less about weight. Even if you have to use the bar by itself

- Take glucosamine for those joints

- Drink 80+ ounces of water a day

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Very good advice, that. ^

I'm taking glucosamine for my joints anyway as I punished my body pretty hard when I was younger. Actually... there's a thing. I was told to stop running and playing hockey for a year when I was 16 because if I carried on I'd never run again. The cartilage in my knees was disintegrating and getting stuck between my knee joints. I wonder if the celiac disease had anything to do with that, all of 24 years ago...

@Greenling have you tried the c25K yet? I'm almost at the point of being allowed to exercise again, 5 weeks after my op. Keen to get started tbh.

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@Greenling have you tried the c25K yet? I'm almost at the point of being allowed to exercise again, 5 weeks after my op. Keen to get started tbh.

Hi NoodleUnit,

I'm going to start the c25K on Monday. I decided to listen to my body and go softly (thank you for that advice!) and wait another week (while I cut out high-lactose products and upped my protein intake). My energy level has improved (yea!) and my GI problems have resolved (logging my food has been very helpful here). So I actually feel like exercising now. Nothing too harsh, but I think the c25K will be gentle enough for the first couple of weeks that I can feel my way. :)

I'm glad that you're going to get to start exercising soon. Are you still going to start with the Tai Chi? Keep me posted and I'll let you know how the c25K goes.

Greenling

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Hi NoodleUnit,

Just thought I'd let you know that the first day of the C25K program went really well today. I even did a few weights and a lot of stretching afterwards. I stopped before I got too tired and feel great now (about 3 hours later). It was soooooo good to work out and ENJOY it.

So, thank you very much for giving me the link to the C25K!! :D Hope you're feeling better.

Greenling

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That's brilliant news Greenling :D I remember being surprised at how much of a burn I got after even just that first run/walk day.

I've just started back at work after 6 weeks convalescence. We went for our usual lunchtime 30 minute walk and it nearly did me in ( I'm still having the neuropathy, which makes my right leg fatigue quickly, it's slowly going away though ). Seems I have a loooong way to go, lol.

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Congratulations on being able to go back to work! And I hope that you enjoyed the walk and didn't suffer any ill effects the next day. Little by little....

I'm taking more rest days, so today I was "off" from exercise, but tomorrow I hope to be back at the gym.

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How're you getting on Greenling? I did my first Tai Chi class on Sunday morning. Not sure about it if I'm honest but I'll give it a few more classes before I make a decision about it. To be fair, I did feel pretty stiff afterwards despite it being mostly very slow moving :)

I do like the idea, I'm hoping that the reality becomes a bit more satisfying soonish. I'm guessing knowing only one step so far is a large part of that feeling though. :)

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How're you getting on Greenling? I did my first Tai Chi class on Sunday morning. Not sure about it if I'm honest but I'll give it a few more classes before I make a decision about it. To be fair, I did feel pretty stiff afterwards despite it being mostly very slow moving :)

I do like the idea, I'm hoping that the reality becomes a bit more satisfying soonish. I'm guessing knowing only one step so far is a large part of that feeling though. :)

I hope the Tai Chi class becomes more what you're hoping for, NoodleUnit. I've always been intrigued by the idea of it, but haven't gotten to try it. I think the mental concentration aspect of it would be good for quieting stress. Hope your muscles loosen up soon (but, hey, they must have gotten some kind of workout).

I'm in Week 2 of the c25k. I did too much on Monday, so I ended up taking three rest days. The run/walk was going so well for me that Monday I decided to finish out the 5K distance--big mistake. Lesson learned! ;) So I'm going back to the prescribed 20 minutes. I may have to stretch Week 2 out a bit--I'll see how tomorrow goes. But I'm making progress.... Slowly, slowly, right?

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Exactly - just remember it's designed around the idea that you just repeat days/weeks if need be. I remember doing much the same as you early on. :)

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That's me got the go ahead to start some gentle exercise... I'm stretching the meaning of gentle to encompass the C25K, I think :) Will probably start at the weekend... if I get a good night's sleep tonight, I may even go tomorrow. How quickly are you recovering from your runs Greenling?

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That's great news, NoodleUnit! I'm so happy for you. :) Maybe we can work our way through the c25k together?? How's the Tai Chi coming along?

I ended up having to take 10 days off from running. I was starting to really search my diet to try and figure out what had brought back my fatigue, foggy head, apathy, etc., plus heat intolerance. Turns out my thyroid medicine was way too high (I have Graves' Disease, so my thyroid was removed two years ago). I've always had to take a megadose of the medicine because my body wouldn't consistently absorb (turns out that was the Celiac). So, now that I know what the problem is, I am overjoyed. Because this is the second time they've lowered my dose in the last two months (since I went Gluten-free), and if my body is absorbing it more efficiently, then I'm HEALING. :D So even though it makes me feel awful, it's a good sign of progress. Anyhow, I've been on the lower dose several days and I'm feeling better, so I went back to the gym this morning. The running was hard, but good. I'm travelling some this weekend and next week, so I'll be repeating Week 2 next week as well (and maybe for one more). But I'm getting there....

Hope your c25k attempts go well! Have a good weekend!

Greenling

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Hi Greenling

Sorry to hear about having to take a 10 day break, it sounds as though you have it sussed though. :) It's amazing that you can track the healing process like that though. Very demonstrable effect of going gluten free. Have you been following Wimbledon? Interesting to learn that Djokovich went gluten free after health issues and his performance just went through the roof. He seems unstoppable now.

As for Tai Chi, I'm going to give it a miss just now. It's not explosive enough for me even when I'm still recuperating. Daft, I know, but I think I need to go back to it when I'm in my 70's or something. :) I'll be doing Day One on Monday providing I can avoid eating anything stupid over the next day or so. Will keep you posted.

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Hi Greenling

Sorry to hear about having to take a 10 day break, it sounds as though you have it sussed though. :) It's amazing that you can track the healing process like that though. Very demonstrable effect of going gluten free. Have you been following Wimbledon? Interesting to learn that Djokovich went gluten free after health issues and his performance just went through the roof. He seems unstoppable now.

I did see that about Djokovich and it's quite amazing. I'm hoping the same happens to me. ;) I do have to say that the running I've been able to do is already faster than my best effort before (I was verrrry slow) and it's less effort (even starting back). So I do think there's a lot to be said for Gluten-free enhancing workouts (after a fashion).

As for Tai Chi, I'm going to give it a miss just now. It's not explosive enough for me even when I'm still recuperating. Daft, I know, but I think I need to go back to it when I'm in my 70's or something. :) I'll be doing Day One on Monday providing I can avoid eating anything stupid over the next day or so. Will keep you posted.

I can understand Tai Chi not being enough. I feel like I want to GO now that I'm getting better. I'll be re-doing Week 2 starting Wednesday (providing I don't mess up with food while travelling--I'm a little nervous about it). I'll look forward to hearing about your Week 1. Good luck!!

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