Celiac Disease and Physical Activity

Hi, I was confirmed via biopsy with celiac today in fact so I feel like sharing the story. whether its any use to you or not is another question! After years of symptoms but being ignored by my doctor and being called lazy by friends and family it was exercise which made me change doctors and get a diagnosis. As well as other symptoms my main is chronic fatigue. Sleeping for 37 hours straight is my record! 20 hours is normal. I also put on 4 stone in a year. Fair enough I suppose if all I do is sleep. So I decided to take up running *again*. I got to being able to run for 5 minutes without stopping over a period of weeks but then I got worse and worse very quickly. It wasn't that I was out of breath it was that my legs would give way benea6th me. Even after days off running to recover the pain did not go away and legs muscles did not recover, so I knew in my own head that it felt like vitamins weren't getting put back into the muscles. I guess the weeks building up to being able to run for 5 minutes or so used up anything that was left and then they were truly empty. So I changed doctors and four months later its been confirmed as coeliac (although I've been gluten free for 22 days - and counting!). Good luck with your work. Kaz .

In my case the adoption of a gluten free diet allowed and encouraged me to increase my physical activity. I hike in the mountains every weekend, but prior to diagnosis my gluten induced anemia had me skipping the high peaks due to reduced power, cramps, restless body, etc. Now I do them all, do them fast, and feel great, like I did 20 years ago.

I agree with John. My physical stamina is much better now that my anemia is resolved. I really hadn't noticed any specific problems before my doctor followed up on the anemia and diagnosed celiac disease this winter, but this spring I have the energy and stamina for longer hikes and recover faster.

I was diagnosed in late Feb 2000 as I was finishing up my training for the Boston Marathon. At that time my long runs were planned so that there were plenty of wooded areas I could run off to. Since being on a gluten-free diet, I no longer need to worry about intestinal discomfort and my training and racing is better than ever. Last year I was ranked as an All American male triathlete in the 45-49 year old age group. I qualified and competed in the World's 70.3 Championship which completed my year of doing Boston Marathon, four half-ironman races and various other smaller triathlons and running races. Being diagnosed as Celiac Sprue to me has been a blessing in disguise as I need to always eat healthy to stay in shape and maintain my energy levels. The past few years I've noticed a lot more sports drink mixes that are now Gluten Free and are great for high caloric nutrition during the long workout sessions.

I was diagnosed with Celiac almost 3 years ago. I had started exercising at a 'ladies club' and even took up slow running. 6 months before my diagnosis, I started having such Strong intestinal problems (flatulence with bowel leakage) that I had to give up ALL physical exercise due to the imminent chance of an accident. I am happy to report with symptoms under control, I have re-started regular exercise. Fascinating study!

I found this article very interesting but became confused at the paragraph which starts out:

'Certain studies have shown that allergies can exacerbate or induce food-dependent allergy symptoms (Sampson, 2003).'

My understanding is that celiac disease is an autoimmune response and not an allergy.

Are you saying that someone with celiac disease can also experience an allergic reaction which is exercise related?

Before I was diagnosed with Coeliac Disease, exercise was the only thing that made me feel better, since eating healthily at the time was still hurting me due to gluten.

Now, I am mid way in the healing process and on a strict gluten free diet, I find that exercise hinders me because it makes me too hungry (I am hungry enough since I don't absorb nutrients properly yet), so I avoid heavy exercise. When I heal more, I'll slowly increase the exercise, but for now, I just stretch or do some yoga (or veg on the couch instead!)

I have a lot of various and complex symptoms. I was finally diagnosed last October after 30 years of trying to find answers. When I was a child I was a competitive swimmer, dancer and skier (snow and water) but staying physically active became increasing difficult for me as I got older. I often experienced increasing fatigue, headaches, nausea (with occasional vomiting), ear ringing and burning skin when I would exercise. Body pain did not affect my desire to exercise as much as fatigue because I was often in physical pain, whether or not I was exercising.

I am 46 years old now. Up until last year, I walked about 1 hour/day and enjoyed hiking. During the past year, however, my fatigue and weakness has been extreme and I haven't been motivated to do any physical activity. I have gained weight and lost a lot of muscle tone. I also seem to have skin reactions to everything I touch now and I have reactions sometimes when I haven't eaten or touched anything. I believe I need to have extensive allergy testing done.

I finally got tested for B6 and B12 deficiency and was told this morning that I am 'slightly' B12 deficient. I was previously told that I am not anemic and that my bone density was good. None of my doctors has tested me for other possible vitamin deficiencies. I am hoping that the B12 deficiency is responsible for the muscle twitches and weakness that I have been experiencing.

Thank-you for this information. It helps me understand what has been happening to me since my doctors don't seem to know or understand the symptoms. Their management of Celiac Disease seems to be limited to telling me to go on a gluten free diet with the addendum, 'there are a lot of resources out there' (i.e 'your on your own!) They only seem do more testing when I tell them that I'm still in bad shape and I absolutely need something, so it is up to me to find out what I need.

This article made very interesting reading, as do the comments of the other readers. I am now in my mid-forties and have not technically been diagnosed as a celiac, probably because I have been trying to avoid eating wheat for some years. I was originally diagnosed with IBS and left to figure out how to survive by a very disinterested physician. The result has been that I have tried to follow a 'healthy' diet which included barley, rye and oats. I have been very physically fit in the past, training in karate four times a week and more for four years as well as working as a full time gardener. Over the last four years, my symptoms gradually worsened and my new doctor suggested that I may be a celiac after an extreme reaction to a meal. For me the biggest deterrent to exercise related to the intense pains that I experienced in my joints, bones and muscles. These were so severe at times that I could hardly put one foot in front of the other! Even after following a strict gluten free diet for almost a year my stamina and energy levels fluctuate and there are times when I am totally exhausted. I walk regularly and am hoping to take up more intensive exercise in the coming months. From my point of view it is not the desire to exercise that is absent it is purely down to having the physical ability to do so, although now that the physical pain has gone it's much more appealing now.

Posting this article and getting public comments is an interesting way to get data for your study. Like some others who've commented, I was anemic and had a lot of pain before diagnosis. Though I was always very active (running, hiking, dance), that was a real problem. Now, at 58, I have a lot more endurance and enjoy bicycle touring and other strenuous physical activity.

Hi Claire,

I am curious if you know of anyone who is studying the attitudes of children with celiac disease toward physical activity?

We have a 12 year old daughter, with celiac disease, and Type 1 Diabetes. She is very athletic, training at a high performance level (provincial) in one of her many sports. She is a very picky eater, thus a concern on our behalf, for her ability to sustain a healthy body while being physically active.

My husband, daughter and myself now all eat gluten-free, while we have not been diagnosed as celiac we are sure that we are all gluten intolerant and have other food allergies (dairy and egg) as well. We have been gluten-free for 5 weeks and I have had the best result of the three of us. My Arthritis has improved about 80%. The swelling and pain in my joints and entire body has decreased to the extent that I want to excercise, I haven't felt this good for 20 years! My stomach problems were always put down to IBS (as were my daughter's), but I think that is what the doctors say when they run out of ideas. No doctor and I've seen plenty... has ever said that our health problems could be diet/food allergy related and I wish they had because I've had to figure this all out all by myself. My husband was tested and confirmed as wheat allergic years ago, but wouldn't try going gluten-free, he was always very active and fit but for the last few years he becomes ill if he tries to exercise regularly which really makes him scared to exercise. He has not felt much better as yet but has agreed to keep up the gluten-free diet as its easier now the we are gluten-free as well. I hope to be able to start doing gentle exercise soon and regain some fitness, as in the five weeks I've been eating gluten-free I have lost about 3kg without even trying! And although eating gluten-free is a challenge I will never go back to gluten.