Are there any distance runners with coeliac disease here?

[Devjon]

Hello,

I am due to go in for a colonoscopy and Gastroscopy at the end of this month. From my symptoms I am almost certain that I have developed Coeliac disease.

I have been running for over 30 years and regularly compete in Marathons and other races.

I noticed that I was struggling on my runs about a year ago but put it down to getting older.

Earlier in the year I caught the flu type bug which was doing the rounds, and this hung around for nearly four weeks.

I started to struggle even to run five miles and was experiencing palpitations, this convinced me to visit my GP ( I rarely visit the Doctor). He gave me an ECG which was clear and sent me for blood tests.

I mislaid the paperwork so it was a month before I had the tests done.These showed that I had anaemia ( macrocytic )

The follow up blood tests showed that my iron and b12 etc were ok ( I am a vegetarian )

So, my question is, is there anyone in the community who is a runner / athlete and can advise me as to what to expect / how long until my training gets back to normal, and any general dos and donts ?

Many thanks

[Hidden]

Hi Devjon, welcome to the site. I only run 10k max unlike you, but have put running aside for the last couple of weeks due to always feeling sick and dizzy

I think listen to your body and it will let you know when you are ready to get back to your usual routine. In the meantime how about some shorter runs to keep your muscles in good condition and your endorphins high? (Difficult I know - my husband runs long distances too).

Good luck with the endoscopies. I have my second tomorrow and am hoping to get back to "normal" soon.

[Hidden]

Hi Devjon, Novak Djokovic is a coeliac so if he can be a champ it shows that once a coeliac is diagnosed they can achieve sporting success.

Good luck with your endoscopy and I hope that you start to feel better soon.

[Devjon]

Thanks for your advice Jerry and Moggie59.

I am going to start a food/ training diary to keep track of how I respond to various food / training regimes. I have a couple of Ultra Marathons in my diary for next year and the training can be a tad challenging even when fully fit, so it should be an interesting learning experience

[NorthernSoul]

Ultra-marathons? Wow! I can't contribute an awful lot to this but my guess is that you'll probably be back on your normal training regime around 3 months after going completely gluten free as this is when a lot of people find their symptoms have fully resolved. It may well be sooner than that, even.

However, I would say that you should definitely see a dietician if you haven't already, preferably one specialising in sports nutrition if possible. I would either ask your gastro or your GP and make sure you explain the extremes of exercise that you're doing as many regular dieticians may not have experience in this field. Here's a list of registered sports and exercise nutritionists (although I suggest an NHS dietician may be preferable) if you would like to contact them privately: senr.org.uk/search/Registra...

[Devjon]

NorthernSoul,

Many thanks for your reply, I shall certainly see a Dietician, as I said in my original post, I have not been diagnosed yet ( gastro / colonoscopy on the 29th ), but when I checked the symptoms I could tick practically every box.

One thing that I am finding difficult to get information about is the onset. Is it a gradual process or is there a trigger event? I would like to think that it is a condition that I have had for some time as that would explain my deteriorating training ability.

It may sound odd, but I am relishing the challenge of adapting to a vegetarian, gluten free diet coupled with the intensity of training for some long distance runs, it should be an interesting journey!

Thank you again,

Kevin

[NorthernSoul in reply to Devjon]

The answer to your question is that people don't really know. Coeliac disease occurs on a background of genetic susceptibility but the triggering event is still unknown- many people possess the genes that are linked to coeliac but never go on to develop it. It may be completely spontaneous or infection (as is suspected in a number of autoimmune diseases) may be the trigger which causes your immune system to accidentally react against 'self'.

Although you may have only been getting GI symptoms (the usual nausea, diarrhoea, abdo pain etc.) for a certain period, you may have been malabsorbing asymptomatically for longer than that. Indeed, some people are diagnosed with coeliac during routine screening in other conditions and never get obvious symptoms at all. This may explain why the duration of onset can vary in different people. Personally, my symptoms came on over about the space of a week but I had been losing some weight for a few months prior to that. The only way to find out whether any deterioration in your training is due to coeliac (and I suspect it probably is, especially if it has been reasonably rapid over a year or less) is to get diagnosed, get your diet and training sorted and see what happens.

Best of luck! I thinking seeing the whole thing as a challenge is a great way to approach it and I'm sure you'll do very well on a gluten free diet if you are diagnosed with coeliac.

[ianwoowoo]

Hi,

I am a runner and cyclist, I did Triathlon as well up to 2009 when during one event I just

didn't feel good. After that day I was never able to get back to full fitness due to months of feeling totally shattered. I would start to feel better and start training again and after a month or so I sink again. This went on until Oct 2011 when I got diagnosed.

1 year on I am just getting back into shape and my bouts of lethargy are less frequent but I do still get them.

With regards the diet refuelling isn't really a problem, in some ways it helps to keep you away from cakes, biscuits and stodgy pies etc. and tends to get you eating more healthy food, as long as you stay of the GF Aisle in the supermarkets.

Even whenI was in a dip I tried to keep my legs turning over with short runs and I used that as a gauge to see when I was recovering, it is hard work but sounds like like a challenge.

I too kind off relished the challenge of my new diet and as a fairly focused person I found it quite easy to adapt and not be tempted to stray, I suspect you'll be the same form your comments.

Good luck whatever the outcome.

[Devjon]

Thanks Ian,

I know a few Triathletes and am in awe of their all round fitness, running is simply as matter of putting one foot in front of the other, swimming and cycling are a lot more technical.

That is really useful information, I managed a (slow) ten the other day, next day I struggled to run four and had to turn back home.

You say to steer clear of the GF aisle, can you elaborate? I have been venturing down that isle myself, just to see what is about. Nothing seemed inspiring, I have been reading the posts on GFG for discussions of foodstuffs etc which is a great help.

Thanks once again,

Kevin

[ianwoowoo]

Hi Kevin,

I know the feeling, I had 2 great runs in the week but then today went out on the bike and felt like I'd run a marathon before I even set off. It's a year on for me but I'm afraid I still am getting some real ups and downs I'm afraid. I am seeing the Gastro consultant in a few weeks and will be probing for possible causes.

With regards the Free From stuff, I tried a few things and even started with some prescriptions foods, such as bread, bagels, pasta but as well as the nuisance of organising the lists for the doctors, the logistics issues of the chemists the foods were poor and the ingredients are not what you would call healthy. I decided to go it alone and stick to naturally GF stuff instead. My diet is much healthier now because of it, but I still do have a loaf of bread occasionally.

There are a lot of issues to being GF so I hope for you that you get a negative diagnosis and maybe find another cause of the problems you have. Feel free to ask if you have any more questions, it the best way to learn.

Cheers,

Ian

[Devjon]

Just an update,

I have now had 2 colonoscopies and a gastroscopy as well as more blood tests than you could shake a stick at. The specialist says that I do not have coeliac disease though I may well be "intolerant", and that my ferretin, B12, etc etc levels are all ok. I asked about taking vitamin / iron / B12 supplements and was told that they would have no effect. I am still anaemic and easily fatigued.

I will have to wait 3 months to see the specialist again so have decided on a bit of DIY investigation. Since my colonoscopy early last month I have been following a Vegan, Gluten free and Soya free diet. I plan to maintain this for a period of 8 weeks which I would have thought should be sufficient for any changes to "work through my system" and ask for a blood test then, to see if there have been any changes.

I shall then start taking a course of " Floravital " which is a vegan GF herbal / iron tonic and maintain this for a further 8 weeks before requesting a further blood test. Hope fully this should give me some data to show to the specialist.

I need to approach things as though I am conducting a dispassionate experiment, as this is helping me to avoid becoming despondent and self absorbed.

Has anyone reading this tried a similar strategy ?

Best wishes

Kevin