Very timely that news should hit the broadsheets of Novak Djokovic’s rise to success being down to his diagnosis with Coeliac Disease (CD) and subsequent change of diet to gluten free, right in the middle of Coeliac Awareness week!
You can read one of the many articles in the Independent, “Is a gluten-free diet behind Djokovic’s smash success?”.
In the sub heading the Independent refer to Djokovic having a wheat allergy: “The tennis ace attributes his amazing winning streak to overcoming a wheat allergy.” yet later in the article it says he’s been diagnosed with Coeliac Disease.
Already some confusion here about the difference been the two. Coeliac Disease is a potentially life threatening condition (if left untreated) where the lining of the small intestine is damaged, allowing food to leak through the lining, preventing nutrients from being absorbed and leading to many problems such as osteoporosis, anaemia, failure to thrive in children and a much higher chance of contracting certain cancers.
Wheat allergy may also be fatal if anaphylaxis is present, but it’s not the same as coeliac disease and can effect different people in very different ways from IBS symptoms, nausea, vomiting, stomach cramps, skin rashes etc. Somebody with a wheat allergy may well be able to eat rye, barley and other gluten containing grains with no problem because it’s the actual wheat causing them a problem, not the gluten, which is what causes the problems for coeliacs. Two very different conditions, albeit caused by wheat, or more specifically, the gluten in wheat.
It’s thought that approximately 600,000 people have CD in Great Britain alone, yet there is very little awareness of what the disease is, how it effects the body, how to recognise the symptoms and most importantly the difficulties of maintaining a gluten free diet. Serbian born Novak who is just 23 years old, has attributed his success on the tennis circuit to a lot of hard work on the courts and his new gluten free diet which nutritionist Igor Cetojevic helped him to perfect
Around 1 in 100 people in the UK have Coeliac disease, but only an estimated 10 to 15 per cent have been diagnosed. There is no cure or treatment for the disease, the only answer is to completely cut out all gluten, including wheat, rye and barley from the diet for life.
Not everyone has the benefit of their own personal nutritionist like Novac who can help them plan out their daily meals and maintain they stay on track. For most, diagnosis with CD can be a very tough pill to swallow. For others, it’s a relief to get a diagnosis, but it’s not an easy lifestyle, especially when eating out in restaurants or being invited to dinner at friends.
What this article raises is another very important angle. We all know that avoiding foods that make you ill, whether that be down to CD, food allergies or intolerances, can make a dramatic difference to our quality of life. You have more energy, feel happier, healthier, more positive and often it leads to a far healthier diet which has got to be a good thing in the long run. It forces you to examine what you’re eating and take action. Just think of all those normal people who don’t have allergies eating junk food, processed ready meals and without a moments thought to what it’s doing to their bodies.
I’m also not suggesting that by cutting out gluten, or any other food that you might be allergic to could send you rising to fame in an instant. Clearly Djokovic already had amazing talent on the tennis courts. We’ve all heard of him before and seen him win matches, but he was often flagging at crucial points and not quite winning when perhaps he should. Having Coeliac Disease must have made training and long three set matches incredibly tough, with the added complication of an unknown medical condition chipping away at his strength and reserves.
But what about the long term effects of CD and allergies when they go un-diagnosed? How many people out there don’t know that they have coeliac disease? All the time doing untold damage to the lining of their small intestine, which if left undiagnosed can do permanent damage. Usually going on a gluten free diet means complete repair of any damage done to the small intestine.
How do allergies and undiagnosed CD effect exam results and achievements at school? How many day’s off and sickness does the workplace see? How much more could we all achieve in life with the right diet for our bodies?
I’m not say we’re all going to reach the heady heights of No. 1 tennis player in the world but if you suspect you have a food intolerance, allergy or CD, seek medical advice and don’t take no for answer. Try cutting out the food you suspect for a week or two to see if you see any improvement; and I mean really really properly cutting it out – no cheating allowed or you won’t get a true picture. If you have CD it may take a lot longer than a few weeks of abstinence to see proper healing, more like three months.
This news is great for allergy and CD awareness – such a public figure speaking out about his lifestyle change and what a huge difference it’s made to him. You rarely hear about any famous people with allergies, nor hardly any characters on the TV programs we watch with CD or allergies. Is this really the case? or do people just not like talking about it? and directors just not really think it’s interesting for their viewers?
In the article the journalist also refers to Novac’s condition as his ‘secret’. Why should having Coeliac Disease be something to keep quiet about? Why did he keep it a secret? It’s a shame that many people don’t feel confident enough to speak out about their condition or allergies for fear of misunderstandings and derision from waiters, chef’s and acquaintances. It’s something many people think is all in the mind but many of us it’s very real. If you have CD or allergies don’t keep it a secret. Share it with others, explain what it means for you and help raise awareness.
It’s a fact of life, just like the fact that we come in all different shapes, sizes and colours, some of us have allergies, food sensitivities and conditions like CD too which mean cutting foods out of our diets. We’re not making it up. We’re not being fussy. We’re just trying desperately to remain healthy by cutting out foods which make us ill.
Thank you Novak for telling the world about Coeliac Disease. I’d love to hear more, like how did you find out? Did you suspect for some time that food was causing a problem? Does it run in your family? How are you finding your new gluten free diet and what is your favourite gluten free food discoveries?
If you want to find out more read Alex Gazzola’s brilliant new book, “Coeliac Disease: What you need to know” or visit the brilliant Coeliac Disease website at www.coeliac.org.uk which is packed with information, resources and useful links. Don’t be one of the many undiagnosed. Get your health checked out – you never know, you could be the next Novac Djokavic!
Alex G says
There have been so many mixed reports of what Djokovic does and does not have that I no longer believe very much about what I’m reading. I don’t think he has confirmed a diagnosis of CD, and we must bear in mind that a nutritionist alone cannot make that diagnosis. I intend to look into this further.
You can have a true (IgE) allergic reaction to gluten – as well as a coeliac reaction to gluten – I believe.
I have to disagree on the point regarding experimental exclusion. Several points here:
First, excluding gluten for some weeks will, if CD is present, mean that blood antibodies to gluten will not be formed, and future coeliac blood tests may not work, hampering a proper diagnosis.
Second, it’s notoriously difficult to interpret your own results – and they’re subject to your own bias and preconceptions. You need a nutritionist or dietitian, to work with you on a proper exclusion diet – especially as reintroduction phase is the key to being able to diagnose.
Third, I’ve written a lot before on the fact that eliminating a food and then feeling better does not mean you’re intolerant to that food. So I won’t repeat my thoughts on that here, which are already on my blog.
Last, remember that if you’re attempting a ‘gluten exclusion’ (which I don’t recommend), it is extremely difficult to isolate gluten for exclusion without effecting other aspects of your diet. In other words, you can’t exclude gluten without also excluding other components of wheat, barley and rye. You may think you feel better because of gluten exclusion – but it could be (say) wheat starch exclusion that’s actually helped you.
People are too quick to jump to conclusions when they tamper with their diets, I’m afraid, and it is a huge concern from a nutritional and lifestyle perspective.
Alex, once again I have fallen fowl of being a bit blase on my blog and your beady eye has spotted it… I guess what I’m getting at above is that I’ve learnt over the years that I get to know what foods are giving me a problem, but I’m coming very much from an allergy angle and not CD. I know CD is far more complex, as your book explains, and you’re right, this needs to be dealt with professionally by a doctor to gain diagnosis. I think when you are very sensitive you kind of get a radar – I KNOW almost when I’m eating something that it’s not going to be good for me, and getting help from doctors can be notoriously difficult. ie. “Dont’ be silly, this isn’t caused by food, it’s just IBS”. Which is where I was coming from. If you avoid a food and you begin to feel slightly better, chances are you could be onto something. But you’re right, it’s not always so cut and dried.
There is also the point that dieticians and experts are now finding that people who cut out certain foods completely (as you say, not easy to do completely) can develop anaphylaxis in later life. This has happened to me and I wouldn’t recommend it. The advice now is to try to reintroduce foods, if you can, and not if you have a severe allergy, under the guidance of a specialist doctor or dietician. Random cutting out of foods is NOT recommended. For me though, it was a breakthrough.
Further to Alex’s comment above about whether Djokavic in fact does have coeliac disease, a wheat allergy or intolerance and in fact has been properly diagnosed or not seems unclear. We need further verification! Novac? Are you there? We’d love to hear from you!
Alex G says
Ha – wouldn’t it be great it Djoko *did* turn up to comment?
I do get the point about the ‘radar’ but I also think we’re just as capable of getting it wrong – and that isn’t a weakness, it’s just human nature and perception and the tricks our minds play.
>>If you avoid a food and you begin to feel slightly better, chances are you could be onto something.
See, I’m not sure I agree. There can be so many reasons you feel better – of which a physiological sensitivity is just one.
>> There is also the point that dieticians and experts are now finding that people who cut out certain foods completely (as you say, not easy to do completely) can develop anaphylaxis in later life.
I’m not quite sure I follow this, sorry, Ruth. Is there some official guidance or research you’re referring to?
Alex I’ll try to respond, but I’m not an expert, so perhaps you’re right and I shouldn’t suggest people cut stuff out without very good cause. However, when I eat tomatoes by mistake I wake in the night with blisters and clear liquid oozing out. I KNOW that the tomatoes cause this but it took me a while to suss it out. I’ve tested my theory and every time I eat even a tiny but of tomato I’m blistering up in the night. This is not all in my head because I’ve been ‘tomatoed’ by mistake and discovered after an episode what caused it.
As for the other question. People developing anaphylaxis due to cutting out foods too well, and then coming into contact again in later life. This has happened to me and my dietician. Proves that cutting stuff out without good cause is BAD in the long term. The advice now is to try to re-introduce, but once you reach serious allergy levels that isn’t possible. I’m looking for some other evidence of this phenomenon and will let you know if I find anything. I do love your comments Alex. Very challenging. Hope I’m not driving you nuts for getting stuff wrong all the time!
Alex G says
Of course you’re not driving me nuts, and I enjoy the debate!
I find the ‘it’s not in my head’ comment so very interesting, but I think I’ll blog on the issue and come back to it another time.
>> People developing anaphylaxis due to cutting out foods too well, and then coming into contact again in later life. This has happened to me and my dietician. Proves that cutting stuff out without good cause is BAD in the long term. The advice now is to try to re-introduce, but once you reach serious allergy levels that isn’t possible. I’m looking for some other evidence of this phenomenon and will let you know if I find anything.
This is what I want to comment on. I think you’re assuming a causal link between cutting out foods and developing anaphylaxis to them. If you’re saying that you and your dietitian both cut out foods and then later developed anaphylaxis to them, then I’ve no reason to doubt that is true – but how can you be sure the first caused the second? I’m not sure that you can. You can suspect it, and it may seem totally logical to you – but that’s not enough to draw wider conclusions. They could be two independent events that happened one after the other.
Re ‘the advice is to try to re-introduce’ – the advice from whom? In regards to what? Re-introduce foods you’ve eliminated because you had an allergy to them?
I’d be interested in what you find, research-wise. I know that in peanut desensitivity trials, kids who were peanut allergic have to maintain a dose of peanuts daily to keep tolerance – for them, total exclusion would be bad. Is that what you’re thinking of, perhaps?
I can see this comment string going on for ever and ever. Perhaps we need to chat on the phone? A fascinating subject which I’m sure we could discuss for hours! I have found a paper on pubmed.gov called: “Food allergy: from the of loss of tolerance induced by exclusion diets to specific oral tolerance induction.” (something a bit wrong with that title) http://www.ncbi.nlm.nih.gov/pubmed/19076011
The abstract says: “The prevalence of food allergy and anaphylaxis in children is reported to be increasing in recent years. Evidence suggests that exposure to large doses of antigen might produce a suppression of the specific IgE response, so that the continuous contact with high doses of antigens favours the maintenance of tolerance In the same way loss of contact with allergen in children with specific IgE reactivity may favour a loss of tolerance with development of systemic reactions, while a progressive new contact with allergen may favour a specific tolerance induction. We hypothesize that widespread and uncontrolled use of elimination diets for atopic dermatitis may have played a role in the increase of allergy and anaphylaxis. Specific oral tolerance induction may be a possible therapeutic strategy. The article review food allergies caused by exclusion diet and also discuss recent patents related to the field.”
And the reintroduction of foods would only be advisable when an intolerance has been identified and I’ve been seeing a dietician at my local hospital. Through careful reintroduction I’m now able to eat cooked eggs. However, with someone with a real allergy and anaphylaxis you can’t reintroduce, unless you’re one of the lucky few on the desentisiation programme, and then yes, you’re right, in order to maintain the apparent cure of the allergy, they do have to eat peanuts every day. This kind of lengthy and costly treatment is never going to available widespread on the NHS so I’m not getting too excited about it, clever though it is. I’m more interested in understanding WHY these allergies are on the increase and researching ways of preventing it. This is too hard to debate on here. I have so much I want to say and I fear I’m not getting my point across properly to you…
Alex G says
Well we could – but maybe others are reading? I actually don’t want to feel am interrogating you on the phone! Maybe we should get together in town one day for an allergy friendly tea and cake?
An interesting study – which i’ll take a closer look at – though it seems to be one on atopic children only, from which one can’t draw conclusions on the wider adult population.
It seems then you’re talking of intolerance in terms of reintroduction, not allergy?
Hi Alex. Yes I hope others are reading. Tea and cake is always a good idea, but where to find it in London. Know any good places?
I think there does seem to be a link with this phenomenum and with the prevalence of allergies too. If you’re atopic you are more likely to get asthma, hayfever, allergies – the lot! I’m trying to get a copy of the study and more information about this so if I find any I’ll send it your way for your perusal.
And finally, yes I’m talking intolerance. Which is why your advice and mantra about not cutting out any foods without sound medical advice is so important. I think a lot of people cut stuff out after those blood test you can get or after a visit to kineasiologiest, and if they don’t need to it’s pointless, not to mention potentially bad for their health.
Unfortunatly back when I discoverered my lactose intolerance, when I was getting eczema and skin rashes after consuming it, my doctor’s advice was, “Well don’t have milk then. But you can’t have an allergy to milk, that’s highly unlikely.” No one really knew about allergies or intolerances then. I was not given an EpiPen until I’d had a few anaphylactic attacks and then I had to beg for one. I did test after test, ie. having milk, or cheese, and almost instantly sometimes I’d start to flush red and would then get a flare of eczema. Proof in my book that I had some kind of problem, and noone really wants to have a red, itchy rash all the time. Am I waffling? So anyway, I cut out dairy, of my volition, my eczema cleared up and life was good. However, I cut it out so well that after a few years, if I got accidentialy exposed to milk I would go into anaphylaxis. I’ve passed out once from anaphylaxis to nuts. Most people don’t actually manage to cut out dairy completely, and would therefore be exposed to small doses, or exposure on a regular basis. So basically. My advice? Seek medical advice. Don’t just cut out foods without sound reason to do so. Get proper allergy tests done if you suspect you have problems and avoid the allergy tests you can do over the net/post etc. If you have a mild intolerance your dietician (as mine has done) will advise you about how to slowly, carefully reintroduce foods in a safe and controlled way.
NB. IF YOU HAVE A SERIOUS FOOD ALLERGY NEVER TRY TO REINTRODUCE FOODS. ESPECIALLY IF YOU GET ANAPHYLAXIS.
David Waring says
I really enjoyed this article. It is always nice when you read something that is not only informative but entertaining. Excellent.