We have an autoimmune disease which we are lucky in that it can be controlled by diet alone. But if it is untreated or not treated well it has serious consequences not just in our gut but in our bones, vitamin levels, brain, blood etc. I think we sometimes are our own worst enemies because we underplay the disease ( no-one want to be seen as a moaning Minnie) presenting it as an allergy or an intolerance that will make us sick for a few days if we slip up on the diet, instead of a well researched, well documented autoimmune disease that if it is not controlled by diet can have serious hidden consequences. I, like many other coeliacs, have other autoimmune diseases which have to be treated by steroids and immunosuppressant drugs, which have lots of side effects so giving up gluten for me is a no brainer.
Can I make a plea that all of us who ... - Gluten Free Guerr...
Can I make a plea that all of us who are coeliac stop saying that we are allergic to or intolerant of gluten.
It is not underplaying our condition if we say "allergy" rather than "autoimmune deficiency". From my experience, there are many people who do not know what gluten is or where it comes from let alone the difference. One person even asked me, when I said I had an "autoimmune deficiency", if that meant I had AIDS.
So it is not as simple as calling it the right term. Yes, we need to educate those who deal with our food but in a busy restaurant I won't struggle to explain an autoimmune deficiency when saying allergy seems to be understood.
And I don't feel lucky that I don't have to take medicine to control it. In fact, I'd happily take a tablet every time I ate if it meant I could eat normally with fear of the consequences.
No I understand in a busy restaurant that using the word allergy is helpful. As for taking a tablet given the steroids make me blow up so I look like an elephant and the immunosuppressants make me throw up every day and potentially damage other parts of your body I am not so sure you would.
I've had a long period of steroids myself. I appreciate medication affects individuals in different ways ( my Mum feels tired when taking iron tablets for example, which is not the normal response ) so I understand that your medication may interact with you in different ways. However, I wasn't talking about the interaction of medication but how I don't feel lucky that I have to be very careful about what I eat and that it wouldn't bother me to take a tablet before every meal if I could just eat normally. It is a blue sky ideal that I doubt will happen in my lifetime.
Sometimes it makes it easier to explain, "Think of it like an allergy, a really serious one like peanut allergy, except it works differently in the body. I can't eat even one of your lovely [insert name of unwanted food item here] because it will not just make me ill for days but could shorten my life span".
That usually stops the doughnut pushers in their tracks!
Yes that I agree with. I think that approach gets over to the listener the seriousness of the illness. It's just recently I have had a couple of comments from people saying but what is the big deal you will only have a stomach upset for a couple of days.
As I recently said on another post when I explained to someone recently that I had been ill they said 'have you still got that?' Other comments are similar, 'is it still giving you trouble?' Problem is I don't think I fully understand either! I am completely overwhelmed by this and so is my family. I think people think I am neurotic about food.
I think that is the problem we are seen as people who are neurotic about food instead of people who when they eat gluten it triggers their immune system to attack our bodies causing our intestines and lots of other parts to get damaged and potentially gives us osteoporosis, heart disease, cancer as we can't absorb the things we need from what we do eat due to the damage. You wouldn't expect a diabetic to eat things which trigger that disease so why expect us.
You are probably very right. I have only had this for a year so only have limited experience - my own. But you make excellent points about the long term damage which I haven't gone into with my friends/family. They just think that if I eat something dodgy I get sick and get over it. That's probably my fault for not telling them more.
You are not being neurotic. The sooner you get seriously pernickety about removing all gluten contamination from your food, the less chance you have of developing other autoimmune diseases or cancer and damaging your body in untold ways which could shorten your life. This is serious. I've worked in catering and felt a little exasperated by faddists who are 'avoiding wheat, but this cake looked so yummy' and maybe some of the people we encounter will tar us with that brush. Whatever other people think, you need to take control of your diet because that is how you will lead a long and healthy life. Note-to-self rant over :o).
Thank you! 
I so totally agree with what you say,………. and really don't understand people who say "i am just a little bit coeliac" and happily eat some gluten containing food, maybe there is not enough said to them about the unseen damage that persists when gluten is eaten and has future health consequences. With coeliac disease we have to be WELL INFORMED, and tiresome though it is, to be thought fussy or pernickety,be vigilant and refuse to eat gluten containing food. IN the end it is one's own health on the line and I for one prefer to feel as well as possible as I certainly ENJOY my life more , also if we are implacable in our approach people may realise the seriousness of the disease and it's consequences
It's the same with any chronic illness - not just coeliac. People don't understand that illness doesn't cover only short term viral illness. And please don't underestimate the seriousness of food allergy.
I think if you go on about the ins and outs of coeliac people will just think you're a crashing bore and avoid you.
Educate by all means, but don't be so angry about it.
hi agree if i have the time to waste .THAT IS THE MAIN POINT time.
I agree, but then (as others have said) sometimes its easier and quicker to say I can't tolerate gluten it makes me very ill and I may be sick on your shoes.
However the last twice I have been inadvertently 'glutened' I have emailed the culprits and stressed that its not really the short term consequences I worry about such as being sick, bloated having diarrhoea and generally writing off 2 or 3 days..Its the long term consequences I worry about most, osteoporosis, cancer and anaemia for instance.
The word cancer can often set folks back on their heels..
Interesting - I don't feel the need to under or over play it tbh, if the need arises (i.e. when declining / ordering food) etc. I merely say I'm Coeliac, if that prompts a question I state that eating gluten makes me terribly ill, most people don't probe any further and those that do tend to be genuinely interested so Im happy to talk about it, but I don't want to walk around presenting myself as a serious medical case as I think it only adds to the hypochondria assumptions! Gluten impacts my neurological symptoms much worse than gut ones, which is even harder to explain by using allergy or intolerance, well to the (blissfully) ignorant anyway, so I never use those terms.
Yes! When people ask if I'm allergic to gluten, I say, No, I'm coeliac - it's an autoimmune disease. If THEY insist on downplaying it, I explain that being glutened increases my risk of cancer - the C-word usually stops them then. Or I can show them my glamorously arthritic, psoriatic, weird-warty hands!
Totally agree as I have another auto immune as well, but have also been guilty of the "allergy" comment but only in restaurants just to be understood! I will try not to do it so often in future!! xx
Its ok saying We have an autoimmune disease which we are lucky in that it can be controlled by diet alone, well like myself it is not I have type 1 Refractory Coeliac Disease with a marsh grade 3b villi, 4 being the worse and it is no better even with chemo drugs, at present they are even unsure how to treat myself which is quiet frightening, I understand this one is rare but there is not many who you can talk about it as i dont no anyone with it so i feel very much alone coping with this, the Professor in sheffield has told me that if he is lucky, he can see one a year but we can have different symptoms, plus it is very to hard situation to be in as i dont fully understand it myself, this has put extra stress on my health now constant chest infections which are getting worse, uncontrolled asthma and possible COPD (never smoked) chronic fatigue and extreme tiredness, memory loss,and unstable on my feet, also being on the chemo drug that brings other health issues,
I understand this completely as apart from coeliac disease, I have autoimmune thyroiditis and lupus and hyperparathyroidism, hyperaldestoronism, Meniere's disease and also have to take the chemo drugs and steroids. Plus I have osteoporosis, high blood pressure, heart disease and white matter changes in my brain. So I know what it is like when an autoimmune disease gets out of control. I hope you are getting better
I consider that I have a health condition that belongs to me, I have no concerns how other people see it and over the last few years have used menu's in restaurants and the knowledge gained of what I can & cannot have to eat and as a result have gained weight and my health. I do not state I am on any diet but to others I tell them what I cannot eat which gets me by. The GF diet is a health risk to me because of its ingredients and my other allergy reduces my diet further. Yes I am a diagnosed Coeliac (twice plus one confirmation). Everyone is different with this condition so have their own views of how to deal with it, there are even some who are not coeliac's but live the lifestyle offering others advice that might not be applicable to their condition.
I went to an ENT consultant last week and during medical history consultation said I am Coeliac, and he replied "Oh, you're gluten intolerent". No, I am coeliac. If with many years medical training he is unaware, what chance does the man on the street have?
In an article in today's Daily Mail a Doctor describes coeliac disease as "an allergy to gluten, the protein in wheat". #deep sigh. And he's a Dr giving advice in the press!
Ah well the Daily Mail !! Nevertheless it's in the public domain and they should be more careful even if that might break the habit of a lifetime.
I saw a (stand in) GP recently who said exactly the same. It's a bit worrying.
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