Being a coeliac

I have been coeliac (celiac)  for almost as long as I can remember – ever since I was diagnosed as a young child failing to thrive. I guess I was lucky to get diagnosed way back then. Even today, here in Europe I think the diagnosis is not always an easy path.

Both my daughters also have the condition – intolerance to gluten, and inherited it from me. The chances of being coeliac if a parent is, is 10% higher apparently, but more of that later.

Getting my first child diagnosed was also not easy. She had all the symptoms, she was failing to thrive, her nappies – you did not want to go there. Bu the doctor was slow to recognise the symptoms. He claims not to have understood what I was telling him when I explained, in my admittedly not so great German back then, that I too was coeliac. Of course in German it is Zoeliakie, maybe that was the problem. Anyway, she got diagnosed in the end, and in Switzerland it is not too bad. if a child is born with the condition, as both mine were, then you receive an allowance towards the food until they are 18. As an adult I could claim something from my tax, although only when my total health bills including the allowance exceeded 5% of my taxable income. Other than being coeliac I am very healthy, as is my eldest daughter. Both of us seem to be immune to the flu that my husband and youngest always get every year. Being healthy means lower health bills, but that is okay, it is better to be healthy than get some extra tax allowance.

Here in Germany I am not aware of any special allowances. The girls are both over 18 now, and the tax office does not care about our extra costs. For being coeliac is expensive.

I cannot grab a sandwich or a piece of pizza when I am out. I always have to get at least a salad, or go in a restaurant. The main gluten free fast food in Europe is fruit and chocolate, and not all chocolate is gluten free.

The special gluten free bread and pasta etc, is also expensive, although less so here in Germany than in Switzerland. In the UK it is even cheaper, and some available on prescription. The choice is vast, and even Domino´s pizza deliver gluten free there. It has moved on a lot from when I was a child and my mum had to bake all my bread from scratch, and gluten free pasta was unheard of.  When we were in Scotland the year before last, even the smallest tea shops had gluten free options, it was never an issue in a restaurant, they understood the requirements. it was like paradise for us.

The difference I believe lies in the differing spread of the condtion. In the Uk and the US it seems to be around 1% of the population. In Finland apparently it is 2%.  Here in Germany it is estimated at 0,3 to 0,4% of the population. Just 322000 in the whole of Germany.

I cannot believe those figures to be honest. Where I work there are 3 of us, that is 3% of the workforce. In our household there are 3 of us with it, but nobody has ever recorded that fact in the official statistics. In my daughters classes, both here and in Switzerland, there is at least one other person with the condition. In the Church I was at in Switzerland, there were 4 to 5 of us, out of a congregation of around 120 people. Okay, that was an international church and 2 of us were Brits, but even so, are we really that different?

I was reading that there is a genetic predisposition to Coeliac, and that is due to a specific gene. As I mentioned before, if a parent has it, it increases the child’s chances by 10% of getting it. I am still not convinced. Both my kids have it, so to me the chances seem higher than 10%. I know of several families where there is more than one person affected.

I was reading a very interesting thread asking why it seems that in the USA it is becoming more and more prevalent. is it better diagnosis? Is it a health fad? Or is it something more serious?

I think there is definitely something to be said for the first two cases. Diagnosis is a lot better than it was. In the US I know that there are parents who having heard about gluten and the effect on those suffering from intolerance, and maybe linking it also to hyperactivity, even though there is no link in non-sufferers that I am aware of, then these parents just do not allow their kids to have gluten – poor things.ImageOther people, mainly in the US again, see avoiding gluten as a diet fad to get some weight off in a short period. Yes, if you avoid bread, cakes and biscuits you will drop some weight, as gluten free is a healthy diet.

Anyway, going back to this thread  it seems that one reason that there is more and more gluten intolerance in the US and Canada, is because of the wheat used there, the modification of it, the processing of it, often at very high temperatures, the additives and the preservatives.

I have never eaten American bread, and being coeliac, I never will, but it sounds like a very different animal to European bread. There were many North American people claiming that in Europe they can eat the bread without issue. Very interesting. It sounds more like a wheat intolerance than gluten in that case. For I cannot eat European bread – although I never try, so maybe I can. I remember reading once that the first real research about gluten intolerance came about during one of the World wars – probably number II, when children evacuated from Holland to Britain suddenly started thriving, where before they were ill. It was traced to the different sort of wheat.

So what is it? is it a genetic defect, a missing enzyme, an inability for the body to process wheat that has evolved far faster than we can keep up with? Maybe gluten intolerance is not the same to all people, and some just need to change their diets to a more healthy, less processed way of eating. I hear that in the US there is an artificial enzyme that people can take to help them process gluten, but in many cases it makes them feel worse than if they just ate the gluten. Maybe that is because they are not really gluten intolerant at all, and it comes back to the processed food so loved in North America. These processed foods are causing all sorts of issues to our bodies digestive systems that have not evolved at the same pace as the food industry, and so people find that when they avoid gluten, and therefore avoid processed wheat products, sugary donuts, cakes and biscuits etc, they are naturally making more healthy choices so they ailments go away, and they assume they are gluten intolerant, whereas maybe they are not.

And perhaps this brings us back more to why here in Germany there are “less” coeliacs as a % of the population than in the UK or other places. Maybe here we eat healthier – sausages with no added cereal, bread from the local bakery using better wheat, and potatoes and sauerkraut as staples. So maybe the natural level of gluten intolerance in a population is nearer 0,4% and not the 1% or higher we see in society where sliced bread and processed cheese slices, along with cream from a squeeze tube are seen as normal.

Not sure what they are doing wrong in Finland though.

Oh, and let me finish by reiterating some of those things you should not say to a person who is coeliac:

1. No wonder you are so thin

2. What happens if you eat gluten then? ( if you really want to know, look it up)

3. So I guess you cannot eat chocolate / ice cream either ( we are not necessarily lactose intolerant too)

4. Ah, that is just a fad isn´t it?  – no, for us it is a necessary lifestyle.

5. I would just die if I had that allergy. I could never give up ……….

6. How about just trying a little piece, or just scrape the top/ bottom off it………..

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5 thoughts on “Being a coeliac

  1. You forgot a few things there; first of all, there are not that many people in Finland, there’s a danger to sleep with your cousin (that’s why they developed that app to see if you’re related, remember?) so there’s a higher chance of people being celiac.
    Also, your forgot to mention the taste – or rather the lack of it. Yes, things have improved a lot in the last few years. But the toast still resembles cardboard. Oh and then there’s the birthday-party situation.

    “Oooooooohh this is soooo yummy! SUCH a shame you can’t try it?” the other little kiddies say, referring to the kids. “Oopps, I forgot you can’t eat it.” The parents say every time OR they say: “Oh yes, I have something for you too! Here’s a cracker!” (And I mean those dry crackers you can’t eat without a topping).

    But otherwise 🙂 Good post. But I don’t suppose I get to eat normal, fluffy, tasty bread now, do I? After all, we’re already IN Europe…

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