It’s just coeliac disease. Why worry?

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”It’s just coeliac disease. Why worry?”

This is what I was told by my gastroenterologist this morning at my follow up visit when I asked about whether I can test if my daughter has the coeliac gene.

We have all heard dismissive comments about coeliac disease from friends, colleagues and even family members. I have been told that a little bit of gluten will not kill me by a restaurant owner. I have been labelled a fussy eater by others. But to be told that I should not worry about coeliac disease by a consultant gastroenterologist is infuriating and disappointing.

I wanted to give the dear doctor an earful about the difficulties we face on a daily basis. I wanted to explain how frustrating it can be when people pass our diet off as a fad or trend. I wanted to let him know about the worries we face when dining out, the planning involved in going on holiday, or the constant need to scrutinise labels and watch out for cross contamination. He should know that we agonise about associated auto-immune conditions, consequences of late diagnosis, and the severe health consequences if we are not careful with what we eat.

I wanted to tell him that I worry a little every day.

But all that came out of my mouth was:

”she is just a child. It is harder for children”.

I do not know why I felt the need to control my emotions. After all, his remark was unnecessary and insensitive.

These comments are not helped by the fact that some people follow the gluten free diet to lose weight or eat healthier, but then forget their special diet when the situation is not ideal.

A while ago, I posted the below ecard on my facebook page http://www.facebook.com/thecoeliachub.

Attitudes like this dismiss the severity of coeliac disease and turn it into a joke. Some might find it funny, but I do not. It all boils down to lack of information and awareness about our condition.

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Have you ever been told anything that makes you seem fussy or that makes light of coeliac disease?

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11 thoughts on “It’s just coeliac disease. Why worry?

  1. Mine told me ‘ Miskina’ while tucking in a gluten filled cereal bar! I don’t feel ‘miskina’ as I am capable to adjust whatever the circumstances. But the professionals should not wave away our concerns with idiotic remarks! What they should be doing is to make people more aware of coeliac disease and introduce coeliac blood tests regularly as they test for sugar levels, cholesterol and other serious conditions. The truth is that they do not consider coeliac disease as life threatening and which can also cause cancer!

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    • I agree Mary Anne. I don’t think any of us like to be called ‘miskina’ or be told ‘poor you’ (for our English speaking readers). It is true that our condition can be controlled by diet, but it is life changing and sometimes can cause problems. Plus, we have to deal with complications resulting from a late diagnosis and have to worry about preventing others.

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  2. You have a “special” diet? You think you’re “special”?

    Can’t you just scrape off the breadcrumbs?

    Why should the rest of us have to eat in a different place just so you can eat?

    Sure, don’t worry, there will be plenty of stuff for you to eat. (When I got there – the only thing not covered in sauce or breadcrumbs or whatever .. cucumber slices)

    Help yourself to the biscuits and cakes everyone (my department, who I’ve worked with for years, still struggling to grasp that I can’t eat biscuits and cakes)

    After long discussions in a restaurant about gluten, checking things were OK, the nods, the smiles, the reassurances .. then finding croutons, breadsticks, clearly non-GF sauces etc. brought with your meal

    .. it’s a constant source of joy, isn’t it?

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    • Richard, I really do understand you. Your last point about the restaurants is what gets to me most. So many restaurants claim to cater to coeliacs, but I have been disappointed too many times to mention. A common statement is ‘its a buffet so you will surely find something to eat!”- with no idea about hidden ingredients, cross contamination and how the food was prepared.

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  3. I was told I would grow out of it by every doctor I saw from the age of 2 (in 1975) till 16 (in 1989). Of course I never did. They also used to tell me I could eat a small piece of cake on special occasions without doing any harm!!!! I had hoped things had changed because the research has certainly shown that you will NOT grow out of it and a little crumb can certainly do a lot of harm!!!!

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    • Rebecca, I do think that awareness in the medical field has improved since the 70’s and 80’s. But sadly, I have heard a person say that their doctor told her that she can occasionally ‘treat’ herself to gluten. What a treat!! I am sure the doctor would fancy eating poison as a treat- it is the same for us- gluten is our poison.

      I do not wish to group all doctors under the same umbrella. Many are brilliant and keep up to date with the latest research. But some times, even the brilliant ones can be insensitive, as is the case with my doctor yesterday.

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  4. It is usually extended family that thinks my daughter and I (both celiac) are picky eaters. They tell us to come and bring our own food if we are concerned. Then they bake bread and have shellfish everywhere when we have severe reactions to both. It is not a family gathering when we have to be armed with epi-pens in case someone hugs us.

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  5. When I had to have an unrelated test in hospital a nurse said to me “you can’t have coeliac disease, you’re fat”. I laughed and said that I wish she’s tell my body that!

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    • Thanks for your comment Joanne. The nurse’s opinion is a myth that came about because it used to be thought that coeliac disease was a disease of underweight, porly developing children and it used to be called ‘failure to thrive’. I think that nurse needs to update herself on the current knowledge that people diagnosed with coeliac disease can present as underweight, normal weight or even overweight! According to NICE guidelines, body weight alone should not be a deciding factor of whether you should be tested for Coeliac disease.

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      • I resisted the temptation to tell her she needed to re-read her textbooks before she commented further. At that stage I’d been diagnosed for over 15 years and followed the gf diet 100% of the time.
        I was later diagnosed with Hashimoto’s and to this day I am unable to lose weight without tremendous effort.

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