Monday, 14 May 2012

It's only a diet.....right?

This week is 'Coeliac awareness week'.  There aren't many 'awareness weeks' we can be involved in, but this is definitely one that we can raise awareness for.  Coeliacs disease, more recently, has been viewed as 'just a diet', the 'diet of choice' when trying to lose weight.  So many people have decided to go 'gluten free' that sometimes people misunderstand the real meaning behind being a coeliac.

Coeliacs disease wreaked havoc on two of my children's health.  And without following the strict diet plan, they end up very ill. 

Cameron was 6 months old when we noticed he started having problems gaining weight.  Up until that point, he did quite well, he was never huge, but he was making progress.  We hit 6 months old and all of a sudden he didn't grow.  He was lethargic, and grumpy, acted like a child who was starved, and to many people, that was what they thought he was.  I was 19 when I had Cameron, and I already had Katrina who was 3 by this point.  Cameron LITERALLY acted like I never fed him.  I was accused by very close family members of not feeding him.  It was horrible to be accused of denying your child the thing they need in order to survive, let alone be accused by someone that close to you.

Even now, people don't understand.  Cameron has had the blood test for coeliacs disease and it always comes up negative.  Even when he was eating 8 weetabix a day for breakfast.  It's not commonly known that you have to be eating quite a large amount of gluten in order for the test to be accurate in the first place, but sometimes even that isn't enough.  It isn't for my boys.

Because of the nature of Cameron's rare coeliacs disease he needs short courses of high dose steroids a couple of times a year.  He also can not eat wheat/soya/dairy or eggs.  He is not lactose intolerant, it is in fact the protein he can not process, as the body processes these proteins in the same way it does with gluten.

So, what is Coeliac's disease.  I'm sure there is some fancy way of putting it, on Wikipedia, but the way in which I understand it (and explain it to my children) is this.  In your digestive system there are lots of Villi.  These look like fingers, and when you eat, all the good bits of food go between the fingers and are absorbed and help you grow and be healthy.  When you have coeliacs disease, the gluten fills up the holes between the fingers, and makes the surface flat, so none of the good stuff in the food is absorbed, it just rolls over the top.  And when you don't get any of the good stuff from food you don't grow, and you feel sick and tired all the time, and it makes your stomach hurt.  When you don't eat the 'bad stuff' the holes stay open.

OK so it's very basic, but I'm sure it's basic enough that people understand.  So, how does this affect our lives.  Well, like I have said 3 out of 4 of our children (all the boys) are on 'the diet'.  It sounds simple doesn't it?  The boys can not eat, bread, cakes, pasta, yogurts, cheese, milk, chocolate, ice cream, donuts, sausages, burgers, pies, rice pudding, pizza, pretty much anything that is processed.  So, what do they eat?  Well a lot of rice based foods, and corn based.  So they have corn pasta, and rice milk, sometimes rice pasta, rice noodles.  A lot of food we have to make from scratch.  No 'shove it in the oven' stuff.  Oh and to make it harder, it's not as simple as 'they can have tomato sauce' it varies brand to brand.  The supermarket shop, used to be a nightmare, and still is sometimes when brands change their recipies, the 'new' you see stamped across packaging, isn't always a good thing.  Or if there is not enough demand for a product in your branch, they will just stop stocking things all of a sudden.  So, tonight, my boys had a treat.  Ayden actually told me I was the 'best cooker' because I made them pizza.  I substitue EVERYTHING.  From flour, to eggs, to the cheese on the top.  And it's not 'just' a diet.  Anything that is contaminated by gluten, also makes them sick.  So, if we are making Spag Bol, we have the mince in one pan (which is 'boy friendly, and we all eat it), then 'our' pasta in one pan, and 'boys pasta' in another pan.  I can not stir our pasta, and then using the same spoon stir the boys pasta.  That is contaminated.  We have two toasters, for the same reason.  Contamination.

The boys are very good with their diet, they know what they can or can't eat, but sometimes even I get a little shocked what companies put flour in!  They do suffer though.  They miss out on parties.  Either because I am not confident that they won't get 'glutened' or because they aren't invited because they are the 'kids with the weird diet'.  They can't have birthday cake.  Infact my boys have never had a birthday cake.  We can never go for a day out and assume we will be able to just 'grab' something to eat.  It doesn't work like that.  In order to eat out, you have to trust the chef of wherever you are going, and MOST of them don't understand.  They think you can just 'scrape' off the gravy, or 'brush off' the crumbs of the bun they forgot you didn't want.  It isn't worth the risk.

We got used to the diet pretty quickly with Cameron, and the difference in him was amazing.  It took a little while for us to work out what exactly needed excluding, but once we got our heads around it and got stuck in, the hassle was worth it when you saw the difference in Cameron.  While this was happening, I was pregnant with Ayden.  We asked what the likelyhood was that he would be affected and we were told probably none, the form that Cameron has is so rare, that it's highly unlikely we would have another one.  They were wrong, very wrong.

Ayden was born, and everything seemed fine.  Infact, he thrived.  Very well.

He was fed on breastmilk only.  He always seemed to be hungry, but then, often babies are.  It was so nice to see him feed well, and gain weight very well.  He met all his milestones, and was happy and content.

This was Ayden at 3 months old.  HUGE.

Then we started weaning.  We didn't really think twice, weetabix for breakfast, afterall that's always what is recommended isn't it, after baby rice?  So that was what we did, and within a week, the signs were there again.  He was grumpy he would constantly scream, he wouldn't sleep, they blamed colic.  I blamed colic, but something nagged at me.  Then the weight started to fall off.  No one would refer him to the man who diagnosed Cameron.  They kept saying the statistics were impossible.  No one would believe that it was possible he had the same Coeliacs as Cameron.  They made out I was putting my mental health over Ayden's needs.  They were trying to blame me again.  We were in and out of hospital with him, trying to find out what was wrong.  No one would listen to me, all the signs were EXACTLY the same as Cameron.  Ayden went from FAT to.....well......see for yourself, in 4 months this is what happened.

No one could believe it was the same child.  He would eat and eat and eat and eat, and yet still he would lose weight.  We took Cameron to his appointment at GOSH, we couldn't take any more.  Ayden came with us, and GOSH took one look at him, and demanded a referral.  From there, aged 11 months old, weighing 13lb, we were rushed through.  We were asked what we thought the problem was.  WE were ASKED what WE thought.  FINALLY.  So I wasted no time in diagnosing him myself.  We were told how unlikely that was, but it was agreed they would test for that first.  So, a few weeks later, Ayden has his endoscopy, colonoscopy and biopsy.  A couple of weeks after that, the verdict was in.  Infact, it couldn't wait for an appointment, we got the results from the consultant over the phone.  He had the same coeliacs as Cameron. 

So, out went the dairy, the soya, the eggs, the gluten, and the wheat.  In went an NG tube, because by then he was so exhausted and feeding was so tiring, that he was struggling.  He was on a regime of 2 hourly feeds, whatever he didn't drink, went through the tube that was in his nose, into his stomach.  Effectively he was force fed.  He also needed a few doses of steroids to kick his body back into shape.  But it was worth it.  He went from skinny.  To overweight.  It took it's time, but it worked.

So, no.....Coeliacs disease is not 'just' a diet.  It ruin's lives, it affects all different people, all different shapes and sizes, all different ages.  1 in 100 of us has coeliacs disease, but only 10% of people know they have it.  The average amount of time for diagnosis is 13 years.  We have been very lucky, we still have our boys, but, due to a 'diet' we nearly lost them both.  If they are 'glutened' now, we know about it, and can usually pin point the problem and eliminate it.  It's a 24/7 job, from making sure there are no crumbs on the floor, to making sure you wash up properly.  Making sure the worktops are spotless, to checking you haven't used the cutlery already.

Coeliac UK this year are asking people to take the challenge.  Can you go a whole week eating like our boys do?  Give it a go, and see what they have to live with.  Then remember they are 3, 4 and 6.  And yes, it's difficult, but it's what they have to do to live.  It's not a choice, it's not a fad, it's not a way to lose weight.  They aren't being picky or fussy, and we are not being over protective, pain the backside parents.  It's a medical condition.  Look what it did to Ayden, the pictures speak for themselves.

We have Coeliac disease, but we don't let it stop us.

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