My life in Science whilst raising a child with type 1 diabetes

Biomedical Science, Type 1 Diabetes, Coeliac Disease and other findings


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Gluten Free on Prescription – our truth, our lives!

Background

OK so here’s the thing, at age 4, as you know my son was diagnosed with an autoimmune condition known as Type 1 diabetes. We were told it was life threatening with lifelong insulin replacement treatment the only option.  We were told no one knows why it happens, it was not our fault as parents and that it was unpreventable.

As a side note, we were warned that he may also develop Coeliac Disease – another autoimmune condition, genetically linked with Type 1 Diabetes.

You can google the rest I’m sure.  At age 8 – 4 years later, he starting loosing weight, passing blood and developed severe diarrhoea. The main symptoms that occur if someone with coeliac eats gluten. His small bowel biopsy was a terrifying ordeal to me, my husband had to go to work, my daughter to school and there I was, alone with my boy in Yorkhill children’s Hospital in Glasgow, with only the two of our frightened souls to make it through the night.

I had read that undiagnosed Coeliac disease can lead to bowel cancer. Processing that information, physically took the air out of my lungs and left me feeling like a ghost, with nothing but prayers and bargaining with god like never before.  After the biopsy, the surgeon visited us at his bed side and instructed us, sternly, to follow a strict gluten free diet straight away as there was much noticed bowel cell atrophy during surgery. Thankfully, my fears of cancer were quashed.  However, please let me further underline, my son has still not come to terms with having coeliac disease.  He can follow his insulin pump treatment, and test his blood sugars up to ten times daily, and count every carbohydrate to match his insulin requirements, and treat severe hypoglycaemia with my help (which could kill him) but he has not made peace with the fact that he is limited to what he can eat, where he can eat, and very frequently (now that he is almost a teen) cannot follow his friends to places of convenience.

PRESCRIPTIONS

Each month, on prescription, due to his age, we are allowed 15 units of Gluten free items. This is restricted to bread, pasta, flour mixes, pizza bases and crackers.  The bread counts for 8 units, the flour mixes 2 units.  So roughly, each month we order bread, 1 box of flour mix 500g – which makes about two batches of scones, or pancakes, the pasta counts for about two dinners also.  So there you go, he gets two dinners, two pizza bases and whatever bakery items I make.  On top of this, I buy other gluten free flour from Doves farm to supplement my cooking needs to feed him, and my family. I buy him cereal, I buy him biscuits and the rest of my shop goes on buying things to make from scratch. We don’t buy ready meals at £1. We can’t buy frozen pizza at a cost of £1 – all of the frozen gluten free pizza’s are more expensive also – averaging about £3.50.  If we eat out, which is rare, restaurants very frequently charge more for gluten free options.  Therefore, him having a disease, which was not his fault, does cost us! It keeps him safe from harm, but it costs us.

If he ate gluten:

So let me just reiterate this, he would be ill.  This is a disease.  It can cause bowel cancer.  Is the NHS not for people with illness now? Why have an NHS? Oops, did I let the cat out the bag there?  Is there long term plans for the NHS and it’s future? I think we would be naive as a nation to not know this.

In line with the Autoimmune nature of his disease, are other patients with other autoimmune conditions branded as using up NHS budgets?  Are headlines publishing how much their treatment is costing the NHS? What about patients with MS, or Rheumatoid Arthritis, or even Autoimmune Kidney disease, do these diseases make frontline news?  The recent media outcry has now insinuated that people with Coeliac Disease do not deserve cakes or donuts on prescription.

NEVER IN THE 4 YEARS SINCE MY SON’S DIAGNOSIS HAVE WE HAD CAKES, OR DONUTS!

These lies, have been published to alienate us, to provide society with misinformation, and build myths to create anger towards us. If he doesn’t follow a gluten free diet, he runs a higher risk of bowel cancer – will the NHS then accuse us of using resources for that, and just think, how much would his cancer treatment cost?

I often find that when the media brings out malicious and defamatory information, that I question where the lead has come from?  I ask this of my health minister in Scotland, Shona Robinson, and I ask for her support to highlight now to the media – as a means of retraction, that we are not enjoying cakes and donuts free on prescription.  Indeed, our counterparts in England, do not receive free prescriptions, and in some areas, clinical decisions mean that some people do not have the same formulary as other counties, and are struggling to get basic staple items on their prescription in the first place.

This move, by the Daily Mail and BBC Breakfast (showing an interview tease of cakes on 18 August 2015) is discriminatory.  Chief Executive of Coeliac UK, Sarah Sleet, supported the members by explaining the prescriptions are only for staple items, but with images of cakes being shown, this visual portrayal of lies, still builds widespread, societal ignorance and mythology.  However, Ms Sleet did point out that the figures published were not fact! Spending on Gluten free prescriptions, for staple items, comes to £26.8M not £116M as published – a slight change there then? this is shown also, in the letter by Coeliac UK’s Chief executing addressed to the Daily Mail!  Has the newspaper provided a retraction since then? Has there been a re-print? A public apology?

Meanwhile, my son is not obese, he does not live on cakes, he has a healthy diet – which allows him to have treats now and again like any other child, in fact, eating healthier that many of his peers who travel to take away shops for lunches everyday at school – of which he cannot eat because they all contain gluten.  He likes to attend his local skatepark, for leisure. He cannot eat the food there either, so I find myself being an outside caterer with small tubs of rice and chicken, or rice noodles with veg and meat, or perhaps I’ll make him a gluten free sandwich with chosen fillings. Nevertheless, he does not eat the pizza’s and hotdogs that all of his counterparts seem to enjoy everyday.

By following his diet, and eating well – isn’t he doing the right thing? I ask you, walk past children at a local softplay, a leisure centre, school on lunch breaks and have a look at what they are eating?  Notably, there will be some children who make healthy decisions, but the majority will not be. Children’s menu’s up and down the country are likely to include chicken nuggets (fried or coated in gluten), burgers (gluten in the bun, and the meat), chips (gluten in the chips or the oil),  oh and the delightful Mac & Cheese (yip, you guessed it – gluten in the pasta).  So, yes, I do take it as a personal attack that these media items have portrayed my son to be fat and stuffing cakes and donuts (on some imaginary prescription letter) down his throat!  Here are my children, on holiday.   Despite his love for the Nike store, I think you will agree there is no obesity pictured here. You may look and see they both look very healthy.  This is the problem with society today. We are a visual race.  We enjoy pictures, instagram, snapchat, twitter, flicker and everything else in between. Some disability is not seen.  But show pictures of cakes and donuts next to a headline – inflaming the nation with lies, and deorrgatory statements and suddenly you have my son’s healthy under scrutiny. He protects his health, because we realise he NEEDS to. How many of you, out there have the same self-protective attitude towards your health, in honesty? Can you say, you calculate carbs everyday, can you say you stick to a diet? He has had NO CHOICE from a very young age, and will need to for the rest of his days. Yes, I am defensive. The media have opened the gates, fed the nation a bunch of lies and I am outraged.

kidsinfrance

Also, the Telegraph, published an article which outrages many, including myself with a direct quote from a “spokesman” from the Department for Health – who is this “spokesman”?  apparently, he thinks the NHS was founded to prescribe cakes and biscuits.  Had this spokesman done research, he would find, that we have never had such items prescribed. however, a small apology has been mentioned on their website for getting their figures wrong! Did you notice I said small?Small font size, in italics, on the bottom of an article, as a footnote.

One point, I wish to highlight is the price and nutritional content of gluten free food. Stop by your local supermarket aisle today, check out the extortionate prices of the cereals, the biscuits, the snacks, cakes in the gluten free section, and have a look at the amount of fat and sugar that has been added.  We were told, by an NHS dietitian, that yes unfortunately they take out gluten – but then they add more fat or sugar – or both!  So whilst we are told to protect his insides from gluten, we now have to make a decision based on how much fat or sugar he eats too.

I spend more hours in the kitchen baking,and preparing healthy homemade meals (because ready meals mostly all contain gluten), I send him to school with a packed lunch – carefully carb counted and nutritionally balanced, and all to save his small bowel from destruction from antibodies, and the risk of small bowel cancer.  Should I have to defend this?  Seems so, when the media want to single us out. How dare ill people, with genuine disease, use up NHS money!  Watch out folks, if you have an autoimmune condition, the media could be onto you next.

I’d love to finish on a positive note. I really would. However,  I woke up this morning, trying to avoid the media like a hermit.  I done some yoga, made breakfast for my family, made packed lunches for everyone, and put on the radio.  Only to hear on the news that E-cigarettes may now be available on prescription!  Isn’t smoking a personal choice?  Sorry, isn’t it a person’s choice to smoke?  Not sure where in my son’s little life did he CHOSE TO HAVE TWO AUTOIMMUNE CONDITIONS WHICH COULD KILL HIM. We wouldn’t need prescritions if he wasn’t ill.

As a small side note, there have many nods in the direction of the increases in prevalence of diagnosis of coeliac disease and perhaps the amount of pesticide sprayed on crops, and GM crops.  Just saying, as a side note, and in small font size, and italics!

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SansGluten? Mais oui!

2015-06-21 13.01.14-1Sorry for the lack of updates folks, we’ve been in the Cote! This is what locals call it, and since we were there for two weeks, I’m now considering myself as one.

Coeliac disease and trips to France bring about a whole new level of event management.  If you have travelled there, you will now where I’m coming from.  I thought I had the pronunciation of “Mon Fils avais un maladie de coeliaque”  – until I realised I’ve probably just said he had a disease, rather than he has!  And this sums up my failings in French. I can pick out verbs and nouns from my previous school years (ahem, a few years ago now), but stringing it all together into perfect tenses, and participles is another matter.  So I’ll stick to biomedical science now.

Without making too much light of this, it was extremely difficult to eat there, unaware if we were being paid “lip-service” by chef’s and waiters, and waiting to see if our son reacted in anyway to possible hidden traces of gluten.

I had browsed many blogs and websites before travelling to Nice and Cannes, and many results failed at the first hurdle.  Still, I wanted to try and take on a challenge with my son, to help him see there are ways and means.

These include, researching where the nearest supermarkets were – and if they stocked gluten free (sans gluten), booking self catering accommodation in order to make as many of our own meals as we could. Packing as much gluten free food as we could, and learning basics french.  But to give you an idea of the impact of Coeliac disease, here’s a little story that you might find interesting.  When first diagnosed, and for quite a while afterwards, my son was literally frightened to touch any surface that may have come into contact with gluten.  At age 8, and having had severe pain and weight loss, nevermind the experience of having a biopsy, he tried to cope with his fears by avoiding lots of places. Including opening car doors, which others had touched – because they had just ate a sandwich!  There are other occasions that I won’t mention, but it took us a lot of hard work to encourage him that he would not experience pain unless he ate gluten.  Fast forward a few years, a school trip on a residential break (I went with as a volunteer), he panicked when his class mates started throwing toast around at breakfast time, resulting in crumbs all over his food and his freshly squeezed orange juice! Staff, and teachers showed nothing but disdain for my son’s panic, and exclaimed that he was making a fuss about nothing! (super-hero mummy to rescue with that one – and I got no medal for being the most diplomatic person in the room). Being that he also has type 1 diabetes, it is quite important for him to gain substantial long lasting carbs at times where we are planning long hours of exercise, so we like to ensure he has adequate nutrition. Wait!  But doesn’t every child? My point exactly.  The amount of times he has felt excluded from society because of Coeliac disease is countless, so we try to make the good times happen as frequently as possible (note to self, next blog to discuss failing to maintain a healthy bank balance every month).  He is maturing, at quite a fast pace it has to be said, but with a sad understanding that there may be many occasions where he just can’t eat.  Friends tottering off to Subway for example, friends birthday parties (will he take a packed lunch now that’s he nearly 13?) and holidays to France?  But here’s the secret gem I was hiding, deep within my blog (mysterieux, non?).  Choopy’s.  Yes.  Choopy’s is in Antibes. It is cupcake heaven for us avec coeliaques. 

gluten free cupcakes, in Antibes

gluten free cupcakes, in Antibes

It’s a local cafe, ran and managed by a french lady who has coeliac.  The kitchen is 100% sans gluten, the cupcakes, cakes, sandwiches, bagels, baguettes, wraps, smoothies are all healthy gluten free alternatives.  I don’t care if this is blatant marketing, I get no fee for this.  The place is wonderful.  C’est delicieux! When we arrived there were lots of tourists there, and with a huge map on the wall with pins  – we got to see where people have travelled from to visit.  My son felt a range of emotions, all of which I see in his eyes without him speaking a word. Relief, joy, happiness, relaxation and delight.  2015-06-27 14.52.092015-06-21 20.45.01

Secondly, there was a creperie in Nice (Debin Ur Begad), in the old town which offered gluten free crepes.  Thankfully! You have no idea, just how many restaurants we had to avoid, so to find two which we could visit, and feel safe seemed like heaven to be honest!

Just take a moment to think of all the places you can eat, in your local town, if you are out and about and feel hungry – where do you go? Do you buy a quick sandwich (is there a gluten free option there?)  Do you head for Greggs the bakers (Do they offer anything for people living with Coeliac? – apart from a piece of fruit?)  What about Marks & Spencers?  Do you see how many sandwiches they offer – oops, wait, you’re right there is that one option which is gluten free isn’t there.  That’ll be the egg option! You guessed it, my son doesn’t like egg sandwiches. Actually, I don’t know who does?  (that one is open for discussion if you are really bored today).

You’ll quickly realise, just how much food matters to your life when it suddenly becomes restrictive – and more so for a child.  The social impact is huge and one which society doesn’t need to think about, until it comes across it.  However, things are improving, all the time – just yesterday I read of research at the University of Alberta, where a study is underway to prevent gliadin from causing gut damage. Not sure what the coeliac community feel about this option, if they feel delayed gut damage would still occur, however at least research is trying to help us all! Discuss??  Coeliac Uk have an annual research conference, which you can read about here also, if you feel you would like more details on current research topics. 

We do feel perturbed when we read how amazing Italy is for gluten free food, and the search will continue for the next holiday. However, since it was so expensive in La Sud de France, that won’t be happening this millennium.