Science, Music & type 1 diabetes – my life as his mum

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


Let’s talk – Type 1 and music

My son John has had type 1 diabetes since age 4  – he’s now 15.

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I noticed recently on the JDRF twitter feed about #NationalConversationWeek. This got me thinking about Stephen Hawking’s voice in the Pink Floyd song – Keep talking. The hope that he brought to millions of not only defying all odds, against diagnosis and prognosis, but of his positive visions for the universe and humanity. In this quote, I take personal hope that we need to “keep talking” (about a cure for type 1 diabetes):

If human life were long enough to find the ultimate theory, everything would have been solved by previous generations…Stephen Hawking. 


Banting & MacLeod

Let’s talk about this – they helped to treat dying children with insulin, previously harvested from animal pancreatic supplies. These two prominent, hard working scientists worked endlessly on their mission to save lives. They were true pioneers.  If  they had not been so dedicated and focused, these children would have died.

Fast forward nearly 100 years and this insulin now saves billions of lives.  Their breakthrough with this life saving drug was, none more than a miracle, in my opinion.

Does it make you think why then? Why did they find those answers at that point in time? And what are the new age revelations for our generation and that of our children?

As a flipside, it’s not all plain sailing –  what about the side effects of insulin treatment  – what about the realization now that intensive insulin replacement treatment can cause severe hypo’s at any time, bringing severe risk to our lives and that of our children.  What about the toxicity of insulin?  Bringing me to The Verve – The drugs don’t work.  I understand insulin works, in that it can lower blood glucose – rather than regulate it.

How to help make life better/ easier?  Radiohead – Fitter/Happier

The impact of technology now seems to be highly fashionable in the quest for monitoring and preventing side effects of insulin replacement.  From glucose monitors to phone apps and constant alarms and interaction with data. Turning some of us parents into mini data scientists and predictive glucose trend setters – just look at the growing population of NightScout users and developers – using Open access to view glucose trends in the cloud, and view data on wearable devices – to constantly interact with dose adjustment of this drug.  I can hardly avoid mentioning Red Hot Chilli Peppers –  Blood Sugar sex Magik here can I?



I recently submitted my first draft of my Masters thesis on the topic of technology and type 1 diabetes, and I hope to continue my path of being a parent of child with type 1 and a researcher, with enough sleep and sanity and insight to be able to help those who need it most.  But a lot of the time, I push against feelings of tiredness, helplessness at not being able to fix my child and forging ahead with a sense of hope and strength. I don’t know where it comes from to be honest because sometimes this shit gets so difficult.  In quiet moments, in the car, or at the beach this song talks to me – First Aid Kit – Shattered & Hollow

Something inside of me this morning feels like a wounded animal, having opened my son’s bedroom door at 7am to find a trail of empty cans of full sugar coke cans on his floor, and him unable to waken from tiredness  – having treated a hypo in the wee hours. Why didn’t he waken me? Is he too tired for school this morning?  Should I let him sleep a bit longer – knowing fine well that in a year or two he’ll have left school and will be expected to drag himself out of bed, shattered and feeling like crap – to get to work or college or university!  I should have been there for him last night, I should have woke up and treated his hypo, like I have for the most hypo’s in the last 11 years.  Insert here – Fleet Foxes – If you need to, Keep time on me & Opeth – Burden. Two songs for the price of one here folks! 

The mind plays wonderful tricks on us to keep us in fear of these hypo’s , these times when our growing, teenage children will venture into the world without us (that reminds me, should I order him some Medical ID bracelet, that I know he won’t wear).

Sadly, after such a long time dealing with my son’s condition, I have created habitual thoughts of fear.  Fear of him feeling the burden now that I softly hand this over, bit by bit.  Fear that people will judge him – what if he’s on a train one day, having a hypo and people think he’s drunk.  Will they help him?  Fear of him being sacked from a job because he can’t deal with the tiredness.  Should I bring in a classic oldie here – Blue Oyster Cult – Don’t fear the reaper!

In order to get society to understand the relentlessness and tiring effect of managing type 1 and glucose levels everyday, it seems that we need continued press coverage to rise about the loud voice of mythology – “Diabetes and obesity on the rise” etc – this voice that has filled with nation with a belief that our children with type 1 diabetes had any hand to play in their diagnosis.  It’s widely known in the diabetes community that type 1 diabetes is autoimmune, and cannot be prevented – but let’s talk about it on the street.  Let’s see how many people know the difference?

I took my son to a chiropractor recently who felt she could manipulate his spine to help with his headaches, and back pain. When I explained he was type 1 – she said “That’s ok, isn’t it the other one that’s worse anyway?”  My heart sank.

When I called a local boxing club for my son to join, the man said “his diabetes won’t be affected madam, he’ll be fine.  He’ll be punching a lot for the first few weeks so he’ll be just fine”… Again, that sinking feeling.

If only we didn’t need other people to understand, but we do.  We have to have our children integrated into society. A society which doesn’t really know how to help or understand what the heck is going on. I believe a lot of this is to do with the damage done by the media over such a long period of time.  Presenters who never distinguish between type 1 “diabetes and type 2 “diabetes” when all they ever use in their language is the word “diabetes”. A blanket expression.  For this reason, and many others associated with the plethora of injections we give our children (and the fact that he is also type 1) I nominated The needle and the damage done – Neil Young as my next song.

As I finish this little ditty, I reach out to all the other parents/caregivers who wake in the middle of the night, or who stand at the sides waiting with sugar (candy) in hand – just in case there’s a big, bad, hypo awaiting.  I literally cannot listen to this song anymore without crumbling.

Candy – Paolo Nutini  

“Oh, darling I’ll kiss your eyes
And lay you down on your rug
Just give me some candy
After my heart”

Do you have a song or a memory like this? Share with me. I look forward to hearing from other parents who cry at songs, who have quiet moments of contemplation with songs, and who secretly enjoy their child’s fascination with rap (that’s me).


To my son John “I let my tape rock , ’til my tape popped”. 




To sleep or not?

We’ve hit puberty big style! The insulin dosages creep up and up, the midnight feasts, bolusing for every snack that’s grazed upon. The tip-toeing into the kitchen at all hours to eat even more bags of crisps. Yes, it’s the bottomless, empty leg syndrome of a growing lad. I’m happy about that, don’t misunderstand me. I’d like to share my opinion on some management issues for this style of living with type 1 diabetes and coeliac in adolescence:


1 To collaborate with my growing lad and discuss openly that he has to live his life to the choices he is beginning to make. Supporting him and guiding him through this life with love, patience and a very good sense of humour. Most of the time this how we live.

2 To accept sleep will be broken for the next few years at least. Very rarely we have a smooth ride at bedtime, but it’s been like this since day dot with this condition.

3 Dealing with Fear of hypos:

Since his seizure, I wake most nights to check his blood sugars, I test them several times between 10pm and morning, just to make sure he is safe from harm. This happens when you almost lose your child because of the treatment that keeps them alive. I won’t dance around the seizure issue. His sister, pictured above, and I both have regular nightmares about it – even though it happened a year ago now. We have to talk about this because these are real, daily fears we have.  Unless we could have technology that gives seamless, useable and comfortable protection against hypoglycaemia  – these daily issues will be continue to be with us.

For example, just two nights ago he had a severe hypo in his bed at 10pm following a nice hot shower. Only half and hour before that his bloods were in a good place. You form a sense of trust that the blood glucose is playing nice, only to find half an hour later you were wrong. This frustration and worry is always with me as a parent. Even now, I know that logically I shouldn’t feel blame that I get things wrong, but how on earth could I not have predicted that one? Surely I should have guessed that the heat from the shower was going to be too much for him?

Anyway, since Lucozade have now changed their sugar content, and this is how he likes to treat a low blood sugar, he had to drink almost the full bottle to begin to feel normal again. For the shaking to stop.  This led to him feeling very sick. I sat with him til midnight. Testing his blood glucose at regular intervals. To which end, his fingers were sore and he continued to feel low.  Thinking we now need to look into stopping purchasing Lucozade and try different hypo treatments – I wonder how many other of the millions of people with diabetes are turning to other measures to treat low’s – please discuss folks? I would love to hear your ideas on this one.

The pump is great for introducing reduced basal rates when this occurs but basal changes can take up to 2 hours to have effect. Anyway this was the option I felt was best for that time of night. Roll on two hours, 2am and I felt in a panic that he had overtreated his hypo and blood glucose may have risen too much. I woke in a panic, with my heart rate racing. His bloods were at 12.1mmol/L.  I left him til morning. 6:30am, and they were still at 12.7mmol/L.  I should have corrected that one, but following a hypo one can never predict the glucose patterns.   Can technology help us with all of this? Is there a panacea out there for these issues, these worries. Or will the functionality always need to include sleep disturbing alarms and vibrations.

I dropped him at school the next day, with a tired look on his face. As I have done so many times. There have been times when he hasn’t made it into school due to the tiredness, but usually we get through.

I’d love for people to understand just how exhausting this is, and the effects of that on our whole family. With him reaching nearly 15 years old now, and having lived with this since age 4, it can start to feel like a bad version of the film Groundhog Day.

I try hard each day to be grateful for him, grateful for life and happy that we have insulin as many around the world don’t have the same level of access to this life saving treatment. But oh my, just let me have peace of mind for one night!


Diet and Lifestyle

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Gluten Free pancakes in France

I’m thinking there used to be a school of thought whereby people who lived with type 1 diabetes felt restricted as a child when they ate at times, depending on influences from parental and clinical involvement. Thankfully now with the insulin pump, my son doesn’t always have these restrictions on when he can eat – apart from when he is hypo.

Scenario 1

Hypo: body needs sugar – fast! Let’s get the orange lucozade (his choice). Imagine you had just ordered a nice meal in a fancy restaurant, and you have to treat the hypo first. This is because they body needs fast acting glucose for at least 10-15minutes before you eat.

So in this instance, there can still be an element of restriction. Would he even feel like eating the meal after a hypo? who knows.

The thing is, it is not always possible to predict a hypo is it folks?

Scenario 2

Hyper: body needs more insulin. He feels so ill. Headache, sick. Again, you wouldn’t want to have ordered a nice meal would you?

The micro management of the insulin doses in life become so that you try to predict and prevent these swings in blood glucose levels. However, is it always possible? Swings in blood glucose levels can also be caused by stress, illness, growth, forgetting to bolus.  The trials!

After all is said and done, I’m so proud of how he is navigating this foreign landscape and taking on board a collaborative relationship with me. Allowing me to support him when he just can’t deal with it. Taking the reigns when he wants and wonderfully guessing carb counts daily.

I’ve cared for him since age 4, and some days I miss the little feet, the little hand holding mine. But when he towers above me, and tells me he loves me that’s all I need.

Sleep will just need to wait!


Those long legs, walking a friend’s dog on the beach!

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Teenagers, Trials and Tenacity

It’s been a while since I’ve posted so here’s an update!

I remember folk from years ago telling me that teenage years for a child living with type 1 diabetes were great fun. Satire at it’s best. Noted.

He is almost 14 years old. It’s been nearly 10 years since his pancreas exclaimed “nah, can’t be bothered” (said Kevin).

I’m here now. In the midst of it all. Puberty. Hormones and the lack of. It’s nothing short of living within confines of the extreme limits of human patience combined with the strangest art form – which I can only relate to as some sort of pseudo-psychic mind games.  Does Derren Brown have an answer to this paradigm shift in behavior,and the management of? This phenomenon known as teenage manhood?  Or is that just me being a nagging mother?  To talk or not to talk? Chapping on bedroom doors to get shouted at “don’t come in!”  etc,etc.

We have limited blood glucose testing at the moment, with the associated snorts and groans of what resembles a British Saddleback.  There’s the refusal to change the insulin pump cannula on day 3, resulting in bedtime (and through the night) hyperglycaemia reaching steady heights of >24mmol/L with various correction regimes. We have the non-compliance to remembering how to operate the messaging services on iPhones – known as “text”.  Furthermore, the Instagram and Facebook messengers have now been denied access. Next on the list is his refusal to answer the telephone when it rings. It’s funny, and enjoyable folks. I love it.

Clinical measurement

Hba1C used to be something I had some sort of limited control over, with regular input to his care and management. But these days, I’m lucky if I’m allowed to touch him to prick a finger. So there goes that as a reliable measurement. Other parameters to measure who a teenage is living and coping with type 1: refer back to the pseudo-psychic mind games statement.

Why do we still seek answers?

With all this in mind, I thought it would now be interesting, and slightly ironic, to introduce you to my next career change. I have completed the BSc (hons) Biomedical Science successfully,  and now plan to embark on a life changing masters course. This will be research based – looking at the application of technology to treat type 1 diabetes in paediatrics. I’m hoping the course will allow me insight into the hidden world of where the answers lie. Like some strange landscape on a (not yet discovered) planet, in some far off nebulae, where the cast of Hitchhikers Guide to the Galaxy are all sat around a table, looking at graphs with nice straight lines. Or, I could just wait for the artificial pancreas to be MHRA approved?

Yes, I am sleep deprived.

It’s not all bad folks, sometimes he laughs at my jokes. This usually happens around December time.

Thanks for reading!2015-04-16 10.26.19


It’s the final countdown

Did you sing it? …Air guitar!

Tonight, I wanted to jot down some feelings about my final exam coming up, as part of my BSc (Hons) Biomedical Science degree at the wonderful University of the West of Scotland in Paisley. Has anyone ever felt the impending crisis of confidence that comes with this finality? tripping up at the last post? falling at the last hurdle ? and all other steeplechase adages. Can I say? This is partly me. The other part of me wants to be the person who tries their hardest right til the end, like “when the going gets tough..” You may be thinking enough of the proverbs, if so, I don’t blame you.

It’s the pressure I’m under you see. Right at the end of this degree I have the whole plethora of reasons which I’ve built up over the years ,to keep on going. The memories of the stresses and strains it has put on me and my family. The lack of sleep due to many reasons and the blind faith that I would keep pushing myself to get there.  I’m almost at “There” now, or am I?

As a part-time student, I have met so many wonderful people who have inspired me. I’ve met a lot of friends who share my passion for being a science girl/nerd/geek/weirdo/guru. On the whole,  I can use the word “privileged” for how I feel about this change. Anyone, who undergoes a career change may feel trepidation at the prospect, but I can confirm the change has been good for me – so go for it! If it’s something you need to do in life, I hope you get the chance to.

Biomedical Science and this career change is always a moving target. One which never really came into focus before now. You see it’s not until the end of honours year that you start to really take things seriously, how could you before? you didn’t know you would get this far, right?  I mainly speak for myself here.


You begin to meet people, who you may actually be involved with throughout your career.  For example, recently, we’ve had the pleasure of hearing how it is in industry with a series of talks from scientists working in labs in Scotland.  They have discussed the focus of their specialisms in laboratory diagnostics or research – highlighting the impact they have on lives at the other end, perhaps vulnerable and waiting on results.  Their responsibilities at hand of keeping systems in flow, and performing accurately to meet demands of ongoing developments and tests in Biomedical science.  A recent lecture from a clinical immunologist on the range of allergy testing that can be carried out nowadays inspired me.  One talk discussed the ways of testing for allergies including skin prick tests, measuring wheals as they responded to localised allergens under the skin, and also the movement towards molecular genetics such as the awareness of the ‘Ara’ gene’s in peanuts and their related allergens that can be detected with antibody testing. It almost ranked #1 in lectures, however this spot is reserved for Dr Anne Crilly’s lecture on autoimmunity. Dr Crilly was my research project supervisor, so I do have vested interest in being a fan!  I feel inspired by great minds who tackle very complex scientific challenges to improve people’s lives, and I hope student’s voice their appreciation of this which I know a few of my peers do.

Clinical immunology is where I aim to be involved, but as I learn about the scientific community and the specialisms out there, I realise, if I achieve my BSc (Hons) that I’ll be a beginner again and rightly so. For this reason, saying that  I’m almost “There” now seems a very sinuous comment to make in this industry.

Diabetes Research

In the days gone by, whence I was young and naive (not really, I was 32 when I started this degree) I thought I would qualify and go straight into diabetes research. As a mother of a child with type 1 diabetes, I was sure this was all the gumption I needed. <insert evil laugh here>.

I know differently now. Those little acronyms, of which I have learned so many, are now staring me brightly between the eyes most days. PhD being the one of most illumination. However, as mentioned (quite a few times now) on this blog, I do have a family. I do have growing teenage troops and they do need parenting as much as little babies do.  Side note: If you have teens, you will know what I mean.

Inevitably, I will try to make a confident decision and move forward with my career, but I wouldn’t have been in this position if it wasn’t for my quest to find out why my son was diagnosed with autoimmune conditions. Each time things got difficult I told myself “if someone else can do it, I can too”.  This quote is dedicated to my children.

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John, my snowboarding genius!

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Katie, my young aspiring musician, and teacher!

To Katie & John:

If you read this (meaning you may have to actually use your mobile phones, and now my argument for this seems ineffective) – Thank you for putting up with me, and having faith in me so far. In this day, when you live with your mobile phones joined to your hands and google anything you want to know, I want to highlight that being part of studying for a degree is great but you’re in it for the long haul and you have to be patient with yourself.  Good things come to those who wait.


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IBMS Congress from a student perspective

2015-09-28 13.30.33Yesterday, I traveled down south from Glasgow to Birmingham, for the IBMS congress at the ICC.  On my part, this was a mixture of career planning, travel enthusiasm and escapism if I’m honest (who let mum loose?).  Who doesn’t like day trips? (insert Beatles song here).

Also, I want to be proactive about my career. It’s a great combo!  Since the flight was cheaper than travelling to Edinburgh for the day, I thought why not? I was eager to meet people who are passionate about biomedical science from other walks of life.


On arrival, I found Birmingham looked like an up and coming city. I felt full of  “spring” in my step! The newly opened New street station was certainly worth my visit, if all else failed.  However, I was full of purpose, so didn’t hang around much to be honest – heading straight for the ICC on a mission.   2015-09-28 13.22.55I had expectations of chatting with scientists, and professionals on current treatment options/diagnostics and you guessed it… all with a bias towards autoimmune conditions. So where was Medtronic?

Students of Biomedical Science unite!

The student expo, as aimed at undergraduates wondering where this ‘broad-ranged‘ degree will take them.  Sarah May, Deputy Chief Executive of the institute highlighted the routes into working for the NHS and options which may be available to a new graduate – more often than not – a laboratory support role.  These jobs are marketed at pay band Grade 3 (NHS grading)  for those without any qualifications, which may seem like you’ve hit disaster after 4 years of hard slog, and brain-bashing theory to gain a piece of paper, which you didn’t need to begin with! Don’t be disheartened was the message, students with the BSc(hons) degree can progress from these roles within the NHS, and aim to specialise in a chosen niche – look at it, as a step in the door.  For those who wish to be at the forefront of diagnostics, and feel the support of the largest employer of BMS behind you, then I feel this could be a great career.  Also, a wonderfully, inspiring talk presented by Sgt Colin Hudson of the Royal Air Force left me feeling amazed at the capabilities of scientists in the most difficult of places and circumstances a person could ever be asked to face.  This also made me feel a little sad, because my son can never apply to the forces due to his medical condition, but it is good to know there are strong minded, focused and extremely capable scientists meeting the needs of those at the face of human crisis on our planet.

I personally was very interested in the talk by Dr Sue Jones, from York St John’s university.  I am not a young undergraduate, and have come to biomedical science as a second career. Therefore, I have strong determination and deep personal reasons for being interested in completing this degree. I carry with me experience of treating a child with a severe life threatening medical condition, and this gives me a double-sided view of why research is vital, why it is important to network and sell products that vastly improve patient’s lives.  I am that customer.  Which leads me onto the exhibition.

Exhibition hall and the big names in industry including Leica, Abbott, Siemens and the list goes on…

At break, we ventured into the massive exhibition hall to wonder at the latest and greatest of diagnostic equipment, laboratory aides and tools.  I chatted with a few exhibitors about my student experience so far and well wishes all round were exchanged.  I personally felt like a child in a sweetie shop – literally, due to the fact every stand was happy to supply everyone with a quick sugar rush. Ironic? … discuss.

From a student perspective, I felt the career aspect of the expo was vital to anyone who has not thought about the different routes to follow after the undergraduate degree.  I got chatting to a few students from universities in England, about the differences in their degree programme and mine, but one thing remained the same, these degrees are very popular in the UK. There is widespread competition and we all need to aim for more experience in the lab if we want to stand out from the crowd.  If it is financially viable, to gain lab experience at your university or research institute, then keep trying – I know I found my summer work experience invaluable.

Finally … let’s not avoid the elephant in the room any longer – Earning potentional!

There is an element of “but when will I get paid?”,” When will I earn from this degree?” and I admit, I have thought that quite often. I do have two children and a mortgage and without my husband’s career things would be very different for our family. Nonetheless,  I try to hold onto the dream and hope I had at the start of this route for a specific reason, and that was to help make my son’s life easier, to understand the mechanisms behind his wonky immune system, and to try and work alongside researchers who also feel as passionate about that as me.  Currently, I have no delusions about earning the best wage.  I know that applying for funding for a PhD is highly competitive.  As is, finding that job that makes all this seem worthwhile. Basically, I have admired a certain researcher for the past few years who works at Massachusetts general hospital in Boston, USA – so quite a far travel for someone from Ayrshire, Scotland. It does all seem like a pipe dream to me, but not one I am willing to give up on just yet.  For those who wish to enter the NHS, there is also the delayed potential to earn a band 6 wage – which could take quite a few years post-graduation.  In summary, why should we not go for sales jobs? I’ll leave that to you to answer, It is a very personal answer – but please feel free to share your own experiences.

When you walk around the exhibitors hall, it can be quite an eye opener to see the ones who make money from biomedical science. But if you are passionate about the subject, it could be you who helps to write the rule book, who aids the invention of the next immunoassay or who writes a paper leading to the improvement of millions of lives.  We certainly wouldn’t be living with some of the best technology for managing type 1 diabetes without some of the best research and pharmaceutical involvement in the world. medtronic-cgm

So without coming across as a cheesy motivational speaker, I would like to finish up by saying, it would have been wonderful to be able to sign up to attend a talk listed on the plenary. If this was an option (I’m not sure if it was), I would have loved to hear the talk by Dr Claire Guest – CEO of Medical Detection Dogs (I know of a family who have a dog that responds to a child with hypo-unawareness – a life saving dog!).

My aim was to explore where my career would go, but I still leave that open. Open to chance meetings.  Open to networking. Open to fate perhaps, and certainly open to more day trips and conferences.

Please feel free to comment, and share!  I hope my post inspires others to attend conferences, and get meeting others in the field.


Gluten Free on Prescription – our truth, our lives!


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.


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.


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.


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.