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

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

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Gluten Free – Fad?

its gluten freeLot’s of people have asked me, “what happens to John if he eats gluten?”  or “is it just a faddy diet?”  Now, you can see the error in asking a Biomedical Science student this question, and hoping to get a short response!  I’ve dumbed it down a few times for the sake of sheer compassion and geniality. But at times, I really feel like going full force at people. Why?  Because I am quite annoyed with the gluten infested world we live in at times, and the general attitude that it is not a serious condition.  This may be true when compared with other food related conditions such as allergies and intolerances, but the fact still remains that this autoimmune condition causes tissue inflammation, villous atrophy and the associated sequelae of malabsorption in the undiagnosed patient.  Before diagnosis, my son (then aged 8) was experiencing excruciating abdominal cramps most evenings; diarrhoea; steatorrhoea; rectal bleeding; fluctuation blood glucose results; fatigue and a plethora of mood swings alongside raised HbA1c results.  Now, I  know this is not life threatening, but he already was facing Type 1 Diabetes everyday which is life threatening, and we were about to be hit with a double whammy!  Telling people that he “gets an upset tummy” really doesn’t do this justice, but would you be happy to tell the local checkout girl at Tesco that your son has a vast array of autoantibodies creating war on the villi of his intestines, possibly leading to widespread tissue atrophy?

coeliac, jejunum

coeliac, jejunum

From a diagnosis point of view, blood tests were ran at our local Paediatric Diabetes and Endocrinology clinic at Crosshouse hospital in Ayrshire, and I got a phonecall 6 weeks later (whilst in a genetics lecture would you believe?) to say his results were conclusive of high titres of autoantibodies.  The next step for diagnosis would be a biopsy at Yorkhill Children’s Hospital  in Glasgow, and until that time he was to remain eating a normal diet containing the very proteins that were causing all of this pain.  so, you can see that this process took about nearly three months.  Whilst a child is in pain, this is not conducive to a happy family life at all.  But, we should be grateful because there are others whom wait years and years to be diagnosed with Coeliac disease.

On awakening from his anaesthesia, the consultant came to the ward to tell me he should begin a gluten free diet straight away!  So there we have it, the patient perspective of how these HLA DQ gene’s play themselves out in real life. And on our gluten free journey we continue.

A few interesting links on coeliac diseases can be found below:

Coeliac Disease from a histopathological approach :

The effects of gluten free diet on glucose control for those with diabetes :

coeliac ukCoeliac Uk, the leading charity for those living with the condition. – a new provider of healthy, gluten free ready meals for those who cannot spend every day slogging over a hot stove!  – a well known provider of free prescription food – a brand which can be found in most supermarkets. – an amazing online ordering company, who make Tiger bread, and doughnuts, and goodies (Oooh hungry?) – a fellow blogger, in the Plymouth area of the UK!


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Cannula Can of worms?

Ok, maybe worms is not the best expression here, but often worries build up and get squashed around our, already slightly anxious minds like little worms.  Looking back, I think this is fair to say of the way my son was dealing with starting insulin pump therapy.  He was already dealing well with seven pen injections per day, and had no fear of needles.  Well why bother with the pump you might ask?  Easy answer is, even though I thought I’d became familiar with the daily task of injecting my son, at some level, it still was unpleasant to have to inject my child every time he wanted to eat.  Despite daily carb counting and keeping him fit, he still wasn’t having great HbA1c results – mainly due to his coeliac diagnosis in my opinion!

cannulaDuring this period, I was studying Medical Microbiology at University and the thoughts of Staphylococcus aureus infections started to come to the table.  Each time, we done a cannula site change, my mind was filled with the virulence factors of such, skin commensal bacteria, and how it could pose as a threat to my child every time we introduced this cannula.  I have been studying Biomedical Science, part-time for seven years now, and in that time I had to take one day off.  Why?  That would be a failed cannula at 2am the previous morning, with blood sugar levels at 24.1 mmols   So here we have, a practical, real life example of how bacteria and immune reactions cause real life threatening worries.  In fact, the laboratory class that I had to miss was a microbiology experiment exploring a mock site infection investigation – I joke not! again, I use the word Irony in it’s fullest meaning.


Clinical Chemistry and Cellular Pathology was also the other module I was studying at this time.  I found myself very drawn to this subject and got to see how all of these little molecules and chemicals cause diseased states and the implications thereafter for many.  It reawakened my zest for learning all I can about Diabetes, and in particular Type 1 diabetes of Insulin Dependant Diabetes Mellitus,  a term which is still used in educational materials.  Many parts of a jigsaw are interlacing as I move onwards with my degree.  Parts of the picture, coming clearer as to the why? and what? but not the ‘How’ unfortunately!  There still seems to be a sea of information relating to the involvement of Coxsakie Virus strains as shown here. And for now, I will keep on reading more on this hypothesis!

Now for some anecdotes on insulin pumps.

We turned up to training sessions with our son and he sat there bored for hours, probably dreaming up ways to escape the room without being seen.  At times, I would elbow him and he would jolt up from his stupor and answer a few questions.  Many a frought discussions took place in the car on the way home.  Thinking, is this for him or me? Does he really understand all of this?  So many questions and so much information to take on board as to the mechanisms of how the pump is programmed and how it will all fit into his daily life.   We talked to him at home about this new insulin regime, highlighting how “amazing” the technology is, how it will “transform” his life for the better, how it will make his diabetes “easier” to cope with and then you bring out the cannula!  My son was aged 9 when he first tried the pump. I say when he first tried it …

Picture this! (not the Blondie song) two very anxious parents approaching an, already screaming child, with a needle that appears to the child to be 10 feet long, for a trial of one week.  Now tell that child that this will be better for them, and expect them to listen.  Not easy.  Parents – 0, child – 1.  A trying, frustrating and worrying time for all and probably best to just stick with the seven injections a day for now.

I read of, and hear about children, from babies to teens experiencing needle phobia/cannulation phobia and I guess I just wanted to address this.  Because our children were not given a choice and although they need injections daily, we mustn’t dismiss that they will ever get used to injecting all day long just because they want to eat. When John had his biopsy for coeliac disease, it took two doctors, one nurse and one mum to hold him down for his venous cannula for the drip during surgery.  This experience was comforted by the junior doctor telling me “just because he’s diabetic, it doesn’t mean he likes needles!” For the first time since he was diagnosed it made me realise this was so very, very true!

Roll on a year and for some reason, send that same child to a Diabetes Uk Children’s holiday, miles away in the beautiful rolling Cairngorm mountain range with a bunch of very well qualified health professionals, and Kapoom! He comes home all smiles and cannula firmly in place (although not linked to any insulin pump granted).  Fast forward 2 years, and here we are with our amazing little Medtronic Insulin Pump.  Conversations go a bit like: “have you put on a temporary basal?” whilst shouting after him as he prepares to go the skate park!  “What was your correction?” when the pump works out that his blood glucose is a little too high and needs a little extra insulin to get him within range. Note: this would have been injection number 8 on pen injections!  “Did you hear your missed bolus alarm?”  A function which reminds him, that he has just ate an elephant sized bowl of cereal for breakfast, and yes, I know you’re going to be late for school – but what about that alarm? and “should we put on a 120% basal to cope with the spike?” due to said cereal being gluten free – but full of sugar (a paradox in itself to be explored later on).

John's cool new pump, delivering insulin via a cannulaTo finish on a positive note, his life is transformed, he can eat without injecting everytime, he does have improved HbA1c (7.1 % or 54mmol.mol as opposed to his previous averages >8.4%), we can manage sickness and ketones quicker during a bug – as we now have a blood ketone meter instead of measuring ketones in urine which are not as accurate and perhaps real-time as blood measurements.  We can also manipulate basal rates on an hourly basis, which gives us as parents, the tools to try and prevent full day long hyperglycaemia related to growth/excitement/dietary reasons.  We’ve had to learn ways to cope with how different glycaemic index foods slow the absorption of the insulin (dare I mention the the P word? – answers on a postcard if you know what I am referring to here), we’ve had to try and think like a pancreas basically and at all times, to always encourage him to take on every experience with gumption! what a word.