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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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.

PEANUTS!

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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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.


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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 : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861744/

The effects of gluten free diet on glucose control for those with diabetes : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1763216/

coeliac ukCoeliac Uk, the leading charity for those living with the condition.

www.ilumiworld.com – a new provider of healthy, gluten free ready meals for those who cannot spend every day slogging over a hot stove!

www.glutafin.co.uk  – a well known provider of free prescription food

www.dsglutenfree.com – a brand which can be found in most supermarkets.

http://www.wheat-freebakerydirect.com/ – an amazing online ordering company, who make Tiger bread, and doughnuts, and goodies (Oooh hungry?)

http://gfreebythesea.me/ – a fellow blogger, in the Plymouth area of the UK!