It's my life, but not as I knew it!

Posts tagged ‘health’

The True Value of Gluten Free Food

This time last year our home was filled with delicious, gluten-containing foods and ingredients. Fast forward to today and both Biscuit and my hubby, R, are confirmed Coeliacs. In order to prevent cross contamination (see more information from Coeliac UK here), our entire home is now completely, 100% gluten-free.

When Biscuit was first diagnosed with Coeliac Disease, we met with her gastro (tummy) doctor. Dr K. told me that Coeliac Disease is unique in the fact that no medication is required and that by simply changing her diet she will be free of her painful and potentially debilitating symptoms, and she will no longer be at increased risk of the complications that can be caused by her eating gluten (see Coeliac UK’s list here). In summary; through absolutely no fault of her own, she must eat a completely gluten-free diet in order to stay healthy. We were lucky, our GP prescribed Biscuit gluten-free food. The prescription doesn’t cover everything (someone of Biscuit’s age gets 11 units a month and someone of R’s age gets 18 units) but it helps. 1 unit does not equal 1 item, see Glutafin’s table indicating how many units for each individual item here
And then came yesterday morning’s news that the NHS Clinical Commissioners chief executive has said that the NHS must reduce spending on prescription items that offer “little or no clinical value” (see BBC News link here). Gluten-free food is being categorised as such and they are talking about potentially banning GPs from prescribing it. Nb: I am talking about gluten-free food for Coeliacs not for those who choose to eat a gluten-free diet (just a friendly reminder at this point that Coeliac is an auto-immune disease, not a lifestyle choice; please read more on my previous post).
I’m sure you can imagine what Biscuit and R’s diagnoses have done to our shopping lists and household expenditure… Well, imagine no longer! I have put together a ‘then and now’ shopping list, including prices. BTW we live in Central London. There are no large supermarkets near us. We rely on small shops and online shopping (but not Asda… they don’t deliver inside the congestion charge zone…).
lasts us 1 week
lasts us 1-2 days
2 for £5
 ready made
 ready made
1 box
1 box
Breakfast Biscuits
1 box
1 box
Brioche Rolls
8 rolls
4 rolls
Self raising flour
R and I both work full-time. We are, therefore, in a more privileged position than many others who are having to scrimp and save to buy food that doesn’t make them ill, but that doesn’t mean that it hasn’t had a significant negative impact on us financially.  As happened in our family, you are more likely to have Coeliac Disease if you have a close relative with the condition already. This means people are having to buy gluten-free products for more than one person, even if they don’t do what we did and impose a gluten-free diet on everyone in the house.
I hope this post goes a little way to show true value and importance of gluten-free food on prescription. Gluten-free food may sound like an obvious choice to drop from a prescription list in order to save the NHS money (having worked for the NHS for the last 11 years I promise I do understand how important this is), but gluten-free food is medication to people with Coeliac Disease.  

Gluten-Free Biscuit

I love Christmas, I love food and I love baking and, although this blog is not primarily about me, these are things I have spent more than an ordinate amount of time thinking about in recent weeks.

The Christmas ads are out; cosy, happy ads showing us all the delicious family foods we could spend our holidays tucking in to. Normally I watch these salivating and planning which foods to buy and which foods I would want to try making. This year I am watching them with different eyes; eyes which are starting to understand the magnitude of someone not being able to eat what most other people can. 

As of October this year, Biscuit was diagnosed as having Coeliac Disease. This was after years of being convinced that she wasn’t absorbing her food properly, months of toileting troubles (leading to embarrassment and a dip in her confidence) and goodness knows how long of discomfort, cramps and tummy pain for my beautiful little red-haired girl. 

For those of you who are not ‘in the know’ about Coeliac, here is my little run-down; Coeliac disease is an auto-immune condition, meaning that the immune system mistakenly see substances inside of gluten (the protein in wheat, barley and rye) as a threat and attacks them. This leads to damage of the villi (finger like projections in the small intestine) which affects the body’s ability to absorb nutrients from food ingested. It is not an allergy or an intolerance. 
When Biscuit eats gluten she gets very constipated, with a bloated and uncomfortable tummy. She also feels very tired a lot. There are lots of symptoms (it’s worth checking out Coeliac U.K. for a list of symptoms) to watch out for, as some of them can seem quite non-specific. That’s why it can sometimes take a long time for a diagnosis to be made. It is important that a diagnosis is made as potential long-term complications of untreated Coeliac disease include osteoporosis, anaemia, vitamin deficiencies and it can lead to certain types of cancer.

The treatment of Coeliac disease is the following of a strict gluten-free diet. This is done with the supervision, support and advice of a dietician. 

So this is where we currently are. We have decontaminated the entire kitchen (cleaned it for top to bottom, sterilised the chopping boards and got a new toaster), got rid of all food containing gluten and refilled the cupboards after visiting all the free-from sections in our local shops. I have spent time with the school inclusion officer (and provided her the Coeliac U.K. school pack) to help the catering company support Biscuit to eat gluten-free school lunches). I have become militant at checking labels! 

It has been a tricky year for us, and I have neglected this blog but we are back and we will be showing you all the gluten-free goodness (and not-so-goodness) we have managed to find during our Coeliac journey. 

Thank you for listening 

Toddler Health; Eczema

Being a mama of two-year-old twins and doing the course I am doing, there are many times that there are crossovers between my personal and professional lives. I learn something from a parent I have met, or a colleague I have worked with or some training I have done and know that I can take that information and it will have a positive impact on my home life. I can also experience something with Biscuit and/or Cracker and it makes me a better public health nurse.

I have been working my behind off at academic work for the past few weeks and one of the essays (yes I did say one of the essays, please feel for me!) was regarding a prescription for topical treatment for eczema. Biscuit and Cracker have always had super sensitive skin and both of them have since been diagnosed with eczema and prescribed triple emollient therapy.

Triple emollient therapy is when a child (I can only speak from experience with children) gets three products- a cream/gel, bath stuff and a soap-substitute (sometimes one product can be used for both the bath and for washing with, it depends on what is prescribed). There are lots of products available on the market, both over-the-counter from your pharmacist or on prescription. It can depend on what the prescriber is used to, what their trust recommends and what the patient (or parent/carer) knows and likes. If you are thinking that your little one needs eczema treatment- remember that the greasier the cream, the better it is. It just may feel a bit slippery on their skin. It took us a couple of different products before we found ones that worked well for us.

I am not writing this post to tell you whether your child needs creams prescribing, or what treatment your prescriber will recommend. If you have any worries or concerns, please see your GP/Health VIsitor/Pharmacist and talk through with them and allow them to assess your child’s skin.

I wanted to write this post to give you tips that I have found out through research, and that we have found useful to know.

1) If you use the bath additive, be aware of how slippery your child will be. Please take extra care. Little ones may slip out of your hand and bigger ones may slip over in the bath or on the bathroom floor.

2) This is one of my Top Tips! We found that, when using a bath additive, our bath was always incredibly greasy and was constantly getting blocked. I have since found out that squirting washing-up liquid round the bath and rinsing it off makes the bath squeaky clean, as well cutting through any grease in the pipes and saving us having to use the plunger to drain the water away!!

3) When drying a child, try and pat them dry rather than rubbing. This is gentler on their skin and won’t rub off any of that moisturising layer from the bath additive.

4) When applying cream to them, smooth it on, rather than rubbing it in, and go in the direction of their hair growth. If you put cream on your arms against the hair growth you can feel that it is not comfortable!

5) As soon as Biscuit and Cracker have had their cream applied at night we put them straight in their cotton pyjamas. We found that you can really smother them in it and the pjs keep it on their skin. PLUS it doesn’t go everywhere.

6) Try to use cotton clothes as much as possible.

7) Use non-biological washing powder and sensitive fabric conditioner. I am waiting for something to happen to my washing machine as we can’t use a well-known product that reduces limescale and helps it to “live longer”.

8) Apply the cream often, we put in on Cracker (whose skin is worse) in the morning, at lunchtime and before bed, plus whenever we see him scratching.

I hope that at least one of my tips may be useful to you if your child has eczema. Let me know if you have any others and I will update my list!

The views and tips listed here are all my own.

Mama Knows Best

Apologies for my lack of contact with you lovely people and thanks for bearing with me.
As well as my university course becoming quite full on with multiple essays and long stretches on placement, my little Biscuit was quite poorly.
She is, thankfully, well on the mend now and like a different child than the pale, lethargic, wheezy creature that she became.

Back in January she caught really bad bacterial tonsillitis, she was in too much pain to swallow anything at all. When our GP examined her, he didn’t even look in her throat and sent us on our way. The next day we took her to A&E where they prescribed her antibiotics and discharged us. She had barely recovered from this when she was struck down with a viral wheeze requiring admission to hospital and 2 hourly inhalers overnight. Less than a month later and then came an ambulance ride to hospital for another admission for viral wheeze, needing a nebuliser and then inhalers all night.
We thought she had turned the corner after this episode, but then she suddenly got poorly again. She was wheezing and struggling and really unsettled. Another ambulance ride to the hospital, this time straight into resus for back-to-back nebulisers and oxygen followed by two nights in the hospital for treatment.

But this post isn’t about Biscuit’s trips to hospital. It’s about that mother’s instinct that tells you when something isn’t quite right. I had a niggly feeling about Biscuit’s health, a feeling that gave me sleepless nights and a ton of stress. She hadn’t put on any weight since December, was so pale she looked transparent and was always tired with big black bags under her eyes. My GP completely dismissed these symptoms and my niggly feeling, telling me that no-one would find anything wrong with her.
It may sound crazy, but her last trip into hospital may have been a good thing as it made people review her health and we were starting on longer-term treatment to treat the cause, not just the symptoms. We are also now under a consultant paediatrician to keep an eye on her I’m hoping that she will now start putting on weight and get stronger and be able to fight of these horrible viruses better.
So Mamas, and Papas too, if you have a feeling that one of your little ones isn’t quite right then listen to yourself and take them to your doctor, or talk to your health visitor and get someone to listen to you too.