That should read, 5 minutes up in flames!!! As you may be aware the British media moved on from bashing Diabetics yesterday to focus their attention on Coeliac sufferers today following on from the inaccurate and hurtful portrayal of Coeliac suffers bleeding the country dry by consuming gluten free ‘junk food’ courtesy of the NHS.
BBC3CR (Three Counties Radio) did a piece on the JVS phone in this morning and I called in and had 25mins on hold to rehearse the points I wanted to make to try to add an alternative perspective to the angry non-coeliac callers with pitchforks and burning torches! Of course I jest, ignorance is bliss so I wanted to educate, educate, educate… I failed on an epic scale!
The following is a message I sent BBC3CR’s Jonathan Vernon-Smith on Facebook, will he read it? Will his opinion soften, if only a little? I honestly don’t know the answer to that question. Did I feel better for writing it? YES! yes I did, so in the grand scheme of things I can brush myself off, take a deep breath … and decide what to make the kids for lunch!
“Well! I think it’s fair to say that went terribly! I’d been waiting for 25mins and just at the moment we began to talk my sister came in the back door and was calling up the stairs to me which completely put me off – impeccable timing sis! I’m not writing to you to get more air time, I think my days of radio call-in’s are well and truly over. What I did want to do was explain myself a little bit better than the feeble attempt earlier!
Changes to our lifestyle are not being able to walk down the street on a day out or a family holiday and pop into a cafe to have tea or a snack, I have to research venues to eat before we go or pop into each cafe and repeatedly get turned away until we find one that does gluten free. In a nutshell, impulsiveness ends with coeliac disease. Meals need to be made from scratch (not a bad thing I hear you cry) and lunches become very mundane and uninspiring. As a parent you want your child to be ‘normal’ and to create this false reality takes a lot of time and effort and is very time consuming and often leaves you emotionally exhausted … I’m writing this now having dried my tears from 20mins of crying which is very rare for me but hey can’t be a supermum ALL the time (what a wally, pull yourself together Rebecca for goodness sakes!)
Regarding GF prescriptions Bethany qualifies for 13pts of gluten free foods each month, a loaf of bread is 1pt but you have to get them in boxes of 6 or 8, a packet of flour is 2pts and pasta is 1 or 2pts. Bethany cannot get biscuits or cakes on prescription and even if she could I’d feel uncomfortable doing so. Some months we use all 13pts other months less. If you don’t use your pts the local trust remove your right to prescriptions. You can ONLY get prescriptions on the NHS if you have been officially diagnosed with Coeliac Disease which is via an antibodies blood test and a biopsy (unless you’re a child under 8yrs where a blood test often comes up positive with little margin of error)
My son Lewis whose 8 suffers as a knock-on effect because we have to adapt our lifestyle to fit in with Bethany and long story short he now is under CAMHS for anxiety and attachment disorders and the psychiatrists believe that growing up with Bethany as a sister has made him nervous, hypervigilant and lead to an inner turmoil of loving and hating his sister at the same time (not uncommon in siblings of type 1 let alone coeliac disease too)
I buy lots of Beth’s foods from Sainsbury’s, as Aldi do not stock GF foods, I can spend £70-80pw on family groceries and then pop to Sainsbury’s and spend up to £30 on food for Bethany alone. The photo I’ve added was brought yesterday from Wholefoods in Bedford. It cost £13.95 for 2x pasta, 1x gnocchi, flour and a rare treat (the teacakes cost over £3 alone!) I posted this photo on your Twitter feed earlier but under my blog/website name – Glutarama.com
Bethany LOVES iceberg lettuce and celery and given half the chance will eat a whole lettuce in one sitting … this has no carbohydrates and without these Bethany’s blood sugars will plummet therefore she needs carbohydrate to maintain healthy levels.
If Bethany is contaminated with gluten we can tell by her blood sugar levels normally within 24hrs (this is where the diabetes ironically compliments coeliac disease because we can use her blood sugars as an indicator as to when she was contaminated) . This is because the gluten presence in her gut has caused the body’s immune system to gather its armies of antibodies and this leads to the increased acids in her tummy to start to breakdown and digest her gut lining. The gut lining is made up of tiny hairs called villi, these villi ‘tickle’ food as it passes through your gut and absorb the nutrients your body needs to thrive. If the villi have been dissolved by acid we see a dramatic drop in Beth’s blood sugar levels because her insulin pump will be giving her insulin for a meal she effectively didn’t have because it wasn’t absorbed!
(while I think of it, don’t children in school receive a slice of bread each day with their dinner because the Gov wanted children to have a staple carbohydrate in their diet … could be wrong?)
I agree that the NHS needs to change their ways, do a strict stock-check of what they’re dishing out and cut money where possible. And I am irritated by faddy dieters who temporarily refrain from bread to shed a few pounds (poor souls), but, had it not been for this category of people the GF industry wouldn’t have developed at the rate it has in the past 5yrs of Beth’s condition and Beth wouldn’t have the choice she has today on the shelves in the supermarkets when I’m feeling rich! However, please try (not easy, I accept) to see this through my eyes; a mum of a little girl who didn’t ask for T1 Diabetes, nor did she ask for Coeliac. Both will be with her for the rest of her life, both can lead to horrific complications if not managed properly.
Could I be so bold to ask a favour? spend two days thinking like a coeliac, I wouldn’t expect you to eat GF (it can taste bloody awful, even washed down with a Pino!) but live those two days looking at the ingredients of the not-so-obvious foods; sauces, gravies, cereals, drinks (yes even some drinks!) and work out how much of it would have made you poorly had you been a coeliac.
I do hope that by reading this you are a little enlightened to the issues Bethany faces at such a young age and you feel slightly less irritated by the subject.”
Rebecca Smith, Glutarama.