Coeliacs update

Crossed Grain logo high res-rgbIn July it will be the 4th anniversary of being diagnosed with Coeliacs Disease, the condition which means I am intolerant to gluten. Despite my initial fears about having to survive on a strict diet that excluded bread, beer and cereals I did adjust surprisingly well to the imposed restrictions and it’s not been as bad as I imagined.

Because of the serious health consequences that could arise if I continued to each gluten products; osteoporosis and bowel cancer being two conditions sufferers are known to get, I have taken the disease seriously and in the four years to date I have not deliberately eaten anything that contains gluten. That’s not to says I’ve not had any gluten; I know I have. I was once informed a cheesecake was gluten free and it wasn’t until I’d consumed a portion did I find out it actually wasn’t gluten-free after all. I didn’t have any reaction to eating the cake though; again another reason why I need to remain strict with myself.

The other reason I’ve been able to stick to the diet is the improved labelling that has been introduced on all food packaging in the UK. It is now much easier to see whether the food contains gluten or even if it is made in the same factory as gluten products. And the abundance of gluten-free products now available allows for a much improved choice, even if the prices seem to be twice as expensive. For the first couple of years I signed up for the pre-pay prescription option, whereby I could get certain foods on the National Health Service each month but as more of the food is available in shops I have stopped getting it with this method.

So what does the future hold for me, food wise? Well, when I was diagnosed I was told that the condition was life-long and there was no cure so I didn’t really consider I could ever eat Pizza Hut pizza again or enjoy a pint of lager from a pub but in the latest copy of the Coeliacs UK magazine, it suggested that a vaccine is being developed that could be a cure for about 80-90% of coeliac disease sufferers. There was also an article in The Mail. Further trials are about to get underway which, if successful , could mean many people could once again enjoy foods that have been denied them through this disease.

Fingers crossed it is successful and I’m not one of the 20% who don’t have the gene that this vaccine cures!

Coeliacs Update

It’s quite a while since I gave an update regarding how I’ve been coping with Coeliacs Disease. Incredibly it will be three years this July that I was diagnosed with the condition and despite the restrictions on what food I can eat I am now pretty relaxed about the whole thing. I am also getting a bit blasé about it too, which I guess I shouldn’t really do.

In normal day-to-day life I am in my routine of making my own lunch or dinners using gluten-free products and am safe in the knowledge that if I stick to it I’ll be OK. The problem comes when I go away or am eating out. Then I tend to just guess that the food I’m about to eat will be gluten-free, when really I should ask.

For example, whilst I was away a few weeks ago in Hook, the dinner choice at the hotel was pre-ordered and whilst I went for the items on the menu looked GF I didn’t actually check with the staff, which I should have really done (yes, I know if Tina was with me she would have insisted I ask). The real reason is that I don’t really like to make a fuss and if I think I can get away without having to ask I won’t bother.

The other problem is that as I don’t have any reaction to eating gluten I assume that if it appears GF it will be. And that’s the problem as they do put all sorts of things in food that you wouldn’t expect.

There are a couple of ‘treats’ I do have which I am uncertain as to whether they are totally gluten-free, but take the chance anyway. One is kebab meat, a food which I do eat occasionally. In theory this type of meat is pure lamb and therefore safe for my pallet but unfortunately, just the look of it suggests it’s seen some undesirable additives of some kind. Still I have spoken to the takeaway place and they assure me it’s gluten-free and so that’s good enough for me.

The other ‘treat’ is chip shop chips. Now I know that the chippy in our town does not fry his chips in the same vat as the battered fish, but often there is contamination. But even so I have had the occasional ‘Bens Chippy’ and picked off the batter that occasionally sticks to the chips. Now this is very wrong as almost certainly I wouldn’t get it all off. But as I said early as I don’t get any reaction it’s hard to train my brain to say “no!”.

And so I’m still alive, not losing weight (in fact I’ve probably put some on) and as healthy as I have ever been so I guess I should be thankful that I was diagnosed as early as I was.

Cereal number

As you are probably aware I was diagnosed with Coeliac Disease just under two years ago and over the proceeding months I have documented my ‘struggle’ to find gluten-free foods that are a direct substitute for the real thing.

One of the early realisations was that one of the types of breakfast cereals, Special K, that I had regularly enjoyed each morning had actually been doing me harm, pre-diagnosis. Now some would say I shouldn’t really miss that particular brand of cereal as they are not very tasty, but I actually liked them, especially the ones that come with dried fruit. So when I was diagnosed I looked for an alternative, but to my frustration I couldn’t find an alternative. Until last month…

As a coeliac, I signed up to a number of websites that supply GF food and they regularly send me newsletters offering advise and guidance, and occasionally sending out free samples. One of the companies, Juvela, previously only supplied items through prescription; you had to order via the pharmacy each month and mainly sold bread, rolls and biscuits.  But on reading their newsletter they stated that they were now selling online and so intrigued, I checked their new site out.

And to my surprise I saw they were selling ‘Flakes with Berries’, ‘Special Flakes’ and ‘Fibre Flakes’.

And they look exactly like my old favourite Special K.

And so I ordered a couple of packets.

And when they arrived they tasted just like the real thing.

And so I ordered some more.

And the next lot arrived today.

In a big box…

In order to get the delivery free you had to spend over thirty five quid on products so I ordered a few boxes; well actually I ordered eight boxes…and some cakes…and some biscuits!

So now I have enough Special K substitute to last me months but luckily the use by date is March 2012. The only problem now is finding space in the kitchen cupboard to store them. Doh!

License to print money

Last November I attended an appointment with my consultant to discuss my progress after I was diagnosed with Coeliacs disease earlier that year.  The meeting was arranged to discuss how I was getting on with the diet and to check that I was seeing an improvement to my health following the diagnosis. As I hadn’t observed any visible or physical changes and I was feeling fit and well the meeting was short; five minutes if I recall.

He suggested that I saw him again six months later, and today I attended that follow-up appointment. 

I arrived at 8.55 for a 9.00 am slot and was called in immediately to see him. He said hello, asked how I was, confirmed my blood test was normal and said that he would like to see me again in six months time. I was out of the room within a minute of sitting down and on my way home.

If I recall the consultation charge for the last appointment was £120 and therefore I have just calculuated that he earned a whopping £2 per second during the consultation (less the fees he pays BUPA). 

Not a bad minutes work!

I don’t think I’ll bother making another appointment unless my circumstances change.

Dodgy Immune System

A couple of weeks ago I got a letter from the blood doning people reminding me that I could once again attend a session after a year break. The last time I attended the Coventry clinic I was not allowed to give blood as the initial tests had indicated I was anaemic and needed to get it checked out. And that was the start of my eventual diagnosis of having Coeliacs Disease.

As the condition is diet controlled, and I am now avoiding gluten, my body should now be back to normal and therefore I was confident I would pass the anaemia test this time around. And I did and went on to give a full donation. The nurse did advise that they normally only invite people with Coeliacs to donate once a year due to the risk of having reduced immunity. I though thought to myself “nah, if I’m OK this time I’ll make an appointment in six months time, I’m sure it’ll be alright”.

But then yesterday I woke up with a blocked nose and headache and today it has developed into another bloody cold.

So I think the decision about further blood doning has been made; they’re only getting my precious but dodgy blood once a year!