Living with Coeliacs Disease: four years on!

Crossed Grain logo high res-rgbHow time flies!

It’s been four years today that I walked out of the Woodlands Hospital at Kettering having been told by my consultant that I had Coeliacs Disease. My initial reaction was that of disbelief, followed by confusion and then by dismay as reality set in. The requirement to stick to a gluten-free diet for the rest of my life didn’t really sink in until I spoke to Tina who confirmed what it meant and what food I wouldn’t be able to eat anymore. And of course no more beer!

Four years later and I’m still alive, still overweight and still yearning for gluten-laden food.

But I’ve been really good!

There has, of course, been times where I’ve been a bit lax in ensuring the food I have eaten has been completely GF (eating food that has been cooked with or nearby other food which contains gluten is probably the most difficult thing to adhere to) but I have stuck to the diet rigidly and can count on my hand the number of times I’ve knowingly eaten food with gluten in it.

When I was first diagnosed, it seemed the condition wasn’t particularly well-known, with gluten-free eating more of a celebrity fad diet than a medical affliction. Choice of GF was limited and expensive with only small ranges of food held at the the main supermarkets. But over the years things have improved significantly, to the point where shops like Sainsbury’s now have large sections of gluten-free food, with an ever-increasing level of choice. Whilst the prices are still higher than normal food, at least I can now enjoy a wider range of products of similar texture and quality to gluten-laden food.

A recent article on Coeliacs suggests a cure could be on the way soon, with a tablet that could be taken before eating normal food which would stop the body’s immune system from attacking healthy tissue. A while off yet, at least there is a small glint of hope that one day I will be able to enjoy a slice of crusty bread again!

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.

Repellent blood?

For as long as I can remember I was always the one that got the insect bites; whether it was bugs on holiday or fleas from the dog or cats at home. For some reason they took one look my skin and decided that it was worth chomping into. And the bites always itched like hell and normally ended with some sort of allergic reaction and swelling.

Tina, on the other hand, didn’t seem to get targeted in the same way.

But things have now changed.

In fact things changed about two years ago when I was diagnosed with Coeliacs Disease.

It is now very rare that when I get bitten by insects I suffer much more than a small amount of itching, which normally stops within a few minutes or hours. As an example, whilst we were in the Grand Canyon, I was bitten quite a few times on my arms and legs, with visible marks where the darling mosquitoes fed on my blood, but no itching or reaction.

Tina, on the other hand, who was also attacked at the Canyon, has reacted badly to the bites, with lots of itching and swelling. And now, three weeks later, one of the bites has swollen badly and started to spread. And she’s been feeling tired and run down. So today she went to see the GP practice nurse and had to give a blood sample and has been put on antibiotics. The doctor also saw her and was concerned over the bites, suspecting that she may have contracted West Nile Virus, which is transmitted by infected mozzies and is prevalent in North America.

Fingers crossed the tests come back negative as the virus can result in some serious side-affects.

And for me  it looks like my gluten-free blood may have some resistant properties.

I wonder if I can bottle it to create an insect repellent?

UPDATE – Tina’s blood test results came back clear so she’s not got the West Nile virus, just a headache, very tired and flu-like symptoms. Goes with the winter-like weather we’ve had recently!

Living with Coeliacs Disease…one year on!

It is exactly one year to the day that I was diagnosed with having Coeliacs Disease.  I can still vividly recall my consultant explaining the condition and the need to change my diet to a gluten-free one and that realisation that things were going to be different in my life from that point onwards.

And so a year later and how have I coped?

Well I must say I think I have done very well under the circumstances.

To have to stop eating the things you love such as crusty bread, chip shop chips, chinese food and KFC has been difficult but I have survived (and in typing that list I’ve realised that they are not exactly the most healthy of foodstuffs anyhow).  Previous to diagnosis, if Tina or I couldn’t be bothered to cook a meal then we’d be off out for a pizza or order in a kebab takeaway but now things are a bit different, and for the better I suppose.

I do miss normal sausages, normal crusty meat pies and normal sponge puddings but to be honest the GF alternatives are now just as good and most supermarkets stock a good range. And with the alternative flours Tina can knock up superb cakes and puddings herself, which everyone eats and are just as good as the gluten-laden versions.

Health wise I haven’t really noticed much difference from pre-diagnosis; I still caught a couple of colds during the winter, I went down with a stomach upset from Egypt and I haven’t got that new energy my consultant said I would get after six months of the new diet. I guess my immune system is still not quite 100% yet.

Mentally I have had a few downs, but all in all I think I have coped well, I am still alive, I am still managing to eat well (the size of my stomach can verify that!) so things aren’t so bad really.

But the real credit to getting through the past year has to go to Tina, who has looked after me brilliantly. Without Tina I am certain I would be eating much of the things I shouldn’t be eating.

Right, off now to enjoy one of those wheat-free cereals I have in my cupboard!

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!