Kaycee's Blog

I am usually a tolerant person, but since I have discovered an intolerance, I am thinking maybe I should act the part.

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This is going back a little time and it is a real rant.

When first diagnosed with coeliac I had felt like I am on my own with this. The forums have been great, but we are all such different people with so many different needs, it is hard to get the exact course to take with anybody. It is a lot of trial and error. But you have all reinforced in me, that I am not going crazy, and I find you all a great support, and there is a common bond that keeps us together. Wheat! Felt like I swore there.

It has been such a long hard winding road full of pot holes and misdirections. Why do we have to figure it out on our own?

When my Doctor diagnosed me, it felt he was saying there you have it, go out and heal yourself. I must admit he sounded like he felt proud that it was his second diagnosis of this disease in a few weeks. He did mention joining the coeliac society of NZ, which I did. But there has been no support there. I did ring a member for this region, and I was quite appalled that she mentioned that she has a sandwich now and again, so that she wouldn’t forget what it tasted like, porridge, malted corn flakes and malted rice bubbles on a regular basis She did mention that she had not been well lately, well the answer is probably there, she is doing it to herself. Even though she was a friend of my parents, I will not seek out her advice, even though she is mentioned as a support person.

It feels like the medical profession has wiped its hands off me, as there is nothing more that they can do. It is all up to me, my medication is my diet. Is that what it is, the Doctor (does he need a capital letter?) can’t prescribe anything, so he just sends us on our merry way? If we have a pill to pop, maybe the doctors would be more on top of things? I don’t even know when he would like me to see him again.

I can’t help but feel, there is something missing in our care. Like I said he can’t prescribe a pill, and he probably thinks, this is easy, it is only a food issue. But in having said that, I have over the months managed quite miserably at times. Surely each time I gluten myself, I am putting myself at risk of more damage. I read the labels so carefully, and now avoid most additives, preservatives, flavours etc, except those in lemonade and flavoured fizzy’s, and chocolate. But they are not a problem. As the months have gone by, my food options have shrunk. Maybe to have known that at the outset, it would’ve quite catastrophic, but I think we need to know. But who is there to tell us? I don’t think I have any other intolerances, as when I eat fruit and veges and other grains, and unprocessed meat I don’t have any problems. My diet is full of fresh food and very basic, that if I ate anything that disagreed with me, I feel I would be able to pinpoint the offender at once, and that usually comes down to flavourings etc. Maybe I am allergic to the modern age as well, you know all those preservatives and things. But it has taken me months to get here. At last I am feeling I am getting on top of this.

Here is a website that I found quite interesting about all the additives in our foods, with hints about what is good and bad for us. It even mentions coeliac in a few things

foodadditives.org.nz

It was a great site to start with, but now I hardly go there anymore, as I hardly need to worry about additives.

Food manufacturers are something I can vent anger at too. I hate it when they just mention flavour or colours, how am I to know if they are safe or not. I know malt vinegar is an absolute no, so when something said just vinegar, and their other products had malt vinegar listed on other bottles, I thought this is fine, but no, it was not. Their labelling leaves a lot to be desired. In New Zealand all food labels need to say whether they contain gluten, soy peanuts and milk. But that is not consistent by any means. I guess a lot of manufactures don’t even know where the source of their flavours come from, or could they think, it is only a little bit, who would know? Well I would know!

Now I come to the wheat industry. Is it the wheat industry that keeps things as they are? I can understand they would have a lot to loose if a big chunk of the population could not eat wheat products. What upsets me is that you can barely pick up an item of pre-packaged food off the supermarket shelf that does not contain a form of wheat in it. It is a bit like the tobacco industry, and they have conceded their product is dangerous and have put on warning labels. Maybe there should be warnings on bags of flour etc. That would give us publicity.

We do need a lot more publicity about this disease. How can things be so quiet when it is estimated that one in a hundred can have the disease and 1 in three can be wheat intolerant (I think that is the numbers), it is just about like an epidemic. I know in Italy every child is screened at five years of age. Not sure what sort of screening, but it is to do with Italy’s high level of coeliacs. As it was, the doctor only gave me something he had printed off the net and a pamphlet also photocopied. Going to the library, I only found one book on the shelves about coeliac, and about five others with food allergy’s etc, that just got a little mention about coeliac. Big deal. I have probably gone past the stage of needing more information, but my hubby must be getting a bit miffed with the amount of time I am on the net doing my searches.

I found a good book written by Michael J Fox and how he went though his debilitating disease, Parkinson’s. He mentioned the six stages of grief, and I can so relate to that. I came away feeling, that no matter what disease you have, we all feel the same about it, we go through grief and eventually find our way out the other side to acceptance. It was the book I really needed to read at the time. I read Christopher’s Reeves book, the following week, even though it was easier to read, I did not get much out it. I gained so much from Michael, even though his book was not so easy to read. But reading it, I could imagine him writing as he spoke. His personality came through for me.

Enough of my rant.