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New Zealand

Kaycee

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Kaycee Collaborator
Kaycee
Posted

I am newly diagnosed, well it has been three months now. It has been a struggle to say the least, and a lot of things are trial and error. I find food manufacturers are not very careful in labelling their foods adequately.

I am tending to get away from things with additives, preservatives, nonspecified colours and flavours. But even in doing this, I do get caught out on occassion.

It seems to be quite a lonely disease at times. Other members of my family as in brothers and sisters have not gone ahead to get tested. As it is considered genetic and I am the first in my immediated family to have the disease, I would like to know where it came from? So I can blame them, yeah right. No but just to know whether it is my mothers or fathers side. Both have the potential to be carriers, if that is what they can be.

My father's side has more than enough incidences of bowel cancer, and my mother and I have similar upset stomachs etc. Mum actually told me to get checked out, find out what we have. But now she is denying she is sick and is feeling fine. At least dad is in the process of being checked, but mums doctor said he would not test without any symptons. I fell like hiting my head against a brick wall with that comment.

Yesterday I was on jury service and it was my last day, and we were deliberating and lunch was brought in. And there was not even a thing i could eat. It was all savouries, pastries and sammies. But you learn to take something with you wherever you go, and that is precisely what happens.

Would like to hear from people in New Zealand or anywhere.

Just a point, why is that most alcoholic drinks, especially pre mixed drinks do not say what is in them?

Cathy

Life it too short for bad coffee!

Diagnosed with blood tests 14 Febuary 2006 (Hubby did not know whether it was flour or flowers i could not have, so got no flowers for valentines day, his excuse).

Have had follow up blood tests, levels are going down slowly, and thought I was doing so good. Go for more test soon.

  • 3 months later...
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Kaycee Collaborator
Kaycee
Posted
  • Author

There must be no-one in New Zealand apart from me who reads this site.

One last call. hello New Zealanders.

Cathy

westie Newbie
westie
Posted
There must be no-one in New Zealand apart from me who reads this site.

One last call. hello New Zealanders.

Cathy

Hi there, I never knew this site existed, well I'm from NZ only just though, arrived from UK in March. I was diagnosed last year and whilst in the UK I was fine product labelling was fantastic, and lots of variety. Since being here I have gone back to square 1, it really is a challenge, 1 I could do without, alot of the products here which are the same as UK actually have wheat in them and ingredients are different when manufactured in Austrailia (which alot of products tend to be). I have found eating out a real effort, and often feel it's just not worth it, I have finally received my special authority card so that will hope with the cost of gluten-free food, but overall am feeling fed up! On a more positive side I am experimenting all the time with new recepies and we all eat gluten-free meals, I have found a gluten-free bakery where I do a big shop once a month or so, and the supermarket selections are slowly getting larger.

Hopefully things can only get better!!!

tee Newbie
tee
Posted

Hi Cathy and Westie,

Hope you are still around. I've only just discovered this site myself. I've been gluten free for nearly 3 years now (self- diagnosed) and it's been a steep learning curve. I'm also the first in my family to have it, and I think half the time they think I'm faking it and forget. Not my mum, she's pretty good, but the rest of my family just don't get it. Fortunately I live 2 hours away and don't get invited for meals that often. To be honest though, I'm almost glad I am intolerant sometimes, it certainly makes for a healthier lifestyle and definately helps me to keep slim (esp while being pregnant and craving sausage rolls and meat pies that I couldn't eat!!!).

My 11 month old son seems to have escaped the same fate as me which is excellent, although he doesn't seem to have escaped a supressed immune system and suffers from ezcema.

Fortunately I've always been interested in health and nutrition so am always searching for information, recipes etc, and since I'm usually the cook in our household, we always eat gluten free (my husband does like to indulge in his fresh bread mind you).

Just a question for you Westie. When you do the blood test, do you have to have eaten gluten? I ask because I wanted my doctor to confirm that I am intolerant but the blood tests came back negative. Is this because I haven't eaten gluten in such a long time? I would love to get 1 of those card things, but need a confirmed diagnoses first. My doctor wasn't too understanding of the whole disease, in fact she thinks it's the latest fade diet????????????? Doctors????????????? but I won't go there.

Cheers,

Kaycee Collaborator
Kaycee
Posted
  • Author

Tee, I will answer your question, yes you do have to have been eating gluten to get a positive result. I think after 3 or four months, you would get a negative result. I guess you just have to base it on the fact that you feel better without gluten, and leave it at that. But it is nice to have a diagnosis, and then those that think you are just on a fad diet will know it is for real!

So Tee, what happens when you eat gluten? Do you get those horrible reactions? I hope there is some way to find out for sure for yourself, but the only way I can think of would be to eat gluten, but who needs that or wants to do it?

I must admit that when I went for tests, I had not eaten gluten for about 6 weeks, like you I self diagnosed. I went to the doc, and he said it sounds like it, tested me and then they came back weakly positive, and so I have my diagnosis. Still 2 more blood tests later, it is still weakly positive. An I don't think I have eaten gluten deliberately. He actually listened to me and was quite proud of himself that that was the second diagnosis he had made recently. He did seem understanding, and ready to listen.

What card are you talking about. The card from the coeliac society, which I have got two off, or is it like a medic alert?

westie Newbie
westie
Posted
Hi Cathy and Westie,

Hope you are still around. I've only just discovered this site myself. I've been gluten free for nearly 3 years now (self- diagnosed) and it's been a steep learning curve. I'm also the first in my family to have it, and I think half the time they think I'm faking it and forget. Not my mum, she's pretty good, but the rest of my family just don't get it. Fortunately I live 2 hours away and don't get invited for meals that often. To be honest though, I'm almost glad I am intolerant sometimes, it certainly makes for a healthier lifestyle and definately helps me to keep slim (esp while being pregnant and craving sausage rolls and meat pies that I couldn't eat!!!).

My 11 month old son seems to have escaped the same fate as me which is excellent, although he doesn't seem to have escaped a supressed immune system and suffers from ezcema.

Fortunately I've always been interested in health and nutrition so am always searching for information, recipes etc, and since I'm usually the cook in our household, we always eat gluten free (my husband does like to indulge in his fresh bread mind you).

Just a question for you Westie. When you do the blood test, do you have to have eaten gluten? I ask because I wanted my doctor to confirm that I am intolerant but the blood tests came back negative. Is this because I haven't eaten gluten in such a long time? I would love to get 1 of those card things, but need a confirmed diagnoses first. My doctor wasn't too understanding of the whole disease, in fact she thinks it's the latest fade diet????????????? Doctors????????????? but I won't go there.

Cheers,

Hi there,

I was diagnosed following a gluten challenge, ie I had to start eating large amounts of gluten products again for 3 weeks prior to gastroscopy and biopsy (this is the only definitive guide to diagnosis of coeliac disease), so that was pretty awful particularly as I had just begun to feel better, I react to the slightest trace, and people really don't understand, if in doubt obviously I don't bother.

I used to enjoy drinking the alco pops, but had to stop as like beer they are infact brewed, including malt products.

I have just managed to get a special authority card so am in the process of obtaining much cheaper gluten free essentials, fortunatley my local pharmacist has a daughter with coeliac disease and so is reaaly clued up , will let you know how I get on!!!!

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