Allergies 'R' Us – Supporting Australians with Allergies and Intolerances

Mishaps & Mayhem of a Gluten Free Life is running this blog hop. See her site for further details.

I’ve always known about food allergies, my older sister is anaphylactic to fish, she can’t even smell it without having a reaction, I never knew I had one until I was 16 and even then I virtually ignored it. Why? I don’t really know. My family was very laid back about these things so maybe that’s it, maybe it’s because the allergy was to onion, raw onion and that’s something we never ate…I don’t know. As I got older the allergy increased and I became more aware of it and found myself having symptoms even with cooked onions eventually taking onion and then garlic and all other vegetables in this family out of my diet. I’m very grateful to my OH as he’s not a big fan of onion, he does like a little garlic and sometimes comes home to breathe garlic over me due to a work lunch he’s enjoyed but not often, this causes me no problems thank heavens.

I’m anaphylactic to the onion family, this means my throat swells up and I have been rushed to hospital on a number of occasions. I remember one time in particular when I was working a very short drive from the Alfred Hospital in Prahran. I’d bought a lovely lunch from one of the food places downstairs from work, I made sure to tell them not to put onion in it and took it back to work to sit in the lunchroom. I am very grateful my boss decided to sit there as well. My throat started closing up, a fact I ignored for as long as possible until it got too hard to swallow and I must have started making noises, my boss looked over at me to ask if anything was wrong and I must have croaked out something. Croaked, yes, my voice was going. She promptly put me in her car and took me round to the hospital, by the time I got there I had absolutely no voice and I’m glad I’d been able to brief her as she was able to then brief the hospital. They put me in emergency and kept an eye on me putting me on oxygen and I presume they gave me some medication but those details have gone from my memory, I do remember feeling very shaky the next day. Eventually my OH came in and took me home. I did complain to the lunch place the next day but they denied everything and I backed off. If the same thing happened now I’d be keeping my food so I could take it back to them and show them, as well as making a formal complaint in writing and if that got me nowhere I’d then complain to the council. I keep thinking how that could have killed me and I am very lucky to have had a good boss and to have been so close to the hospital.

I can eat a little garlic now and save it for really special occasions.

This week is Allergy Awareness Week and it’s also National Volunteers Week so it’s fitting that this week we launch our Blog Hop hosted by Mishaps and Mayhem of a Glutenfree Life, she has signed up for Mr Linky to keep everyone together and we even have a badge. It looks like this:

Here’s the html code for it:

<a href=”http://s18.photobucket.com/albums/b144/Suzpol/AandI/?action=view&amp;current=OFC.png” target=”_blank”><img src=”http://i18.photobucket.com/albums/b144/Suzpol/AandI/OFC.png” border=”0″ alt=”Photobucket”></a>

and the image code:

[IMG]http://i18.photobucket.com/albums/b144/Suzpol/AandI/OFC.png[/IMG]

so you can include it if you’re joining us.

I’m also announcing the opening of a Facebook page for the #ausallergy chat among other things. You can find it here. It’s a little bare at present as this is only the start of its promotion.

The other thing I’m hoping to announce is a restaurant review site specifically aimed at people with allergies and intolerances. It’s being created by David in his ‘spare’ time so I can’t be certain when it’ll go live but so far it’s timetabled for next week.

Mia wrote a little piece a while ago discussing how upset she was with people who talk a lot about their changed diets without actually having a diagnosed allergy or intolerance. It was only a little piece and received only a few comments, the last time I looked there were 578 comments, not too many at all. It echoed around the web and so many people wrote about it on their blogs. #ausallergy, our Twitter chat for discussion on all things allergy and intolerance related, was jumping with anguish and indignation. Many people misunderstood her intention and thought she was upset about anyone who looked like they might be ‘fussy’ about food, others thought her rant was ill informed and others felt she was doing a disservice to people with ‘real’ allergies and intolerances. Interesting.

I read her opinion piece and two pages of the comments with three other pages I might or might not get back to reading them, it’s a lot of reading. There was much discussion and one of the things that stood out in my mind is that it’s hard to know which expert to trust. One person said one thing and backed it up with medical evidence, someone else promptly said the opposite and backed it up with medical evidence. And how do you know who is an expert? What are they an expert in? It can be hard to be diagnosed with allergies or intolerances. Some of them don’t have a specific test, I had the breath test for both fructose and lactose but I think I’m also intolerant to raffinose (the sugar in soy, among other things) and there’s no specific test for that the only way you find out is by trial and error

I am allergic to the whole onion family, there wasn’t even a hint of this until I was 16. I’ve never really liked onion so I avoided it when it was served as a vegetable and only ate it when I had to, we never ate it raw. I was at a friend’s place and they served a salad with raw onion. I had an anaphylactic attack, I didn’t make a fuss, I probably should have gone to hospital but my family didn’t fuss about those things. I survived and over the next few years I had a few more attacks and was eventually diagnosed as allergic. Quite some years later I finally complained to a gastroenterologist about some bloating, while being seen for very low iron levels, and was diagnosed with lactose intolerance and fructose malabsorbence. They gave me some information and the penny dropped, I’d probably been lactose intolerant since my early teens and possibly even before then. (I don’t really want to admit this, but I probably had undiagnosed lactose intolerance for about 30 years.) There is the suspicion that the reason I have fructose malabsorbtion is because the lactose intolerance remained undiagnosed and untreated for so many years. I have other allergies and basically, eating out is challenging.

My family was aware of allergies and other food challenges. I have a sister who is anaphylactic to fish and some nuts and my great-uncle was coeliac. While we were aware of the problems surrounding the allergy we weren’t aware of the lengths my great-uncle probably went to with regard to a gluten free diet. My Mum has a great gluten free cake but she didn’t realise she had to be extra careful with the ingredients, making sure there were no crumbs from other ingredients around and making sure each ingredient was gluten free. She did have a clean kitchen so the baking implements were probably clean of contaminants but there’s the extra mile coeliacs have to go to in order to ensure they don’t get ‘glutenated’ and sick. My great-uncle ate the cake quite happily and never complained but that doesn’t mean he had no ill effects from eating it. What I’m saying is that even in our family, which understood about these things, there is that extra level of understanding that we missed. If you’re interested it’s a Chocolate Nut Cake, don’t bake it, it’s addictive!

Another issue raised was that some people have these diets but don’t stick to them. How annoying, to have someone tell you they’re not eating yeast and then to down half a dozen beers! Actually, that’s not a good example as I’ll explain but it’s one of the ones mentioned in the article. Allergies are ‘easy’ as you can’t have any of that food, but are they? Intolerances are a different matter. Logically, an intolerance means you can ingest a certain amount of that ingredient before you start having problems, some people have a lower level of intolerance than others and can only have a smidgeon while others can have a much higher level before the symptoms begin. Take lactose for instance. Some people can’t have any while others can have hard cheese or even yoghurt. I can have some hard cheese and sometimes I can have some plain yoghurt, if I want to treat myself and have a coffee with milk I’ll take some Lacteeze tablets a few minutes beforehand and this can minimise the symptoms. I can’t do this every day as there’s still a build up so it’s an occasional treat when out with friends or family, I often have black tea as that causes less problems.

Let’s go back to the beer, I’d love a beer right now! I’m not going to talk about the yeast but the wheat it’s made from. There is a list of safe foods for people with fructose malabsorption (ones which should be okay all the time) and ‘safe’ foods (ones which can be eaten in moderation), and a list of foods which are not safe and should never be eaten such as onions, apples, pears, honey and a number of other foods. It’s the accumulation of these ingredients that causes the problem, it might not be the tomato you had with lunch, or the piece of chocolate afterwards but it might be the piece of bread which tips you over, yeast has received bad press over the years so you might blame the yeast when in actual fact it’s the fructose in the tomato, the chocolate and the wheat. I’ve simplified it dramatically but you can find more details about the FODMAP diet on Sue Shepherd’s page. Everyone is so different, I know a young man who can’t have a trace of wheat whereas I can have a couple of slices once or twice a week before I have trouble. If I know I’m going to be out with friends or family I’ll have a very strict diet for a couple of days beforehand so I can have a piece of cake and a coffee (with Lacteeze) or a sandwich with normal bread.

If you’re interested in further reading here are some blogs of people I know or have been recommended. Nellbe is coeliac so her blog is normally about living without gluten, she has some yummy recipes. I wasn’t going to recommend Sarah Wilson until I read her article on gluten intolerances, it’s really good and really well written. Here’s a nice article on living gluten free on Play, Eat, Learn, Live. My Fructmal Girl looks good and has some information about what it means to have a child with fructose malabsorption. Kate Scarlata looks good but I don’t know why she’s using apple without adding glucose to make it FODMAP friendly. Most of the blogs are about living with coeliac as that’s been know about for so much longer, fructose malabsorption is still fairly new.

I don’t know about you but I think this is much too long.

The other day my attention was drawn to Holly in this video. She has an itch, it’s not any old itch but one that doesn’t go away it covers her whole body and very little helps. I know how she’s feeling as I was her, I had that itch and it was very hard to cope.

The itch is everlasting, scratching doesn’t help and often makes it worse, leaving it doesn’t help. It is hard emotionally whether you leave it or scratch it. The worst places used to bleed or ooze pus all over my clothes and sheets. I used to use a lot of topical cortisone to help it heal and that possibly caused other health issues. The cortisone only helped very briefly as putting it on made the itch worse, I think it was the rubbing.

I tried so many things. I had to be careful with water as that made it worse, putting ice on the affected area helped until it warmed up again but I had to put the ice in a bag as the liquid made it worse. Sometimes the ice would numb it until the itch went away but not very often. Slapping the area sometimes helped for a while and putting pressure on also sometimes helped. If the itch was on the top of my foot I could stand on it with my other foot. In my teens an allergist once suggested a bath with pinetarsol in it and I tried that but it made things worse, I think I was allergic to it. I seem to be allergic to a lot of things that state they’re hypoallergenic.

One day it was much worse than any other day and I went to the doctor as I hadn’t had much sleep for several nights due to the itching. He gave me an injection of cortisone and that helped tremendously but I had to go back for a second one and that’s when he sent me to an allergist. This doctor had some interesting ideas some of which even worked, this is one of them. I don’t recommend this lightly as it’s a rather drastic intervention but it has worked.

This allergist put me on an immunosuppressant. He started the treatment with a very low dose and gradually increased it until things had improved. I stayed on that dose for a few months before he commenced reducing it. That was several years ago and to this day I still have some itches but nothing like I had before, it’s now under control.

Warnings about this treatment

It wreaks havoc on your immune system for the duration of the treatment and for some time after. You need to be really careful of your health, making certain you eat carefully, exercise properly, get enough sleep and avoid people with illnesses. It’s as if you’ve got cancer and you’ve been blasted with chemotherapy, you’re likely to get every illness going and you’ll get it worse than anyone else. I got lucky and it made me better than I’d ever been but that generally doesn’t happen.

You need to have regular blood counts before increasing the dose. I had a blood test every week for the first month or two and had to ring up to get the results before going onto the next level. After that it was reduced to every two weeks and later on reduced to every month. I think I went back to fortnightly blood tests when I was coming off the meds but I’m struggling to remember. I think they were checking for kidney or liver damage but I’m really stretching my memory on that one.

There are other more specific warnings with each immunosuppressant drug on the market. I did not go into this treatment lightly and do not recommend it unless the medical personnel is very experienced. I was an adult with kids when I had this treatment, there are warnings about the drugs causing foetal harm in pregnancy.

I’ve been persuaded to post my recipe for pie and seeing as today is pi day today is a good day for it.

This can be changed to fit whatever ingredients you have on hand, originally it was for leftover chicken but I often put mince in it.

Pie

Ingredients:

Make a white sauce using margarine, gluten free flour and milk of some variety. Almond milk gives a good flavour and makes it lactose free. Can’t give you any idea of quantities as I’ve never measured anything. You probably need a cup or even two cups of sauce.

Turn off the heat and beat in two eggs. Add in the pepper.

Mix in the mince meat or leftover chicken. If using raw meat I cook it in the sauce for about 10 minutes (stirring often) to make sure it’s cooked first before putting it in the oven. You could brown it first, but I’m lazy.

Add in any vegetables you’ve got. They could be leftovers or fresh. I generally add peas and corn directly from the freezer. It’s all to taste.

Put it in your pie dish or casserole dish, cover with pastry. Kill it by putting a cross in the middle with a knife and decorate with leftover pastry at will.

Put it in the oven on about 190°C for about 45 minutes or until cooked.

One of my little recipes people can’t get enough of. It’s hard to give amounts for this recipe as it depends on the size of your eggs and the size of the fillets, also I don’t measure anything. For three fillets I’ll use two or three eggs and that depends on if I want some pancakes with the leftovers. You can make small nuggets or big nuggets or even slice thinly and make into schnizels.

Chicken Nuggets

Cut the chicken fillets into the size you want.

Break eggs into a shallow and broad dish, a soup bowl is good. Beat them.

Fill another bowl of the same size with Besan flour, add salt and pepper to taste and mix thoroughly.

Warm the oil in the frying pan. I pan fry these so I only use a couple of teaspoons of oil at a time.

Dip the chicken pieces into the eggs, then into the Besan flour mixture.

Fry them gently until cooked. You can cook them partway then put them in a dish in the oven to finish cooking, it uses less oil.

Put the plate on a table and stand back while the hordes attack.

Pancakes

You’ll likely have leftovers of the eggs and Besan flour. Mix them together with a teaspoon of Baking Powder, then fry them as regular pancakes. Don’t use any more oil for these.

Lactose free, gluten free (if you’ve checked your Besan flour is gluten free). Besan flour is made from Chick Peas.

It’s been way too long as we’ve been back from New Zealand for over a month but I’m determined to write this post. It’s about the resources we found while over there.

There were four main supermarket chains all had a some range of gluten free products including decent bread:

• 4 Square
• Countdown (I wonder how many New Zealanders came over here in the ’70s and ’80s and were totally confused by the programme on ABC TV called Countdown)
• Pak ‘n’ Save
• and another one I didn’t visit or write down the name of, I will remember the name in due course and edit this list then

We found various chains who make gluten free products:

• Herbert Adams
• Burgen make really good bread
• Vogels bread is almost as good as Burgen
• ‘Ntolerance (an allergy and intolerance shop in Auckland, but we didn’t need to visit them as the selections everywhere else sufficed)
• KB’s Bakery (they seem to have 15 bakeries around Christchurch but also do mail order, they’re linked with an allergist, Dr Rodney Ford, and have information about Coeliac and Gluten on their bags)

Every restaurant and almost every cafe we went into was wonderful about allergies and intolerances. We had a really nice pizza on a gluten free base with only the toppings we chose from Hell Pizza, I’ve since discovered they’re starting up in Australia and have two restaurants near Brisbane. La Porchetta’s were also good, the pizza was on a gluten free base and really nice, the service was better.

We had a fabulous meal at Nuffield St Cafe in Auckland, it was so good we went back the following week and they remembered us. The first time we were there the chef had accidentally put avocado dressing on my gnocchi, realised what he’d done then cooked more gnocchi for me, he was most apologetic via the waitress, I suspect he gave me more gnocchi than I should have received. I had the same dish the following week with no problems, it was very tasty. The service was fabulous, they worked really well as a team, constantly coming over to see if we needed anything and being very solicitous about our water glasses, we’d mentioned we’d been up Mt Rangitoto that day and were suffering from the heat. They had free wifi which we forgot to use.

One thing I didn’t see was information about other allergies and intolerances. The restaurants were lovely and I only had one problem in the three weeks, my OH told me I wasn’t clear but the waitress had poor English so I’m not sure what the problem was. I did manage to find one shop in Auckland before we left, but by the time we got to Auckland we’d seen so many gluten free options and had so many problem free cafe and restaurant experiences I quite forgot to go there.

I had very few food related problems during the three weeks and actually came back in better condition than when we left home. I found that rather strange as we did a lot of travelling and I ‘cheated’ on my diet on far too many occasions.

I’m not terribly good at writing regularly on this blog and I apologise to those regular visitors who come to read some pearls of wisdom. Sorry, but I don’t have pearls of anything I do try to write useful information but that doesn’t always happen. Today I’m going to write a little about our little Twitter chat #ausallergy.

It started out almost a year ago as a little idea. I knew it wouldn’t work if it was just mine so I tried to find someone who could co-host it with me. Nothing much happened until a blogging conference in August last year when I had the idea that it would be a brilliant time to approach specific people about it. I did my research, sent some people messages and we all met up at various times during the day. Enough of them liked the idea and so we discussed it on Twitter and within a few weeks we started. My co-hosts are brilliant, they cope through everything. When I started a class on that night, when I went overseas, they just got on with it and kept it going making it bigger and better than I could have imagined.

They changed the time to a more approachable time for people with small children (I forget what bedtime routine is like for these families, it’s been a long time since I’ve had to put small children to bed). Vanessa is organising an #ausallergy dinner.

It’s been awesome watching people’s reactions to #ausallergy. I’ve forgotten who said what but someone called it an ‘hour of sanity’. Everyone seems to be very excited to be able to share their problems and just dump the load of allergy or intolerance problems they have with people who understand. We seem to have more coeliacs than anyone else but I’m sure that will change over time.

Last night we briefly discussed the possibility of importing bread from New Zealand. They have the best gluten free bread and many other gluten free cakes. It would be nice if Burgen could start producing their gluten free bread here but they tell me they won’t as they take gluten free too seriously and they don’t have a gluten free manufacturing site to make it. Pity that.

Anyway, join us at 8:30 AEDT every Tuesday night for #ausallergy, the only allergy and intolerance Twitter discussion in Australia. We don’t bite, but we do talk.

I’ve been reminding myself I’m only fructose malabsorbent and not allergic to it. What is the difference? Today, it feels like none as I’m in a very bad way but I’m not sure I can totally blame the fructose as my period started on Saturday and that always exacerbates any symptoms I have. Not realising it was about to start I had a jaffle for dinner on Saturday night with regular bread made from wheat flour.  It was only two slices and I’ve managed with that before but things have totally changed this month. As I’m also in the early stages of the menopause rollercoaster I can’t tell you if it was just the fructose and my period or if that changed things more.

Basically what I’m really saying is that today sucks, big time. I’ve spent so much time on the toilet and expect to spend more until my bowels are completely empty. It almost feels like I’m prepping for a colonoscopy.

One of the discussions we’ve been holding on the Fructose Malabsorption Support Group – Victoria has been about regular wheat bread and how much people can tolerate. One of our number was told she could have up to two slices of normal wholemeal bread (especially if it was by Bakers Delight with no grains), naturally a number of people have been trying this out with varying results and much excitement. This was not Bakers Delight bread and although I was careful to only have two slices the results have not been good. I have managed to have two slices of bread or even a half a bagel without any ill effects before so it could be the bread or the circumstances surrounding it.

I was going to write so much more but my brain’s gone ga ga and I must go back to the toilet. I’m going to let the toilet be my friend today.

Mum bought these at her local supermarket.  She’s desperate to find something I can eat.  The box states they are gluten free, dairy free and vegan, they are made in Australia by Leda Nutrition.  They do have some fructans so I do advise you to try them with care if that’s a problem for you.

Leda Chocolate Rum Balls

I did enjoy the flavour and didn’t have any problems with them, but I was careful for the rest of the day.