Final diagnosis

I haven't posted for a while, as I have been undergoing a bunch of tests (all the fun ones, of course). I have, surprisingly, tested negative for fructose malabsorption and lactose intolerance.

The final diagnosis is that I am sensitive to these foods due to ongoing gastroparesis.

As a result, I no longer identify strictly as a fructose freak, but still have to eat like one. Go figure!

Still, it is nice to have something concrete to work with, and the doctors hope that within a couple of years I will be able to eat like a normal human being. Here's hoping!

So, I won't be posting regularly anymore, in case you were wondering, but I'll still be keeping a close eye on all things fructose freaky, so might see you around the blogosphere.

Cheezly soy-free!

It's about time, but there is now a soy-free, dairy-free cheese on the market available in Australia! Cheezly have developed a new product that finally fits the soy-free bill. Like all non-dairy cheeses, it's not amazingly nice, but I've tried it myself grated over pizzas, and it's sufficiently cheese-like to make me happy. I don't think I'd eat it un-melted though...

I've seen Cheezly soy-free in a number of health-food shops and you can also order it online (just google it).

I can't believe it's not cheezly

The naturopath's plan

It's been so long since I wrote my last post. Apologies! I've been busy with the band and life in general. Over the past few months I had been reading the fructose malabsorption support group's pages with interest. People seemed to be having a lot of success with the dietary enzymes Digest Spectrum. People were able to eat onions of all things, with no reactions with the help of these 'magic' pills. I was excited. After much trepidation, I decided to give it a go. Here's what I wrote on the group wall:

Hi guys, I was very excited to hear that some people are having success with Digest Spectrum. I have tried it twice now and have had some problems!

The first time I tried it I had tacos - re-fried beans with corn tortillas, avocado, cheese and lettuce. There was some onion powder in the refried beans. The digest spectrum seemed to work, no bloating and my stomach was flat.

The next day I had leftovers, and within half an hour I was into full blown symptoms - fatigue, pains, bloating, the works. I figured I'd overdone it with two attempts in two days.

Two weeks later I have tried it again, this time with more moderation. I had a small amount of couscous salad (no onion), a tiny bit of meatball curry (with onion and garlic) with plenty of rice to soak it up, and a cupcake. Within a few hours I had pain, headaches and fatigue. Today I have pain, fatigue and headaches.

What am I doing wrong? Should I be taking this more slowly? Or should I be taking glucose with it as well? I had such high hopes and I'm a bit devastated.

Any help would be much appreciated.
Kate

So that's an epic fail for me. With multiple responses to sift through, and still no answer to my body's ongoing struggles in sight, I decided to bite the bullet and go and see a naturopath and work from the ground up. I'll let you know how it goes! I hope that this work is the beginning of my return to good health that is not dependant on pharmacy medicines, and that views my body as a whole vessel. I'm sick of being mostly ok (thanks to a highly restricted diet). My energy levels are still so low, and one food mistake can throw the whole thing out. It's time to start aiming for feeling fantastic. I hope I can achieve this one day.

Being brave

I've been reading in my fructmal support groups that we need to try not to be quite as restrictive with our foods lest we lose any small tolerance we have! This makes sense to me. I have gotten more sensitive to food in general since starting on the low fodmap diet, and it seems prudent to slowly introduce some of the less sinister ingredients. I'm not sure if I will ever get up the guts to try onion or apples, but we shall see. Fingers crossed!

Anyway, today, with that in mind, I decided to try some sourdough bread. This was GOOD sourdough bread from Dench bakery, and I had two slices with cheese (took my lacteeze), ham and tomato. I also had a cafe latte (thanks again lacteeze). I had that at lunch-time, and did not seem to have any problems. Maybe a tiny bit gurgly in the stomach, but that's not surprising. I also had two chocolate biscuits later in the afternoon, the first I've had in over a year! Perhaps I went a bit overboard, but I was feeling confident after the sourdough. I'm still feeling mostly fine. I'll keep you posted! I'd love to hear other stories of bravery if you've got them!

The 'nobody gets it' rant

Last night I went to Northcote restaurant Chowhound with some friends for a meal. Northcote is one of the more 'gluten-friendly' areas in Melbourne, so I was confident that the staff would be able to accommodate for me. I'm not a call-ahead kind of person. I'm a musician, and I thrive on a chaotic 'routine' (or lack there-of). So I risk it.

Looking at the menu, I scanned, as we freaks do, for the one or two things that are close enough to what I can eat, hoping the kitchen would be able to make the additional necessary changes. That dreaded moment came. My turn to order. God, I wish they [waiters] would all move closer so I don't have to shout my dietary needs to the whole table, let alone the whole room. Anyway, three dishes on the specials board were looking optimistic. Fish with bok choy and potato in three different variations.

"Um," I said, "I can't have onion or garlic. It's a dietary condition. Could I get the kitchen to make me one of those dishes without any onion or garlic? I'm happy for them to make it up, I'm not fussy at all, I just can't eat onion or garlic, so I'm happy with whatever they come up with."

Confusion sets in. Poor girl. Handles it quite well at first. "Ok, soooo, you really don't mind so long as there's no onion or garlic? You don't care which fish?"

"No, whichever is easiest to do I'm fine with. Just some fish with bok choy and potatoes is fine, but no onion or garlic. It's not a taste preference, it's a dietary condition."

"Okay. So is it, like, a death allergy or just a little thing?"

"Errr, well I won't die if you give it to me, but I'll be very unwell..." (This is getting a bit weird.)

"OH!" she says, poking a finger at me across the table, "you're not one of those people who, like, oozes it from their pores for 24 hours after it are you??"

There is an awkward silence at the table. She has clearly overstepped the line. Her black-and-white view of food allergies is verging on insulting, and her over-familiarity surrounding sensitive issues is just plain naive.

"Err, no", I say firmly, refusing to go any further with this conversation. She becomes aware of her accusing finger, and drops it.

"Ooh, sorry, I probably shouldn't point at you, should I. Ok so, you were having the beeeeef, and you were having the tagine, and you were having the risotto...." she trails off back into checking the others' orders.

Let this be where my rant begins.

ARRRRGH! I am left feeling embarrassed, and not even 100% sure she is going to order me the right thing in the kitchen. I am SO sick of having to explain myself, and I can accept that in a country town, or an international restaurant that it might be a bit difficult to order, but in Northcote of all places, the gluten-free capital of the world in my opinion, how can waiters not be trained in this essential area? Surely I'm not the first person who's asked for changes to their meal? At what point do I have to explain exactly what will happen to me if I get the food. Isn't it enough that I ask for it without? AAAARGGH!

Oh, I could go on, but I realise after my stint overseas that us freaks have it amazingly good in Australia. After continually receiving onion in my dishes that had been clearly asked for without whilst in Germany, Melbourne is a veritable retreat! Sigh. I think this issue will only get better when my body gets better. The best I can do is smile as its happening and occasionally let off steam to my internet friends every once in a while when it gets too much.

I DO feel much better now. Thanks for listening.

Zucchini Slice

Sorry for the lack of posts recently. I've been crazy busy running my band Elephant Eyes. I saw this recipe on the yahoo fructose malabsorption support group and it looked so good I just HAD to share it. I am moving house so won't be able to bake for a little while, but if any of you get around to it please let me know how it goes!

Zucchini slice

Ingredients:
1 small grated zucchini
2 cups lactose-free milk
1/2 cup g/f plain flour
1/2 teaspoon baking powder (gluten free if needed)
1/2 cup grated cheddar cheese (if you are REALLY lactose intolerant like me you might want to take some lacteeze with this or leave the cheese out)
4 eggs (beaten)
3 chopped sundried tomates
3 tablespoons fresh herbs e.g parsley and basil
salt and pepper to taste

Method:
Beat eggs, add milk, flour, baking powder, then all other ingredients. Mix well. Pour into greased square cake tin. Cook on 180 degrees celcius for 40 minutes. It will rise in the oven and then fall again once cool. Enjoy with a salad.

This recipe is low FODMAP, lactose free and gluten free.

Thanks to Sharon from the group for this recipe.

I've been around the world just to come back here

I'm back! And exhausted. Travelling with fructmal is insanely difficult. I hate flying now, and have vowed never to go Air Asia again (the turbulence is killer for sensitive stomachs). Anyway, it wasn't all bad. I was very excited to find that I was able to eat rye bread while I was in Germany! I suspected that this might be so (my dietition told me they grow rye differently there - apparently Australian crops are contaminated with wheat) but I was excited to find it was true! So I merrily enjoyed buying rolls from normal sandwich bars around Berlin with no problem at all! I also travelled with lacteeze tablets, and these were absolutely essential. It just meant that I could order more things without having to try and explain in a different language.

So, to summarise my trip, my worldly findings were:

1. There's no such thing as gluten-free in London. In a general sense anyway. I've found in Melbourne that pretty much anywhere you go at least knows what gluten-free means. In London I was stared at blank-faced when I asked for soy milk or gluten-free food.

2. Food allergies barely exist in Germany. According to many of my waitresses, if you don't want onion or garlic in your food, it must be because you don't like it. It never occurred to many of them that I was asking because it's what I need not just what I like. I cannot count the number of times I ordered food without onion or garlic and it was in it, plain as day. Not cool.

3. I can eat German rye bread. Yay!

4. Lacteeze tablets can save your life. They're like a life-boat in your pocket (or bag).

5. Planes don't like me. Especially cheap ones.

6. Doctor sounds a lot like 'adapter' in Malaysia. (This is a long story, essentially I sent for a doctor at a hotel I was staying at, and got a power adapter instead. Funny, but distressing.)

7. I can handle sauerkraut

A ridiculously large Frankfurt-style pork chop with sauerkraut

Thus concludes my trip report.