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Posted By: seb Snacks etc - 04/07/10 02:12 AM
Having trouble finding snacks that my family can afford. We're not poor but alot of things seem to be really expensive and are out of the question.

My main snacks are:
- dark chocolate
- grapes
- Pineapple
- Raisons
Running out of options a bit.

Macadamias are like $5.00 per 100g which is crazy
Walnuts are like 3:00 per 100g which is also pretty expensive

I don't think i can tolerate dairy because i had a crazy flare after having greek yoghurt and starch free ice cream.

Saw fudge was 0 in the starch content list, is this ok to eat or not? Too much sugar id imagine.

Would appreciate any tips,
Cheers
Posted By: SJLC Re: Snacks etc - 04/07/10 06:09 AM
I like homemade "jello" made from unflavored gelatin, fruit flavoring (e.g. orange oil), honey, and raisins. Honey is easier to digest than table sugar, which is why I start from plain gelatin and use that as sweetener. You can make it stiff and cut it in cubes so it's finger food, like the "Knox blocks" my mom used to make for us as kids.
http://www.recipezaar.com/recipe/gallery.php?rid=281669

If you're interested guess I could come up with a recipe, though I don't usually measure everything when cooking.

Also there's one more thing you could try for dairy, which is pure goat or sheep cheeses. That could help if allergy to cow milk causes the flares (rather than just the lactose). Those ain't exactly cheap though. Hard cheeses have less lactose than soft cheeses if you do want to try.
Posted By: Alinus Re: Snacks etc - 04/07/10 07:34 AM
Originally Posted By: seb
Having trouble finding snacks that my family can afford. We're not poor but alot of things seem to be really expensive and are out of the question.

My main snacks are:
- dark chocolate
- grapes
- Pineapple
- Raisons
Running out of options a bit.

Macadamias are like $5.00 per 100g which is crazy
Walnuts are like 3:00 per 100g which is also pretty expensive

I don't think i can tolerate dairy because i had a crazy flare after having greek yoghurt and starch free ice cream.

Saw fudge was 0 in the starch content list, is this ok to eat or not? Too much sugar id imagine.

Would appreciate any tips,
Cheers


some have less options than you smile the sollution is to try and spend more time at home and make homemade stuff to replace those you must buy.
Posted By: kurumi Re: Snacks etc - 04/07/10 11:12 AM
Seb,

The home made jelly cubes are a great idea! Making them yourself means that you can adjust the sweetness to your own taste, and if you're wanting to be careful about how much sugar you're getting you can cut it back too. That reminded me that I've made jelly and mixed it with desicated coconut and topped it with some coconut milk as a snack. But if you're buying packet jelly do double check the ingredients, as some brands also use dextrose, and it is better for you to avoid that. Gelatin has some really great stuff in it for healing the gut so will be a good addition to your diet.

I know coconut flour does seem expensive, but it is well worth it as a little does go a long way. If you can get some of that it will really open up the variety of snacks that you could make. Time to get creative in the kitchen! smile Can you get mum on board for this? Tinks recently posted here her method for making a rough flour from desicated coconut, as she couldn't find any where she lives. You could give this a go in the meantime if you've got something you could grind it with. Desicated coconut is pretty cheap and easily available. Someone else posted recently on making your own desicated coconut which made me wonder if drying the store bought desicated coconut out a little in the oven or even in a frying pan, cooling it and then grinding it would help you make something that is closer to the flour you buy. But you'd need to toast the coconut very carefully, as I think it would be very easy to burn it. You could then make muffins and things, that would help fill you up. Tinks, have you got any pointers for Seb for baking with your home made flour?

Grinding your own coconut flour
Making desicated coconut

To make things dairy free, when butter is required, you could try replacing it with coconut oil, shortening, lard, or probably even Kremelta (although coconut oil would be better than this).

I've had a quick look through some of the recipes for things that are dairy free (or could be done dairy free) and that don't use coconut flour. But, lots of these use ground almonds, and these can be a little on the expensive side too. You can get the little 'Tasti' brand packets in the baking section, or check out the bulk bin section at the supermarket.


Almond Poppy Crackers
Another great website to check out for recipes and ideas is Elena's Pantry , she has a sesame version here, and if you search on her website has some variations on these. Topping crackers with some meat or slices of boiled egg, cucumber, and mayo would be a great snack.
Use Tortilla to make an open sandwich.
Kiwi's slice
Almond butter biscuits Have you got a food processor or blender? If so, you could have a go at making the almond butter as that would be cheaper than buying it in NZ.
Granola bars - This one has no butter, and as Laurie did you could use honey instead of agave syrup. But DO NOT use sunflower seeds... they do test starchy. Replace with more pumpkin, almond slivers or sesame seeds.
Another variation granola bar , but leave out the spices.

For some other dairy free savoury snacks, veges dipped in mayo or mayo mixed with a hard boiled egg (like when you make egg sandwiches, but leave out the pepper!) or tuna and mayo will give you some fat and protein to help keep your energy levels up. Or egg or tuna and mayo on crackers...

smile
Posted By: Tinkerbell Re: Snacks etc - 04/07/10 11:24 AM
Hello Seb

Ok, cheap starch and dairy free snack options...

-Rolled up ham / cold meat
-veggie sticks
-coconut flour baking you could substitute vegetable oil for butter on some recipes I'm sure. For muffins, I usually use veg oil instead of melted butter anyway.

Will try to get brain in gear and think of more things... In someways the dairy bit is trickier that the starch. Need to get brain thinking along different line with the dairy obstacle.

Well done for sticking with it Seb, you are doing great. It's a rotten disease alright. I hope you get out of your flare again soon.

I know what you mean about the cost of food. You don't have to be "poor" to feel the pinch of eating a specialised diet. Starch is such a cheap-filler food and takes some replaceing does't it?

Take care,
Tink
Posted By: Tinkerbell Re: Snacks etc - 04/07/10 11:35 AM
Hey Seb
Kids are going to a party in a mo - haven't got any more time for a couple of hours - but will pop back on later this afternoon.

Coconut flour can be hard to get hold of or very expensive, so wanted to tell you about another idea...

Back soon!

Tink
Posted By: light Re: Snacks etc - 04/07/10 12:55 PM
Seb,

If you have intolerances to dairy, ghee is MUCH safer. It has no lactose and is casein free (the two things that usually get people into trouble with dairy). Some people consider it more of an oil than a dairy product. In MHO, it even tastes better. In India it is considered a medicinal food and is obviously very fattening (HOOORAY!) You should be able to get away with using it for cooking.

Good luck,
Stacey
Posted By: mcm Re: Snacks etc - 04/07/10 02:12 PM
Hey seb - i've cut out dairy too, it does cut down on snack options.

Coconut flour is expensive but goes a very long way as kurumi pointed out, i'd be lost without my coconut snacks right now
I also figure i'm not spending on all the other foods i used to eat/buy so I can allow a splurge every now and again.

My usuals snacks are pecans (can get fairly cheap here in Georgia, USA), almonds, raisins, cranberries, dried cherries.
grapes, kiwi
Plus the baked almond and coconut goodies,
hard-boiled eggs,
Meatballs- ground turkey, hamburg and/or pork mix with egg and herbs or chopped spinach, celery whatever you like or plain. They keep in fridge for quick bites.

I've started grinding my own almonds for almond flour baked goods in my coffee grinder, don't know if you have a source for bulked dry goods but that can be cheaper.

Homemade jello great idea - i'm going to give it a go myself

celery sticks
cucumber rounds with seeds taken out and skins off
I love bell pepper strips but understand these can aggravate arthritis (i only eat on occasion myself)

Are melons in season? there's that option

Fudge is usually made with dairy - i've not found a dairy free option- maybe try making with coconut milk since its thick, but its also high in sugar and if you try to substitute or lower the amount there's a good chance it won't set. Another sweet option are meringues and macaroons - its only egg and sweetener, honey works well and i've made them without sweetner and just the dried coconut (really good dipped in melted chocolate).


Best wishes and know you're not alone, mary cay
Posted By: seb Re: Snacks etc - 04/08/10 12:49 AM
Thanks for all the help everyone.

I'm feeling ALOT better today and hope it lasts. I've had so many up and downs on this diet but i think im starting to understand what is triggering these flares. It's like you're a detective sometimes, lol. I think i found out why i flared recently. I ate quite alot of roasted salted cashews, a kiwifruit that was very starchy, and an avocado that was also starchy. I think the cashews were the main problem, they were quite high in starch on that list.

Thanks for the tips, i need some coconut flour desperately!! I'll get my mum onto it when she gets back from my sisters gymnastics competition, they're away for a few days.

Cheers,
Seb
Posted By: seb Re: Snacks etc - 04/08/10 12:51 AM
Stacey,

Sorry what's Ghee?
Posted By: Shane Re: Snacks etc - 04/08/10 12:59 AM
Seb - Ghee is also known as clarified butter in these parts:
http://en.wikipedia.org/wiki/Ghee
Posted By: Kiwi Re: Snacks etc - 04/08/10 03:13 AM
Originally Posted By: seb
I think i found out why i flared recently. I ate quite alot of roasted salted cashews, a kiwifruit that was very starchy, and an avocado that was also starchy. I think the cashews were the main problem, they were quite high in starch on that list.


Yep, me and Jon made the same mistake with cashews early on in the diet. It took us a good 3 months or so to finally figure out what was and what wasn't starchy....we were still weeding things out for quite some time.

I used to make Jon these little sandwich bags with Nestle dark chocolate drops, roasted almonds and sultanas or raisins. They were a good lil snack to keep him going but he couldn't gorge out on almonds coz he seems to have trouble if he eats too many.

Avocados can be dodgy....very hit and miss. Sometimes OK, sometimes starchy. So unless you wanna test one each time it's kind of a hassle.

Regarding jelly....you can buy some jelly mixes at the supermarket that are OK to eat. Can't remember the brand name off the top of my head. You have to check as some of them have wheat based flavours (it says on the box 'contains wheat products' and then other flavours in the same brand are fine.
Posted By: seb Re: Snacks etc - 04/08/10 06:37 AM
Ok thanks,,

Was wondering if mixed herbs are safe?

Cheers
Posted By: Tinkerbell Re: Snacks etc - 04/08/10 06:55 AM
Hello

So glad you are feeling a better today!

I tell you what, nuts are giving me jip at the moment. I think I've been eating too many and not chewing them enough. I'm having problems digesting them. You are right about the cashews being starchy too, unfortunately.

Like Kurumi says, I can't buy coconut flour here and so I kind of grind my own... if you can get the flour and it's not too pricey fine, but if not let me know. I was thinking of taking some photos and doing a little PDF to give you a better idea on what to do and what it looks like.

Basically, I take normal (cheap) desicated coconut (the dried looking stuff in a packet) and pop about 3 tablespoons at a time in my little coffee grinder. It starts of making a high pitched sound when it grinds, but when the pitch starts to change lower (after only a matter of seconds) that is time to stop quickly! Otherwise the coconut starts to release it's oil and can break the grinder! The result is fine enough to push through a sieve with a spoon (mainly to get rid of lumps).

Hope this helps.

What do you like the sound of most out of the following:
*Coconut and raisin slice (you can cut this and spread butter and jam on)
*Coconut chocolate brownies
*Coconut cookies
*Coconut muffins

These are the recipes I have madea (and had success with) so far. I was thinking I would try your favouite one with an alternative to butter and tell you the results I get!

Let me know ASAP and I will start one for you.

Take care, Seb.

PS does anyone in your family like baking? Or do baking much? I hope so, because it could really help you!
Posted By: Kiwi Re: Snacks etc - 04/08/10 08:29 AM
Originally Posted By: seb
Was wondering if mixed herbs are safe?


Plain dried green herbs are usually fine. Just watch out for seasoning mixes combining herbs & spices eg Gregs or MasterFoods mixes like morrocan seasoning, lemon pepper, garlic salt seasoning etc. These are just a couple of examples but most seasoning mixes have either wheat starch or rice flour in them. Always read the ingredients!

Forgot to say, even if you're off dairy you should generally still be OK with butter as it's pretty much just fat. Well, Jon is OK with it anyway and he can't have other dairy products (yoghurt, milk, cream, cottage cheese, cream cheese, ice cream or too much hard cheddar cheese). I guess you'll have to experiment on yourself smile
Posted By: Dotyisle Re: Snacks etc - 04/08/10 02:19 PM
Hello Seb,

Unfortunately diet is expensive... offset is I do not have medical/drug costs like I used to.

For me my staple snacks are raisons and walnuts. Walnuts expensive here as well.

You can always look at veggies... if can tolerate carrots and celery they make OK snacks as well.

However... nuts/raisons really fill me up pretty good.

Tim
Posted By: seb Re: Snacks etc - 04/09/10 03:05 AM
Thanks for the comments everyone smile

I have to say, i'm feeling even better today than yesterday. Good signs i think. I dont want to get my hopes up too high but i think remission is a possibility now. I'd say my pain is probably 3/10 today which is very good without medication and in the middle of the day. Recently i have been almost pain free every night but during the day has been the hard part. I hope it continues - i felt like this for about a week a month ago and then i flared multiple times. I'm starting to get the hang of knowing what i can and cannot eat. Was just interested to know if the raisons i'm eating are ok. They have sugar on them and almost taste like lollies. Also have vegetable oil.

I definately need some coco flour.

Can the stuff you make with coconut flour increase your weight?

Cheers,
Seb
Posted By: Tinkerbell Re: Snacks etc - 04/09/10 12:00 PM
Hi Seb

Glad you are "feeling even better today than yesterday." That's great news!

Further to Kiwi's reply - if butter is generally ok on no dairy diet, the baked stuff should be fine for you! Hurray! To have some sweet snacks you can eat would be great for extra calories.

Not sure about te raisins with sugar on them - I just get the normal plain one's - I would think the plain one's would be better if you are eating quite a lot of them - I'll let the others advise you on this one.

Take care,
Tink
Posted By: Kiwi Re: Snacks etc - 04/09/10 11:28 PM
Originally Posted By: seb
Was just interested to know if the raisons i'm eating are ok. They have sugar on them and almost taste like lollies. Also have vegetable oil.

I definately need some coco flour.

Can the stuff you make with coconut flour increase your weight?


What kind of raisins are those? Never heard of them. Best just to get plain raisins or sultanas as Tink mentioned.

Yes, eating coconut flour products can help you gain/maintain your weight.

www.zenian.co.nz
Posted By: seb Re: Snacks etc - 04/09/10 11:53 PM
Okay.

The brand is Sunbeam 'australian raisins.' I'll just get the normal ones (sunmaid i think.)

How much coconut flour do you think i should get?
Posted By: Kiwi Re: Snacks etc - 04/09/10 11:55 PM
Hi Seb... those raisins are fine I buy those too. They don't have sugar added...just the natural sugars in the fruit.

Just get 1kg of coconut flour to start...that will last you ages

smile
Posted By: seb Re: Snacks etc - 04/10/10 12:09 AM
Oh really? I thought it was sugar tongue4

Thanks Chelsea smile
Posted By: seb Re: Snacks etc - 04/10/10 01:07 AM
Chelsea are thyme leaves ok?
Posted By: Anonymous Re: Snacks etc - 04/10/10 02:48 AM
Originally Posted By: seb
Chelsea are thyme leaves ok?


can you iodine test a little bit?

http://www.taste.com.au/how+to/articles/725/thyme



"women would also often give knights and warriors gifts that included thyme leaves as it was believed to bring courage to the bearer" http://en.wikipedia.org/wiki/Thyme
Posted By: Kiwi Re: Snacks etc - 04/10/10 03:41 AM
Originally Posted By: seb
Oh really? I thought it was sugar tongue4

Thanks Chelsea smile


Oh sorry, I didn't read your post properly....you said you bought the Sunbeam ones...I buy Sunmaid and they don't have anything added.

The Sunbeam sultanas are fine..they only have some oil added.

Thyme leaves should be OK...generally green herbs are.
Posted By: Tinkerbell Re: Snacks etc - 04/10/10 06:59 AM
Unless there's a super deal on bulk buying, I'd say just buy one bag for starters. I don't buy coconut every week that's for sure.

Coconut is super fiberous - don't go crazy eating tons and tons of it every day and make sure you drink plenty of water.

It's really easy to get fixed on one particular food when you are on a restrictive diet, others have said this too.

All things in moderation is my advice.

I'm a fine one to talk though... when I've baked a batch of something and have not had anything for a while, I do tend to go a little crazy and have more than I mean to!

Good luck with the baking - let us know how you get on.
Posted By: seb Re: Snacks etc - 04/10/10 08:14 AM
Thanks Tink
Posted By: seb Re: Snacks etc - 04/10/10 08:15 AM
Jet,

I tested but wasn't sure because the herb was black thats why i asked for a second opinion. I wasn't sure thats all
Posted By: Tinkerbell Re: Snacks etc - 04/10/10 08:30 AM
Seb

I've heard someone saying to mix black foods with a little milk to test - because milk is starch free and lightens the colour of the food so you can see any changes in colour.

Hope this helps you!
Posted By: seb Re: Snacks etc - 04/10/10 11:43 PM
cheers tink laugh

Wierd, i had 3 prememium mince beef burgers and i definately reacted to them. In a bit of a flare. Is it possible to react to red meat?

By the way thanks heaps to everyone thats helped me out smile
Posted By: Anonymous Re: Snacks etc - 04/11/10 12:34 AM
was it made in your kitchen or buy them pre-made Seb?
it wouldnt be the beef mince (red meat) but the filler to make the burger (mince patty) STICK together, causing you the problem. Can you make your own "beef burger patties" with mince and egg (egg will hold the patty together).
Posted By: seb Re: Snacks etc - 04/11/10 02:49 AM
yeah Jet i made the burgers home made, thats why i'm a little confused. I just took the beef mince out of the packet, made them into burger shapes, added Thyme leaves and salt, then cooked them. Might double check the Thyme.

Cheers Jet,
Posted By: inkyfingers Re: Snacks etc - 04/11/10 10:41 AM
From my pantry: "Sunbeam Australian Raisins": contain raisins (99.5%), vegetable oil.

These should be fine, Seb - I buy them often - some batches are 'drier' than others (been stored longer, maybe???) and they have a granular feel to them - in fact raisins have always been a bit like this, since I was a kid - it's just natural sugars, nothing added, so they should be fine for you.

When you do some CCN flour baking Seb, just chop up your treats and freeze them. Then you can keep it fresh and just get out what you need. It is expensive eating NSD - but as Tim said - think what you are saving on Big Gun meds... And if you freeze the "Seb's special stuff" then the rest of the family won't gobble it up, thereby keeping the cost down.
Posted By: Tinkerbell Re: Snacks etc - 04/11/10 03:11 PM
Hi Seb,

Ok the beef burgers...

Did they have any additives in them of any kind?
Did you test them with iodine to check?
What did you eat with them?
Any sauce, dressings etc?

Let's see if we can narrow it down a bit...

I don't think you should have a problem with red meat if it has not additives in it. But I know you have had a problem with meat before, haven't you? Was is steak last time?
Try to think what else you have had with the meat.

I am having the odd flare at the moment - I think one time it was stress-related but the others have defo been what I have eaten. Things trip you up all the time! It's a minefield sometimes isn't it?!! You have to be a detective to figure out where you went wrong all the time!
Posted By: seb Re: Snacks etc - 04/12/10 04:09 AM
Tink,

I don't think the mince had addatives, it was premium mince beef. I didn't test it. I just had 3 burgers with Thyme leaves and salt added. My parents were out so i was lazy that night and didnt bother with a salad, sauce or anything.

About the Steak. I originally thought it was the steak that caused me the problem but now i think it was the greek yoghurt. That was the first time i tried greek yoghurt and the next day i was in a horrible flare.

Right now im starting to think that maybe it's the chocolate and macadamias. Whenever i avoid these i seem to get alot better.

It sure feels like a minefield! But yeah i have definately noticed an improvement.
Posted By: seb Re: Snacks etc - 04/12/10 05:49 AM
Update: In a horrific flare. I don't get it. It makes no sense.

The cranberry juice i tested is starch free so it cant be that. I had mushrooms, red pepper, lettuce and cucumber in my salad last night with chicken that had nothing on it....

Ive been eating raisons, dark chocolate and macadamias. Had a plum last night and pineapple. Bacon and egg for breakfast.. I just dont get it. The only thing i can point to is the dark chocolate and nuts but surely they cant put me in a flare like this. Frustrated right now
Posted By: Tinkerbell Re: Snacks etc - 04/12/10 06:51 AM
Hi Seb

Everything you mentioned is food that I would eat with no problem (except the nuts, I am not getting on too well with nuts at the moment - they can be very hard to digest). But others might have different views.

Could it be anything else that is setting you off? Are you very stressed out or anything like that? Injuries can set you off too. Or being unwell with something else.

So sorry that you are in a nightmare of a flare. I hope it dies down again as quickly as it came.

Hope you feel better soon.
Posted By: Alinus Re: Snacks etc - 04/12/10 07:43 AM
remove the pepper from you diet - it's has a big irritative effect for your gut (hence it increses the gut permeability).

better remove the chocolate too (if u can) - i had terrible times with it also.

and about the yoghurt - just read some threads here - some will stand it, some will get flares from it. So until u get better...

also be carrefull about lettuce (cabbage also). Test it. I had a big surprise last evening when i've tested some cabbage i bought from the super-market - it turned black as a coal...

better test everything.

A quesstion:
ever had problems with your gut? dihareea more than others? Constipation more than others? Or strange pain inside your abdomen? sometimes to your right, some times to your left or anywhere? Ever thought your somach hurts (but without that acid taste you get in your mouth?)
Posted By: jroc Re: Snacks etc - 04/12/10 08:30 AM
hey seb

i reckon it could be the dark chocolate. it has caffeine so it can have a similar effect on the gut to coffee. coffee gives me crook guts and so does too much dark chocolate. cocoa is also a bean and beans are high in lectins which can damage the gut.
Posted By: Kiwi Re: Snacks etc - 04/12/10 10:09 AM
Seb, I find plums (and most other fruit with stones eg nectarines, peaches, apricots etc) to be starchy most of the time.
Posted By: kurumi Re: Snacks etc - 04/12/10 01:06 PM
Also, you might need to cut out the cucumber seeds. If you cut the seeds open and test with iodine, they go black.... Yep, it is bit of a minefield out there... I hope you can knock this flare quickly.
hugss
Posted By: seb Re: Snacks etc - 04/13/10 02:47 AM
I'm not sure why i flared. Oh well, I'll keep fighting and see what happens
Posted By: finnari Re: Snacks etc - 04/13/10 05:05 AM
That's a good attitude. I'm sure reading all the responses could be somewhat confusing.

I think you have to have a degree of confidence in the food you put in your body. It may not have even been something you consumed that caused you to flare.
Posted By: seb Re: Snacks etc - 04/13/10 08:21 AM
Just got in a real heated argument with my sister and mum. They calling me a fussy eater, calling me obsessed testing everything, complaining about my weight, telling me to go on anti depressants claiming that im just depressed (im clearly not but no matter what i tell them they dont believe me). My sister said that her friend has a broken back and he still goes out and is happy. She thinks that a broken back is worse than AS, they're just clueless. My mum keeps telling me all this crap about when she had a really "bad" back. They have no idea. I got really fired up and pushed my sister off the chair she was sitting on and through something at my mum. I'm not proud of that but nothing i say gets through to them. I was in tears. They dont understand the pain. They say i have problems. This stress right now is definately making me feel worse. I know the diet will help me get better, im sure of it. Ive seen results. Im in a pretty bad state right now. I feel embaressed dumping this on all of you wonderful people but i just dont know who else to tell. I had to get this out otherwise the anger would just keep building up.
Posted By: Alinus Re: Snacks etc - 04/13/10 08:27 AM
hey seb, maybe you should convince you mom and sister to join and read this forum. Maybe it will help them understand you.

and be sure, even if your mum has now other opinion than you - she sure wishes you all the good in the world. so you should try talk to her and arrive at an agreement togheter.


PS. still waiting for answers for those questions i've asked you earlier.
Posted By: jroc Re: Snacks etc - 04/13/10 09:08 AM
hey seb

that really sucks. it is super difficult to do the NSD anyway let alone without the support of your family. i think alinus is right that maybe if they came on here and talked to some other people who know about the disease and have had success with the diet (someone like Kiwi) then it might help them understand. i'm no stranger to injury but nothing i've ever done has even come close to the pain of a good AS flare including falling through a window and slicing half my calf muscle in half. because people can't see any obvious kind of injury they assume that can't be that bad when really its one of the worst kinds of pain.

i hope you can get your family on board with the diet. good luck.
Posted By: Tinkerbell Re: Snacks etc - 04/13/10 09:36 AM
Morning Seb

So sorry to hear about your family row. That's pretty stressful for you, hon.

Just a few thoughts on the matter...

Sometimes if you are not getting through to someone about something, it's time to stop, think and try a different approach to the situation.

1. You could try not getting into a confrontational situation with your family but instead just start "planting a few seeds" for them to think about.

Eg. If your sister moans that you are lazy and not helping enough - you could reasonably point out how much you love your sport and you would not have stopped doing that for no good reason. Then leave it at that.

Another eg. If your mum is worried about you being a fussy eater - again point out that you have given up some of your favourite foods to help your AS and would not do that if it was not helping. Walk away and let this sink in with her.

2. If this gentle and reasonable approach does not work, then maybe it's time for some "shock tactics".

Using the broken back situation as an example, lay it out for them something like this:

A broken back will heal up and get better.
AS has no cure.
I have a choice of taking medications which have serious side effects that can seriously damage my health or I can commit to this diet which I know is helping me and has no such side effects.
If I do not do anything to reduce my inflammation and pain, over time my spine could start fusing together.
The pain is an arthritic pain and is agonisingly painful, even if you can't see it.
I need to give this diet more time to see if it works.
I need your help and support to give it my best shot.
If it does not work, I will try something else.

They are just some ideas - you can say whatever is true for you in your own way.

**** **** **** ****

If your family are aware of all the facts then there could be another explanation for their behaviour at the moment. Such as:

1. Denial - when you get bad news about someone you love, sometimes you don't want to hear it or believe it's true so you get angry at that person instead. They may need more time to get their heads around it.

2. Fear - they may have accepted what is wrong with you but are frightened for you and what is going to happen in the future. (I'm sure your parents must be devastated by the news, Seb. I'm a mother of 3 little one's - if they cut themselves my blood runs cold and I think I am going to have a heart attack).

This is hard on all of you, don't under estimate how worried you family are - they may show it in anger rather than by giving you a nice hug until they come to terms with it properly.

When I was a kid if I hurt myself my Dad would always shout at me not to be so stupid! I used to think thanks a bunch! I'm hurt and you are not comforting me but bellowing at me. Of course it was because he was worried and that is how it came out!

You have to work through your own hurt and anger too, Seb. It is not fair. It's not! There is no cure for AS and it sucks. You will get your head round it and I am crossing everything for you, that the diet works. Hang on in there, sweetie and never feel embarrassed about anything you think or feel - you won't be the first to have negative thoughts or hit out as a result of this disease.

Hope all this rambling is of some help or comfort to you. I'm sure you have calmed down and are feeling much better anyway.

Lots of love, Tink xxx
Posted By: seb Re: Snacks etc - 04/13/10 11:02 AM
Thanks Jroc,
Thats a perfect way of describing the pain.

Thanks Tink,

Your post has helped me heaps. I've calmed down alot now. Even though i'm now calm and try getting through to my mum and sister. It just doesn't work. It never will. They are not nice people. The only person i love in my family is my dad. He understands everything, he's so supportive of me in every way, including the diet. He's the nicest person in the world.

I have some big problems to deal with at the moment. My dad is on the verge of breaking up with my mum. It's tough. As bad as it sounds, i don't blame him. I guess its the way my mum was brought up that makes her like she is. My dad earns all the money in the family and if he leaves, i'm screwed. I'll be off the NSD thats for sure. I gotta keep positive though.

Alinus,
I'll reply when i can think properly. sorry
Posted By: inkyfingers Re: Snacks etc - 04/13/10 11:36 AM
Hi Seb,

Oh I feel for you buddy! hugss

Am too tired right now to write anything coherent, but just wanted to say "listen to what Aunty Tinks said - I'm with her on this one!"

Got some other stuff to say tomorrow...

Hang in there - you're not alone - this journey sucks, no matter which path you take... eek
Posted By: Tinkerbell Re: Snacks etc - 04/13/10 01:29 PM
Hello Seb
Bad as the situation is, I am not surprised by your explanation about what's going on at home. I keep thinking there seems more to it.
I don't know your family at all and would never comment about anything so personal and complex as someone's family set up.

What I will say is, that if your parents are splitting up this could go a long way to explaining how sensitive and inconsistant your AS flares are. Even if you do not think you are stressed out (or maybe you do) you are physically and emotionally under an enormous amount of stress living in that situation. Especially if you are not close with your sister.

You are such a strong person Seb, you are going to be OK, you are coping so well with your AS. You are so young and to have your family in jeapody as well I think you are amazing.

You never know what the future holds. Life can surprise you. Good things can still come out of bad.

Try to look after yourself - letting off steam on here is a great way to make sure you don't bottle anything up.

Remember there is a male only forum you can join if you want to talk to the boys in private. And you can PM me or anyone else any old time you like. Here is a good place to get lots of different views and lots of support though.

Chat again later,
"Auntie" Tink!

I like that, Louise!!
Posted By: Kiwi Re: Snacks etc - 04/13/10 08:12 PM
Hey Seb, I'm so sorry to hear about your family troubles. Boy, that is really rough. Tink has said everything so eloquently (awesome posts Tink) I don't really know what to add.

Chin up mate, we're all pulling for you.
Posted By: kurumi Re: Snacks etc - 04/13/10 08:36 PM
Seb,
I really feel for you... you really have hit a rough patch. The diet and flaring are difficult enough to deal with, let alone the stress of what is going on within your family. That sort of stress can really affect you more than you realise at the time.
It is late for me right now and I want to say more to you, but will do so in the morning. Tinks has given you some fab advice. Hang in there dude!
hugss
Posted By: seb Re: Snacks etc - 04/15/10 03:26 AM
Thanks Tink, Jroc, Kurumi, Kiwi, Inky and everyone else. I think i'd be in a bad place without all of your encouragement and support. I've read a few posts about diet not working for everyone and its a bit depressing. But i think the theory behind the diet suggests that it should work for the vast majority of people if not everyone. I've seen patches of success that last a few days where i have pretty low levels of pain so i think it will work, it will just take time, determination, positivity, and patience. I remember the first few days i started the diet and i wasn't too sure what to eat. I was effectively starving myself, not good i know but i was almost completely pain free. I still had stiffness but minimal pain. And now that i go back in time and look at my diary, i was eating alot of things that were off limits. I had a period of remission (sort of, low pain levels) and i ate a bag of salted cashew nuts. I then flared. I later discovered Cashews are starchy. So it makes sense.

I've definately seen success in patches. So i'll keep going and hopefully it'll just click. I miss feeling comfortable at school. I also miss hanging out with my friends and playing sport. The way i've been thinking about AS is to not fight the disease but to outsmart it.
Posted By: kurumi Re: Snacks etc - 04/15/10 09:26 AM
Originally Posted By: seb
The way i've been thinking about AS is to not fight the disease but to outsmart it.


Hehehehe.... yep. Seb, I know things are tough for you right now, but despite that you've got an amazing attitude. I have no doubt that you'll find a way. Hang in there! smile
Posted By: seb Re: Snacks etc - 04/16/10 12:24 AM
I've started getting gut pain. Does this happen randomly or after i've eaten? It has been happening after i eat dark chocolate and macadamia nuts. Does this show i can't tolerate these?

Cheers,
Seb
Posted By: bea_arthur_itis Re: Snacks etc - 04/16/10 02:06 AM
Wow Seb,I ate dark chocolate and walnuts today and felt bad.tummy kinda hurt..hmmm.weird
Shauna
Posted By: Alinus Re: Snacks etc - 04/16/10 05:44 AM
Hi seb.

there are many of us who do not tolerate chocholate (especialy the dark one since is full of cocoa, wich is full for lectints that can be bad for people with a disfunctional gut).

Same goes for most nuts.

You must be verry carefull at what you eat - keep a jurnal - note everything down. I think is a good method to check what can be wrong with your food.

All the food that triggers body response - like a bad tummy, bloating, randomised abdomen pain - i think you should avoid it, for the moment - even if it's not starchy. Not to speak of the food that gives you flares.

I think you will be able to eat those some time after you will be on this diet. As far as i read in this forum - most people are.

If it conforts you, I am on the same stage: darkchocolates and nuts drive my gut crazy. But i try verry hard to stay out of them.
Posted By: Tinkerbell Re: Snacks etc - 04/16/10 12:42 PM
Hi Seb

I find nuts really hard to digest too. If you don't chew them really, really well - which you usually don't! (I pop one in after the other)! They can give you a right old tummy ache.

I have eaten quite a lot of chocolate over Easter - milk and white (not dark) - I have tested with iodine, although I'm not sure how effective that is, and checked the ingredients carefully. I think I have found a couple of brands which are fine eg Lindt and Milka - but I have noticed that lots of other brands have got nasties in them like lectines and traces of soya, wheat and gluten. I only go for straight chocolate as well - with no nuts, raisins or anything else in it.

Hope you are OK, your list of foods which are fine for you to eat seems to be getting shorter all the time. It's hard work alright, isn't it? Hope you are soon back into your sports and feeling alright at school again. We are all cheering you on, here!

Take care of yourself and make sure you get plenty of headspace - I love going for a walk to clear my head. Indoors stuck in your room, things fester (I'm not talking about socks and leftover food!!) but outside in the fresh air and preferably somewhere where there are plants and trees and birds singing - you can lose yourself a bit and blow the cobwebs out of your head.

Chat soon,
Tink
Posted By: bea_arthur_itis Re: Snacks etc - 04/16/10 01:10 PM
Originally Posted By: Tinkerbell
things fester (I'm not talking about socks and leftover food!!)


You are so funny floor
Posted By: seb Re: Snacks etc - 04/17/10 10:20 AM
I can definately see a connection between food and AS. I think i'm doing everything right but after almost every single meal at dinner, my body responds after i've eaten. It's not a coincidence. I've been a bit lazy not testing everything i put in my salad so maybe thats why my body starts aching after dinner. Still a bit disapointed i havn't seen amazing results but i'll keep going no matter what happens or what anyone says.

Thanks for the words of wisdom everyone smile
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