Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; In trouble

Ok so it's been a couple of months since i started the no starch diet. I have just started to see some good results. My pain has significantly reduced and at random periods throughout each day, im sometimes pain free.

Now the problem....
My mum HATES me on this diet. She wants me to eat normal food, something i just cant do. She told the doctor about the diet and he is the same. He completely dissmisses the diet and said "anorexia kills people, ankylosing spondylitis doesn't"

He also said "I'm HAPPY with Ankylosing spondylitis., i dont want you getting anorexia." What a ******. My mum was agreeing with him and i was basically getting slaughtered at the doctors. I was furious. Hes trying to get me off the diet, i have to get blood tests every week, my weight monitored. I need help urgently, otherwise im in big trouble. I need to put on weight. what can i do?

What can i take to school for lunch etc... by the way ive lost 5-6 kgs.

macadamia nuts are almost starch free (0.7 in the starch content food list) and are loaded w/ fat and calories. mix up some of those or some almonds w/ some chocolate chips, raisins and some coconut for a healthy and fattening snack on the go (delicious too by the way). Some people eat coconut oil by the spoon full. Beer is super fattening (only if you're of legal age!) Get some of Kiwi's coconut flour treat recipes for easy muffins and snacks. If dairy doesn't bother you, then eat ice cream and cheese, make your own milkshakes and add some protein powder. If you are physically able, I would recommend hitting the gym and doing some weight lifting (heavy weight/low reps). It will boost your appetite and add muscle.
I have no problem maintaining my weight on NSD, but I understand many people do. I suppose it may be an issue with some of us that we are unable to fully absorb and utilize what we eat.
I understand why your mum is concerned about you if you are dropping weight and the doc is telling her you are becoming an anorexic. Perhaps you should let her browse this website and see if that helps her understand. Good luck.

How about a packet of that lovely new zealand butter every day? There used to be a dutch guy here who ate it by the cupful to put on weight.

Hi Seb,

<sigh> Time to get used to the fact that for every NSD *believer* there will be 100 skeptics...

For a start, let's see the reality here:

1. ALL mums worry about their kids' welfare - we are programmed to care... so she is concerned that you are losing weight. This is an issue that WE can help you and her address. [box ticked] (Growing boys need to be seen to be thriving and then their mums will lay off the worry)

2. What your doctor said was (a) insensitive and (b) COMPLETELY INCORRECT!!! Anorexia is NOT a disease where weight loss is the primary issue - it is a psychological disorder where the patient suffers from low self esteem and self loathing, leading to punishing themselves by not eating.

3.My guess is that right about now, you might be feeling a bit chuffed at starting to battle the Beast that Lurks Within - this shows real strength and is something that YOU should be applauded for!

I suspect the only thing that you *loath* is living with chronic pain - now *that* truly sucks!!!

As an allied health professional, I've gotta say that you don't sound at risk of Anorexia anytime soon! Rather, you sound as if you are doing what you are meant to start learning to do at 16 - taking charge of your own destiny and exercising your right to an independent mind!

Jbirdus has some good suggestions. As a mum of teens myself, might I second the suggestion that your mum joins KA, to see that we are a BIG crowd of rational and intelligent well-educated multi-nationals, NOT a bunch of wacko alternative way-out kooks!!! If *my* teen wanted to do something radical-sounding that they had read about on the internet, *I* would be wanting to make sure it is safe.

Remember that GPs have to know a little about *everything* medical and it is more than reasonable that they will have NEVER heard of this link b/w AS and No Starch. Start them on a conversation about Klebsiella pneumonie and molecular mimicry and see how quickly they are out of their depth!

It sounds as if you have had a Real Breakthrough, and that is all the proof that they should need. NO PAIN for some periods in the day - WOW!!! This is not what we were hearing from you a couple of weeks ago...

Now - what to have for lunch? Salads and a protein source - tuna, eggs, olives, sliced cooked chicken, bacon (nice 'n fatty), cheese if you can do dairy - or what about 2 protein sources in the salad? I would add nuts too... Dressing (that Kato mayo or home made vinaigrette with virgin olive oil or coconut oil) and you should be full AND well-fed from a nutritional PoV.

How about making little mini quiche things in muffin pans? Veges and tuna/bacon with eggs, herbs etc - add some FULL FAT cream to >> the calories...they are YUM!

Get your mum on board by teaming up with her to cook some of those sweet tummy fillers from the Recipe section here @ KA.

Tell her she can PM me anytime - I do the NSD AND I'm a caring mum of teens AND I am a health professional and a generally conservative person - not one to follow fads... I have consulted the #2 Ebringer Brother (rheumatologist here in Melbourne, Aust) and HE IS A DOCTOR, not an illiterate loony with a weird theory - this NSD is the REAL DEAL!!!

Hang in there Seb, and get your mum on board, cos SHE will see that you are taking less meds and are happier and able to be more active like the old Seb that she used to worry about, before the hurting Seb came onto the scene.

Remember the old saying: "The proof is in the pudding".

Heigh Seb - Agree with Louise H, JBirdus and Bilko. Get your mom on this site. At the moment she does not understand the basics of the diet. As for the Doctor...sigh. Most NEVER understand the diet... But to say that he is *happy with AS* and to suggest that yuou are anorexic, beyond the bounds of comprehension. Get him onto the NSD forum as well. Print stuff off fo him? Hmmmmm. That might help. Select pertinent info, print it off and give it to him to read up on. Don't forget the kleb input. That's important. Louise will prob help you here, in picking out the best of the info. Don't make it too much, or he'll feel swamped! (Yea. Go drown him in good information... :)) haha)

Get her on board here, and just see the NSD forum and the yummy snacks that can be put together. AND when you've got your inflammation really under control, you can then start to introduce some starches back into your diet, but slowly. Keeping a diet record to check on reactions.

You'll see, your mom will soon be convinced.

Go well hon. You are doing great. Glad to hear the inflammation is coming down. Terrific good news.

Hey Seb,

I'm sorry you're getting a rough time of it, especially now you're starting to see some good results. However, I guess they are only worried about you... Mums worry about their kids *anyway*, let alone when there is something like AS going on. A lot of people do find that when they change to the NSD weight drops off without really trying. Perhaps if you can slow the loss down and even maintain a steady weight, in conjunction with improvement in your symptoms, they might be more accepting of the diet? Especially if you're on pain meds and can reduce use of these, as they can often have nasty side effects.

Has your mum been on KA? If she understands why the diet is helping you, that there are lots of others out there doing it and can ask us questions about it, she might feel more at ease. We'd be happy to answer any questions. Having an understanding certainly helped my friends and family to know that there was a good reason to give the diet a try. Are you able to help your mum in the kitchen? If she's making things that are safe for you, as well as feeding other people 'normal food', it can be a challenge and does require a lot more planning and effort.

I know there are lots of other people here whose doctors have dismissed the role that diet can play in managing symptoms, so he isn't the only one. But anorexia is a condition that includes things like thinking that you're fatter than you really are and a fear of gaining weight, as well as being underwight for your age and size. I bet that those first 2 certainly don't apply to you, so that was a pretty stupid thing for him to say. It helps to be able to work with your doctor, so getting him to understand why it is working for you and that you'd like to continue as part of your treatment plan for your condition would be good too!


Have you managed to get your hands on some coconut flour? There is a place in Wellington called Nature Foods that stocks both the flour and coconut oil.
This is their website here: http://www.frot.co.nz/nature/foods.htm
I'm pretty sure you told me you lived in Wellington, so you could go in and see them. It might help your mum too, to be able to talk to people who will have an understanding of your wish to make diet a part of your control plan. Some coconut flour baked goodies should really help. As well as helping to fill you up and being chocca full of fibre, the recipes also call for lots of eggs and butter or coconut oil, so should really help with boosting calories. There are lots of recipes to be found on this site, but you'll also get a recipe sheet with the flour. Although some of them use ingredients that aren't suitable for the NSD as they're targeted at other sorts of diets, there plenty that are ok or can be easily adjusted. A couple of hours in the kitchen doing some baking would be enough time to make several different things that you could then package up and have in the freezer or tins to grab as you need it during the week. The baked goods help you feel like you still get to eat some 'regular' looking food too. I love the muffins, and would make these plain. That meant that I could have them sweet or savoury, depending on how I was feeling or when I was having them. If I was having them for breakfast I'd cut them in half and toast each side for that yummy crunch, then spread with butter, jam, and top with yoghurt. For lunch they'd be a side to my salad, or I'd use them to make mini or open sandwiches. The biscuits are great too, for a snack on the go.

There are also lots of recipes that use ground almonds instead of coconut flour. While you can get the little packets in the baking section, most supermarkets that sell stuff in the 'bulk bins' will also stock this. Or, if there is a 'Binn Inn' in your area, they will have it too. I haven't tried them before, but there are recipes for almond flour 'bread' too, which makes a loaf you can slice.

The coconut oil that you're likely to find in the local health food stores will most likely have been refined and deodorised and tastes disgusting, so avoid that if you want to try it! I have it by the teaspoonful as an energy boost when I need to. If eating it straight off the spoon doesn't appeal, then having it with some dried fruit (such as stuffing a date with it) is another tasty way. You can also use it instead of butter in baking or oil when cooking.


Having a number of small meals during the day, or at least some substantial snacks in between meals, and making sure you have something to eat before you start to feel hungry could help too. As jbirdus as said nuts are friendly food, and have lots of good oils in them - walnuts, blanched almonds, macadamias, brazil nuts. A small handful with raisins or other dried fruit or chocolate is a nice portable snack. I also love toasted pumpkin seeds too.
If you are doing ok with dairy I'd recommend things like greek yoghurt and or chedder and tasty cheeses, as these will give you more energy than the regular types (I love that vintage chedder.... ). Vanilla ice cream with berries.... yum!
When I cut out dairy for a while I was using coconut milk on my morning 'cereal' (dried coconut with toasted pumpkin and sesame seeds, nuts and some fresh or dried fruit). I like the taste, and the coconut oil in it is great for energy. One can would last me most of week, especially if I also used a bit of juice (grape or cranberry were my favourites) over the 'cereal'. When having this I'd have a second breakfast too, to get some protein in to help keep me going - some eggs (poached, fried, boiled, scrambled) , or bacon and eggs. Mmmmmm. When I started having yoghurt again I'd still sometimes use coconut milk too!
For salads you could try adding extra olive oil to salads, even if you've already put some vinegrette or mayo on. Make sure you've got protein in there - tuna, cold roast or grilled meat, cheese, egg or bacon, or a combination of things! Top with some nuts, or toasted pumpkin or sesame seeds for some extra crunch.


I am sure that lots of other people will have some other great ideas too. But I really think seeing if you could get your mum on side so you can work as a team on this would be a great start. I'm sure she'd *love* to see you with reduced pain levels, and able to do more of the things that you loved being able to do before this monster reared its ugly head.

Phew! This ended up longer than I intended. Hang in there Seb, and keep us posted with your progress. We're cheering for you!

Hello Seb
WOW what a massacre at the doctors!
Right I second what everyone else put and will add:

Prof. Ebringers qualifications are as follows:

Alan Ebringer B.Sc, MD, FRCP, FRACP, FRCPath., Hon FRSH.
Professor of Immunology, King's College London & Hon. Consultant in Rheumatology, UCL School of Medicine, Middlesex Hospital, London.

Phew!

Notice the "MD" bit and also that Professor trumps doctor!

You can show your Mum that Prof Ebringer is no quack that's for sure (he wears a white coat and his writing is illegible and everything!!!).

I belive that there is a period at the beginning of the diet (weeks or months) where your body needs to adjust to the new diet without starch - it needs to work harder too because there are no slow-release energy foods being consumed. It is my belief that your weight will start to even out soon and then maybe your Mum and doctors will stop panicing about your weight loss.

I've got lots more to say but don't want to overwhelm you.

Will come on again later with some more info that you might find helpful.

In addition, if there are any specific questions you would like to ask Prof Ebringer if you could - what would they be?

Take care and try not to let that doctor coax you into thinking that we are all nuts and this diet is dangerous. It is your best chance of preventing damage to your body, hon. I promise you.

Hi, seb:

Don't forget to eat CHEESE and the safest is hard (aged) style and also eat sweet desserts with every meal--the opposite advice from Atkins. Meringue, marzipan, homemade macaroons with dark chocolate morsels. Eat dark chocolate morsels with raisins and raw almonds or walnuts. Always save room for dessert and You will stop losing weight.

I lost weight on the NSD at first, but have gained it all back and more; it is the body gradually adjusting from carbohydrate to fat and protein burner.

And Louise has very good perspective--anorexia is NOT a simple problem and You will not voluntarily or through Your eating habits get this psychological condition! Tell Your mom that the doctor can be replaced, but she cannot, so You need her on Your side. Educate her with success stories here at KA and point out that she does not have to live in Your body--but there are many much more expensive options than diet that are much less successful.

You will succeed--we'll be pulling for You!
John

Hey Seb, everyone here has already offered great advice.

Just a question, you may have already said but I can't remember....do you have Carol Sinclair's book The IBS Low Starch Diet? I ordered mine at Paper Plus...you can probably also do the same at Whitcoulls or whatever bookstore is near you.

If she reads it (it's a small book) it may help here get a better understanding of the diet.

Hello Seb

You are a growing lad and probably burn off lots of calories.
Not sure about how often you eat - but make sure you snack a lot between your 3 main meals of the day. This will get some extra calories in and keep you on an even keel energy wise.

You can carry around all sorts of snacks to munch on in between classes when you are at school:

Nuts: Pistacio, almonds, macadamia
Cheese: Hard cheese or cream cheese spread onto something eg celery stick
Meat: Rolled up ham, leftover cooked meat
Dried fruit: handful raisins, apricots etc
Fresh fruit
Veg sticks
Coconut flour: cakes, brownies, cookies etc

Hope this helps a bit, Seb.

Get you Mum on here pronto - I, and I'm sure others would be more than happy to "talk" to her about anything she likes!