Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Cold hard facts

Ok, so i've been getting alot of crap from my mother recently. She 'knows it all' and apparently I know nothing because I'm only 17... she's been telling me that she's had 'back' and 'stomach' problems her whole life. So she decided to get the gene test. Before she told me she was 100% positive she had the gene. The results came back and she was negative. I litteraly cracked up. The funny thing is, she's still giving me a real hard time for coming home from school, not being in the top football team at school (at least i'm playing for god sake), not spending as much time with my friends etc. She keeps telling me that I'm way too obsessive with the diet and i'm being misleaded.

She says that she's watched my behaviour change. She says it changed after I found out i had the gene. I've heard her tell people she thinks it's 90% in my head, 10% pain. Honestly, in her head she knows it all, and she will agree with any professional. I refuse to go to doctor now because I'll sit there getting gang bashed for losing weight and being on a diet that 'won't help'.

Can someone please help explain how bad this disease really is, i've tried everything.. she seems to think i should be able to just push it into the background............ and she says that i'm not an 'extreme' case. She has no idea....

Ironically, my sister has recently been diagnosed hla b27 positive after many gut problems.. I care for her but honestly they are both so closed minded. I asked her if she wanted to try the NSD and she said she didn't want to join an anorexic cult.

Sorry if this sounds like an insult to all of you. It's not. You've all helped me so much. I have 100% faith in the diet.

Seb

Your mom sounds scared to me. Her little baby (sorry, but you will always be her baby, even when you are 50 years old) has some wierd disease with no cure and he is treating it in a wierd way. She has no control and no way to help. That's pretty scarey for us mom-types.

Peace,

Jeanne

Aw, that's hard for the both of you. Moms just want to make everything all better. It's not easy; she just wants you to be well, full stop.
Maybe some of the research here could help here, like the youtube video of Dr Ebringer. There is also quite a bit of information online regarding people who have autoimmune diseases benefitting from a "paleo" diet, which basically seems no starch to me for the most part: meat, fish, vegetables, and fruit that is low glycemic.
Best wishes for you both to find your way in this issue. Sounds like there's a lot of love there. : )
Jan

Actually, tho'..... This aint' no Anorexic Cult!!! I wish it was! OK, so I'll admit I lost maybe 5 kg when I first started on NSD a year ago, but then I got wise, and now altho' I haven't regained that 5 kg, I AM NOT LOSING ANY MORE WEIGHT - and, er, I could do with losing some - bring on the Anorexic Cult, I say!

More sensible reply later Seb - a tough situation, to be sure - but your mum sounds as if her mind is MADE UP, and NOTHING you say or do will change it...

to you

Your mother is right on some things Seb, you should spend more time with your friends. Maybe more than before. And you should keep on making sports - but on this i agree with you - you don't need to try to be the best - you only need to do it. And yes Seb, it's true you've changed - we all do ! When one finds out that ones life should be a mess most of the time because of this disease probably one will not start jumping from joy...

And it's true - we all look almost normal - most of us we use to walk normaly, talk normaly, sit normaly - so people think we are normal ant it's all in our heads.
People will tend to understand those with visible damage more than will ever understand such people with AS.

Sometimes people will lookt at us and think - why the hell is he complaining that much? where's that pain he's keep telling me about? [*bleep*] him. Even our own famyli will do it sometimes. It's not fair Seb, but it's reality.

She's scared Seb, because of the other problems you people have there, because she sees how you're losing weight, because doctors tells her something else that you tell her, and who should she believe seb? you? a 17's kid or a man with 17 years of schooling behind him? A doctor will thell her that you are at your growing age and that you need all the nutrients to have a normal body.And that's true.

Maybe making a pact with her: go together to a nutritionist - and establish a suplement plan to help you in your growth. Or maybe you should talk your father trough it, i remember that he was more suportive. Some of their concerns are legitimate seb, try answer them. And about their ignorance and their small wiched words - ignore them. It's the best thing to do.

And Seb, Keep on Walking ! You're waling the right way !

Hi Seb,

Your mum sounds like my parents. They were so much against the entire diet thing. They basically believe in english medicines. According to them you take pills and you will be fine.

But then, last year when I was in the worst of my pains. Left my job and became almost crippled. Then they realised the magnitude of this disease. Then they saw the effect of this diet on me. Now they swear by it. My Mom started to do some changes in her diet as well. My sister is also HLA B27 Positive. Last month my dad called me and asked me to talk to my sister and try to convince her for the diet.

I guess it will take some time for you mum to get used to it.
I wish you don't have to go thru all the pain I went to convince them.

You are doing really fine here. Sports is a distant memory for me at the moment. I am still recovering. Can't run or climb stairs like I used to.

Be patitent with your mum. And yes, go out with your friends more often. You are really young and I wish you all the best.

I think this might have to do with everyone in your family changing. The AS is a catalyst for the change. I know my mom was NOT someone who could even stand to make Kraft dinner in the kitchen so she would definitely had been against the diet (and probably would have came up with a bunch of excuses why). She told me by grade 5 or 6 that I was old enough to make my own lunches so I brought Little Debbies to school every day.

Since the ship is brought into a storm, everyone has their opinion on how to deal with it. The problem is, everyone deals how they're comfortable dealing and usually don't open their mind to other ways in the midst of a storm. They deal and find out how well they did and make adjustments for the next one (if they're smart). If the diet has helped you, you need to prove that to them. Also you probably need to handle all of the concerns they have about the effects of the diet as well. Its unfortunate that we all have been brought up to believe medical doctors at their word every time- they're only human- and often times the effects of western treatments are more dangerous than the disease. We even watch an actor play one on TV and are more likely to buy the product they're holding! All this being said, I have tried the NSD and am trying it right now. I don't know how I could have screwed it up for over 2 years, but I may be going the medical route in the near future... do what works, with the least amount of side effects.

Its hard sometimes to honour our parents. But we must. Be thankful that you have one that's involved in finding a solution. Respect and honour are 2 different things. Sometimes I have such a hard time with my mother's opinions and thoughts but in the end all that really matters is where her heart is.

I reread my post and I think I may need to clarify, I LOVE MY MOM! The post actually kinda looks negative but I couldn't ask for a better mom!

Truly,

that is funny as . ive been doing NSD for about 4 months and my weight has been 92-93kg for the last 3 of those 4 months.

Hi Seb, it's so unfair that you dont have support at home with the NSD- it's hard enough.
Maybe your mum could read Carol Sinclairs book about the NSD, or the success stories about the NSD on KA. I dont have AS, and I always appreciate it when my husband explains to me how much pain he is in- like on a scale of 1 to 10, then your mum will know exactly how much you are suffering, as we don't hurt and its easy for us to forget and assume. Sometimes we are due to have visitors and my husband goes to bed- I get annoyed and think he's being rude- when if he had said I'm in too much pain for visitors right now- that would have made it easier to understand. Also consider that sometimes she will be angry that you have AS and upset, that does not mean she is angry at you. Perhaps she is just frustrated about making different meals/cost etc- not angry at you but annoyed about the extra work and without seeing the long term benefit she wont understand its worth it. Make a deal that you will give the strict NSD a go for a certain length of time and if she promises to support you and you don't see relief that you will visit a doctor and try something different. Perhaps she could contact some of us NZers here directly- phone email etc. I cant say much about the diet but I would be happy to explain about your pain etc and perhaps she also needs support. PM me if your interested. Regards, emily