diets

[Ballerina]

Hello there!

I just wanted to say, being totally new to this, that a diet that is glutenfree, lactosefree,
meatfree, coffeefree, sugarfree has helped me a lot. Three weeks ago I was asleep
all the time, I had no energy and felt really weak and ill. Also I had pain and I was very stiff in legs.

Now I feel much better! No pain, I have more energy, the joints are fine. Only thing
is I am still a bit tired and of course the dry eyes and dry mouth. Haven?t found any good eyedrops yet.

I went to a nutritionist who told me I must concentrate more on stomache, so he
gave me seeds and things for that and pills with yoghurtbacteria (bioAcid). I also had an
Omega3-oil and some very strong vitamine pill. He thought I would be fine after 3 months with this diet and those oils and pills...
Let?s hope so.

Today I rehearsed physically all day. It went well. I am grateful for every hour feeling "normal", whatever that is.
What about you? Does diets help you out?

Ami, dancer in Sweden

[beverley]

Ballerina,

I'm really pleased that your new diet has helped and that you have found someone who can give you good advice, but what on earth is there left to eat?  I'm a fisharian (like a veggie but I eat fish) and I used to detox by leaving out all the things you mentioned, but medically it was recommended you didn't do more than a month.  Are you intending to keep it up permanently?  If so, be really sure that you get a balance of proteins and vitamins as well carbs in some form or you will crash out eventually.

Good luck, hope it continues to improve your quality of life.

Beverley

[lynnmarie219]

Ami,

So glad to hear that your diet is helping you so much! I have eliminated most of the caffeine form my diet and don't eat much meat at all (almost vegetarian I guess...lol)....but I love my carbs and sweets! I am also diabetic so I need to be watching these better...but I crave them both....its been difficult!

Hope you continue to feel good! If it works for you....I say go for it!

[Ballerina]

Hello
My son has diabetes type 1 so I know all about that.

About my diet, I eat fish! And I will probably eat meat once a week in the future.
I need to look in special shops, but it?s much easier now to find alternatives.
Soyadrink, soyayoghurt is available everywhere.

The boring thing is the caf? situation. I once ordered shrimp salad for breakfast
and the lady serving me had to comment I was having lunch for breakfast, not knowing
what people have for breakfast in Asia. Could be fish, rice and veggies...
Traditional restaurants are also boring. Salas, salad, salad. 

Power to all of you.
Ami

[~elizabeth~]

One thing I'm realising about diet and SjS is the need to keep iron levels as high as possible. Having tried long courses every anti-fungal for my sore mouth and throat (plus zero sugar diet) without success, I'm sure the extreme soreness is due to anaemia (I've have periods of quite bad anaemia for many years, and I now realise these have correlated to flares). I'm not sure diet is enough to maintain iron levels on it's own (and supplement tablets aren't a viable option for inflamed GI tracts), but I think it's worth eating haem iron-rich foods at least a couple of times a week. This is important, as long-term anaemia can lead to physical changes in the mouths/oesophagus that aren't at all nice, and anaemia is a recognised symptom of SjS and most doctors seem completely unaware of the significance of this.

The other thing is to keep the mouth as neutral/alkaline as possible, to avoid irritation to mucosa and additional damage to tooth enamel. Avoiding acidic things completely isn't a good idea, as most fruit/veg come in this category, but you can neutralise your mouth with cheese, and/or bicarbonate mouth wash immediately after eating.

[Ballerina]

Elizabeth, thankyou!!

I have so much to learn.
When I had my first real flares this March I went to the doctor
many times and the only thing they found was anemi.
So I took iron pills, but I was worried there was something else.
I read anemi could hide many different diseases.

When I got really ill again three months ago with the same symptoms
I toom the iron pills again, but this time it didn?t help and the doctor
could not help me out. This is why I started to investigate on my own.

I have problems with mouth and eyes this weekend. I could not sleep this night.
Maybe it was the lemonwater? Too spicy food?
I will try the bicarbonate rinse.
Thankyou so much!!

ami

[~elizabeth~]

From a research paper I read recently, plaquenil treatment can cause haemoglobin levels to rise without additional supplementation, which suggests anaemia is part of the disease process (it often on symptom lists, along with reduced white blood cell count). My haemoglobing has been very variable (though Ferritin and Folate are always right at the bottom of the range), and I realise now the haemoglobin levels were going up and down with flares. Anaemia damages the mucous membranes, causing additional oral discomfort. I can't take iron supplements either as they cause me a lot of pain in my stomach, as my GI tract has showing signs of inflammation for a long time.

[Ballerina]

OK
Thankyou for sharing.
Ami

[BeckyG]

This is great! My doctor is wanting me to do the same diet.. but oh so hard to give up everything.  I am going to buckle down on Friday (as tomorrow is turkey day and there will just be too much temptation and too much feel left out if I dont at least enjoy with my family!) But fish was also recommended as a good meal- my problem is fish is expensive! Even here in Washington state its way more pricey than any other meat.  Besides vegetables and soy did your doctor recommend anything as alternatives? Or have you found anything you really like? Luckily I love vegies! But I also like me a good cheesburger! So this will be a very hard transition.  I know my doctor is going to have me slowly reintroduce things back into my diet one at a time in a couple months to see what effects my symptoms and what doesn't.  Is that something he wants to do with you as well? Or is it a total diet change? 

Becky

[Ballerina]

Hello
The rheumatologist just said I should keep doing what I am doing.
And said it is very important to avoid sugar to have healthy teeth.
The nutrition therapist told me to try this diet for 3 months and then I will come back to him.
The pain is gone with the wind and I have more energy!
He said I could eat chicken and fish. And that I could have a bit cheese on Friday nights.
In the future I might eat red meat once a week.
He told me to avoid every dairy product, also sheep and goat cheese.
It is the calcium that goes into the joints, get stuck and give pain, he said.
So I have soy milk, soy cream for cooking and soy yoghurt. I eat some extra fibres, yoghurt bacteria and seeds twice a day to get
my stomach working and heal. I don't know the Engish words??
Strong Vitamines, antioxidants such as Mighty Greens. A lot of green tea. Sencha, oulong, bancha, gyokuro,
macha. No coffee. Wine only once a week or less.

The fishliver oil contains omega 3, K2 and natto. It is called Lipolar Balans.
The evening primrose oil (capsules) is called Efamol. He said they were stronger.

The therapist acually wasn't too worried about gluten. He said fibres are more important to me.
But I've read on this list that most people with SjS are gluten intolerant and a new friend
with SjS told me to avoid it. Because I?ve been so weak I wanted to make sure to heal
as quick as possible. I have had problems with anemia so I want to make suremy
body takes up everything I eat. I was so afraid I wouldn't be able to dance and perfrom this autumn.
But I am doing fine.

Redbeats, yellowbeats, carrots, lentils, beans, nuts, chicken, fish, avocado, broccoli, zucchini,
eggplant, yellow onion, garlic, quinoa, brown rice, gluten free muesli, go get a book on rawfood!

Best wishes
Ami, Swden

[wallaby]

Just a little side note.  It is my understanding that your body needs Vitamin C to process iron, so it is always a good idea to increase both if you're having problems with anaemia.

[Ballerina]

yes, that is true! Vitamin C is in the strong daily vitamin I take. Thanx!

[Ballerina]

Hello again.

My rheumatologist does not encourage anything special, after talking to him today.
He says I can try on my own. I think I must change doctor or I will get crazy.
I will stick to my diet because I am so much better. I read books to help myself.

For breakfast I eat soy yoghurt with glutenfree muesli and some brown little hard seeds
that help your stomach a lot and also lowers cholestorol. In Swedish they are called linfr?.
In English?? I love coffee, but now I only drink it on Sundays.

For lunch I eat chicken, fish or eggs with redbeats, broccoli, parsnip, cabbage, carrots etc.
Same for dinner. I have a cookbook on raw food, but I eat hot food as well. Brown rice, qunoa.
Sushi, but the nutritionist I met who helped me more than the doctor told me to take it easy with white rice.
Only one glass of wine in weekends. Then I take some small pieces of goat cheese. (I love cheese)
Only once a week. I eat some fruit in between meals. I have bought brown rice-cookies.
And I have made my own "pesto" that I put on them. I mix green peas with sun flower seeds, olive oil, garlic.
I have also experimented with parsley, tomatoes, nuts, oil. I mix it hard to use it on these ricecookies or on glutenfree bread.

I take a daily vitamin including many vitamins, antioxidants and minerals. I take 2 teaspoons with fishoil.
The primrose oil is in capsules and I take 3 every day. They helped me after 3 days. At night I take
two capsules of yoghurt bacteria. I take 3 teaspoons of something called "Mighty Greens", which I mix with
psylliumseeds. I put rosemary in my tea.

Because I am a dancer I exercise every day. It can be hard but it helps more then just giving in to the
fatigue. It helps depression too. I do a tough yoga and a gentle pilates and a bit of gym. Weekends I just
relax and then I am really tired and body feels more stiff and slow.

This is new to me, but I realize I have to do something to help body to heal. The doctor will not help me.
The books help. I just finished reading "Body out of Balance". People here help. Let us help eachother.

Love and good luck!!
Ami

[beverley]

Ami,

I think it's brilliant that you have taken the initiative - I really take my hat off to you.  Don't go too mad and burn out.  I know when I have done a similar change in diet that I kept it up with great enthusiasm for quite some time (months) but then found I craved things that weren't part of it (mostly cheese) and slowly I undermined my diet and bad habits crept back in.  I think it is very sensible to allow a 'little of what you fancy' so that it doesn't become too much of a chore.  Have a great Christmas.

Beverley

[Ballerina]

Thanx beverly

I hope I will make it. And not be "too good". I prepare to cook my own food all Xmas.
Right now I am OK with diet.

Merry Xmas!

I make cake of dates and nuts. It helps.

Ami