dani nero

oops sorry for the double post

I always suggest probiotics to people who still experience alternating bowels. They really help with balancing the gut and stopping the D and C. Have you taken them?

I've been advised to take them many times but have been neglectful :-/ I still haven't looked for a suitable low sals and dairy-free one and I'm a little clueless.

I'm not taking any supplements yet either, partly because I'm worried the test results will show nothing, and the doc will be giving me the standard pat on the back send-off. Then there is the problem of how incompetent the pharmacists are. I don't trust their recommendations. Whenever I go to the pharmacy and ask for soy-, lactose- and gluten-free supplements I don't get the right help.. so I thought it would be best to wait for the doc's appointment.

I once went to a pharmacy and asked if they knew what brand of toothpaste was gluten-free, and the answer I got was that no toothpaste can possibly contain gluten.

I also went (to a different pharmacy) to get pain-killers, the pharmacist recommended aspirin, but when I told her about the G6PD she had no clue what that was, so I told her anemia from legumes, and she said there was no such thing.

The alternating d and c is quite common during gluten recovery. Don't read too much into it unless you see a pattern or have immediate recognizable symptoms from a particular food.

Vitamin panels will help; sadly, you can't run Celiac panels now that you are gluten-free. However, you never know what a doc will say regarding dx. If it is clearly a case of not being able to tolerate gluten you can always be classified NCGI. Of course, alot of us have found that it doesn't matter what doctors say - family members either will or won't (listen or be tested).

Good to know about the d and c. I like hearing the word recovery :-)

I might agree to a trial period of going on gluten again if the doc asks, although I'm being reminded right now of why I am dreading the thought every time I think about it (I gained an entire dress size from glutenation swelling, and the DH blisters have finally made their appearance today).

I figure, that dust must have gluten in it, since dust is just a collection of clothes and skin particles and are larger than 20ppm. Also, clothes and skin particles have gluten (since one washes clothes with gluten-containing detergents and one wears these clothes on their skin), so dust has gluten in it.

So is it safe to be cleaning an area with a lot of dust in it and with dust floating in the air?

Paranoia can be your friend, and it can be your enemy!

Life just isn't fair for us. But let me ask you this, even if everyone at your office prepared gluten-free dishes, would you still eat them knowing that they were made in a not-gluten-free environment? All the people at the potluck have no reason to decontaminate their kitchens.. so this doesn't really work for you, and it's kindof unrealistic to expect everyone to be an expert on gluten CC.

The best for you to do is agree with them that in such occasions you're the exception.. You'll be bringing your own lunch for one, as you can't really have any of the other dishes.

Well, the first thing I notice when I Google low salicylate diets (which I have no experience with) is that maple syrup and cocoa are low salicylate. I make hot chocolate from milk, cocoa, and maple syrup and I love it. Maybe when you've figured out the rice milk thing you can try that? Also, cashews and hazelnuts are listed as being 'low' salicylate. So a paste from chopped hazelnuts and maple syrup over chicken in a crock pot with onion would be a nice change, and make the chicken nice and moist. You might put it over a bed of sauteed sliced bamboo shoots and cabbage.

The list said garlic, shallots, parsley, leeks and saffron are low sal. These are all (except parsley) strongly flavored, delicious seasonings. Garlic, leek, onion in oil, add diced chicken? Try searing red meat and then adding the oil you use and then browning your onion in that, will add a great deal of flavor. Conversely, try browning your onion (slowly, always go slow with onion!) and then searing the meat in that.

I will have more thoughts, but need to research the diet more.

Edited to say: And if you can have onion, tomato, and garlic, then make your own salsa! The more garlic, the spicier it will be.

My mouth watered just reading that.. The nut/ maple syrup dressing sounds like an amazing alternative to the one I've been cheating with. They all sound really really good, thank you! I will have to wait until I add maple syrup and the nuts :-)

Dani,, are things improving at all?

I've improved dramatically after starting the low sals diet and adding sweet potatoes. For once I'm less fatigued and not itching my skin off anymore. I owe it all to the advice I've been getting here!

My only problem now is bowel movements.. I get D for a few days then alternate to C for a few more days.

I think the doc will just be adding to my list of frustrations, but I've decided to go to the doc for two reasons: To ask for levels tests to see what I'm lacking, and I'm hoping that getting officially diagnosed will be a wake-up call for my family. They're not listening to me sadly.

I am VERY greatful that I am starting to feel good, I guess I just want to feel GREAT all the time..

It's great to hear others reaching that feeling and wanting to stick to it rather than being overwhelmed about leaving gluten behind. It's really refreshing and I hope you'll always feel great :-)

Just a thought and I hope it's not a stupid thought, did you go through decontaminating your whole kitchen? And did you try removing the pro-biotics that you just added to see if they were causing the unwelcomed bowel movements?

What do you eat and not eat by the way?

Ok, what is determining this list? Were you tested for food intolerances or are these the only things you have so far succesfully reintroduced on an elimination diet? And when you say limited herbs and spices, do you mean only certain ones or just a little bit of any one?

I sadly wasn't tested for anything yet. THey told me three weeks ago that my doc would be seeing me in four weeks, but I'm still waiting for the appointment letter. I'm hoping that waiting this long will be worth it.

These are foods that I've successfully added into my diet so far. Sadly all spices seem to be high on sals, so I try hard to only add them when the food is uneatable otherwise (putting aside my cheating with the salsa chicken)

I have to ask, what is "sweet water fish"?

I just realized that you probably got confused because the correct term is freshwater fish.. isn't it.

I have to ask, what is "sweet water fish"?

It's probably lake and river fish (except for river fish that also lived in the saltwater).. They have an amazing fish called abborre here in Sweden that I absolutely love, but it's really expensive. I sadly have not run across any other kinds.

Dani, I don't know if you can do nuts at all, but cashews (I believe) are the only low sal nut. Check and see.

You can make a variety of milk, cream, cream cheese sub using raw, unsalted cashews.

You soak the amount to use in water overnight in the fridge, then rinse. Then put the nuts plus fresh water in the blender and mix to the consistency you want. More water=thinner.

People use this as a raw, vegan cream cheese in a thick form. They even make cheese cakes with it.

I did buy a bag of plain cashews before getting glutened :-D It's great that they can be used in many other different ways too! :-) It'll be 12 days after the glutenation in a week.. I'll add the cashews.

I forgot about almonds being high sals, good thing I didn't find any almond milk today!

Thanks once again!

Oh, I do know how you feel---I felt the same way when I first came on--and I still do!

Rice milk is not that exciting to me but I made it when I first had to be dairy free and it served a purpose. I use coconut milk now.

I tried a few recipes for rice milk. They are essentially the same.

Open Original Shared Link

THANK YOU :-)

When I was trying to convince my brother to go get tested, he replied that he doesn't want to go gluten-free because he wants to be able to keep eating rice and bread, and he's a doctor in mechanical engineering and artificial intelligence lol

If the rice milk bothers you for some reason, I can tell you how to make it. The problem is--if you do not use it fast enough, it gets rancid quickly.

Wish we could help more. Too bad we all live so far away from each other.

IrishHeart, you're helping plenty and you have no idea how grateful I am to even find people I can talk to about this. the ready made rice milk was awful ;-( Please enlighten me with your technique!

I actually went looking for almond milk but I think Sweden never heard of it because it wasn't in any of the shops.

I completely agree, I would be 19 times happier living closer to members! We would probably do cooking meetings, gluten-free picnics, and so much more!

Dani, can you give me your no-no list? I will think of something interesting to eat, that I can promise you!

Really? :-O I would be ever so grateful my taste-buds would probably even worship you, but I don't think it'll be easy to come up with new recipes because I'm on a very limited dairy-free and low iodine and sals diet. My biggest no-nos (beside gluten) are legumes, due to G6PD.

These are the only foods I *can* eat:

Red meat,

chicken,

Sweet-water fish,

sweet-potatoes (but really limited amounts),

rice,

mountain salt,

carrot (in moderation),

green-leaf veggies except fresh spinach (frozen spinach is ok),

celery,

onion,

fresh tomato (limited),

aubergine (in moderation),

garlic,

lemon/ lime,

sunflower/ raps oil,

VERY VERY LIMITED herbs and spices,

7up Light (I know the sweetener is a bad idea but it's a guilty pleasure ;-( and I don't react to it)

I added unsweet, hard, and pealed green pears yesterday. I think they're staying :-)

Hi figment and welcome to the wonderful world of totally unpredictable reactions! When I first went off gluten I felt ok but then started feeling worse, and worse and worse. I kept thinking that I for sure was getting glutened and I blamed it on so many things.. including nail polish. Now that I think back I think that it all belonged to withdrawal symptoms, which do take a lot of time.. I felt poorly for over two months, and am still getting bloated + having a wide variety of pooping scenarios depending on what foods I've been adding to my diet. You might also be developing other food sensitivities while your gut is healing. I'm sadly not an experienced member but I'm positive you'll be getting some amazing advice here :-)

By the the way you're completely right about not being able to gross the people around here so easily haha :-)

I see! Thanks so much for your comforting, associations and advice! I love you for it!

I was getting bloated after eating the salsa chicken alone, with brown rice, or with sweet potatoes. What I did last night and today was eat the salsa chicken with pealed hard unsweet pears.. and no bloat.. How is that possible?

Make my own rice milk? I didn't know that was possible!

I found the rice milk I have in the supermarket.. It contains rice raps-oil, salt and emulsifiers. Do you guys think I should make my own instead?

GUUUYS SOMETHING STRANGE HAPPENED!

I ate the hard unsweet pears *together* with the salsa chicken last night, and while I was waiting for the massive bloat, NOTHING happened!

I tried it again for lunch today, and still, no bloat :-O What is going on!

I also have a small question, if I don't react to brown rice, does that mean white rice is ok? I managed to find rice milk today and I'm overly excited! I haven't tried it yet though.

Unless you wash your feet like a cat?

Hahahaha

oh hunny...you can always whine! we GET it.

(hugs again) I wish I could push a fast forward button for you.

Such a button would work wonders!

Thanks :-)

WHOOPS, I am becoming a TOTAL bore then if you know my story so well SORRY.

I was trying to be encouraging, but failed, I guess...

let me try this then

(hugs)

and eat the pears for sure

wishing you well, IH

Nooo I didn't mean it like that! I meant that your story should probably be a clue for me to stop whining :-) But I whined anyway. Thanks for the hug and wishes, I'll savor every bite of my pears :-)

I can completely relate! *hugs*

The chocolate and cheesecake and pie and cookies and and and....

You'll get there.

Omg don't even get me started on pies ;_; Thanks for the much needed hug

There was a time when I could not eat much of anything. Even juicing fruits and veggies hurt me. Then, I was doing an elimination diet and thinking all the joy for life had been sucked out of me. My GI tract burned from mouth to rectum and I could not swallow without pain. I was bloated with inflammation, my hair falling out, itchy scabs and sores on my peeling scalp and my skin on fire from head to toe. Brain in gluten head hell and thinking...this just sucks.

Food became my enemy and I am a gourmet cook. It made me cry.

It pissed me off and made me sad.

But I could not keep anything in and foods just provoked various symptoms that made me want to swan dive off a cliff.

No gluten, no dairy, no soy, no this, no that...bah!!! argh!!

That was 15 months ago.

Today, I eat pretty much what I want-- within moderation!!!!-- and I am (mostly) fine. I have bad days too and I have to watch too many sals and amines and MSG, but it is do-able!!

No one likes to hear this (I know I didn't want to ), but....it takes time to heal your gut so you CAN eat more foods without consequences. Sorry, honey.

Hang in there.

Everytime you mention your story I think of how extreme things can get! I only hope that I'll be tolerating foods as well soon. I'm hanging but the pears will be eaten!