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#16 T.H.

 
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Posted 08 October 2010 - 12:15 PM

Sorry it's going to be difficult for a while!

And a few other things that, I'm sorry to say, will add difficulty.

1. Gluten free facilities may STILL make foods that have too much gluten for you to handle because the grains come from somewhere else and can get contaminated on the way into the facility. It differs how 'gluten free' the gluten-free facilities actually are, I've found out.

Bob's Red mill, for example, tests the grains coming in and they have to be less than 20ppm of gluten to get into the facility, but this can be too much gluten for me, personally. I was reacting to Lundberg rice and couldn't figure it out because it's a gluten free facility, too. When I finally called them up, they said they have a gluten free facility that only processes rice...so they don't test their products for gluten at all, not the ingredients coming in or the products coming out. :blink: Ugh.

However, for buckwheat, this place was recommended to me because they grow the buckwheat there and only mill buckwheat on the equipment:
http://www.connectma...oyes/index.html
I haven't tried it yet, but it sounded hopeful. Ancient Harvest Quinoa has done well for me as well.

2. Naturally gluten free food is probably something you'll have to chuck out the window for a while. Which means simple sugar, cocoa powder, baking powder, all that? Nope. They're not safe if they are not completely gluten-free. Or oils. Or nuts and seeds because of the processing. Sickest I ever got was off of plain pistachios. Any meat cut up at the deli is a CC risk, too, if you are really just going super-strict gluten free.


Just as an example of super-duper strict gluten-free, which is what I've had to be so far to stay safe (only a year now and still keep finding things that get me, sigh).

--I use coarse sea salt that I grind up myself. I don't use spices, just fresh herbs.
--I haven't found any safe nuts or seeds or oils yet, so I don't get to cook with oil (although olive oil seems to be one you can find safely, as some are made in companies that ONLY make olive oil). I cook squash and roast the seeds for my seed usage.
--I buy meat that is prepackaged from companies that only process that meat. I make my own broth.
--I can't get any dried fruits, just fresh fruits and veggies.
--The only safe grain I've found to date has been Ancient Harvest Quinoa. I thought a gluten-free amaranth was good and finally realized it's been affecting me and had to drop it. I'm going to be trying the buckwheat and also a teff that's from a teff-only company.
--I have to keep a pan, cutting board, etc... totally separate from the ones I use for my family, even though my family is gluten free, too. They can just tolerate more gluten than I can. :(
--I have started a garden and planted fruit trees just so I can get some of these herbs and things a little cheaper. An inside herb garden might be really useful for you, I imagine.

It's, well...yeah, it sucks. It's hard. But it has kept me healthy. Doing it in bulk cooking spurts is one of the few ways I stay sane and don't spend every second cooking. Bento boxes have been helpful, too, because then I can make a bunch of stuff and freeze if for use later in small amounts, and mix it up a bit.

Re: the steroid possibility, though? There's a study out that say the next step that seems to help the most, if going totally gluten free doesn't work, is to look at food sensitivities and allergies. I could find the link for you, if you'd like to see it?

Wishing you good luck, honestly. There's a lot of us here right in the same boat, and we're rooting for you!
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#17 T.H.

 
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Posted 08 October 2010 - 12:26 PM

If you can find some safe whole grain amaranth (Barry farms was recommended to me, but I haven't tried it yet. It's on-line), you can pop it in a pan - it makes teeny, tiny popcorn like stuff. You pop it 1 Tb at a time in a hot pan. You can mix that with gluten-free honey or agave syrup (they sell this in bulk on (Company Name Removed - They Spammed This Forum and are Banned). It's supposed to be gluten-free, from madhava, but I haven't tested it) and a drop or two of fresh lemon juice and roll it out into a bar. It's a candy in Mexico called Alegria. The humidity affects how well it holds together, but it's pretty quick and tasty.

Sadly, I have yet to find a chocolate that didn't do me in.

But for quick sweets - honestly? I haven't found any I could eat yet. Probably your best bet is fruit and a dip, like honey or agave syrup, if you can find one that is gluten-free.

I'm kind of hoping someone might have something sweet you can make that doesn't require sugar and other processed stuff. I'd jump on that like crazy!

Oh! And I just thought of something - some celiacs still have trouble with gluten-free oats or quinoa - react just like it's wheat, rye, or barley. If you've been having a lot of quinoa or gluten-free oats, maybe you could drop those and it might help?
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#18 GFinDC

 
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Posted 08 October 2010 - 09:24 PM

Hey Glutenator,

You posted about Vans' waffles. I had to quit those when I quit soy. Or rather soy quit me, something like that. So, although they seemed like a good thing, gluten-free and all that, for me they were not so fun. Celiacs here seem to get other food intolerances showing up fairly often. And the other food intolerances can cause plenty of problems too. Gluten can makes us sick, but these other food intolerances can do quite a number on us also. That is a secondary advantage for you if you cook your own food from scratch. You will know what you are eating, every ingredient, and can probably pick out foods that may be bothering you easier.

I tend to do what other posters have said. I cook large amounts of food at once on the weekends and freeze some for later. I buy the family size packs of chicken, or hamburger or whatever is on sale and cook it all up right away. Then I can make rice or quinoa or split pea soup or something else to mix the meat into. I get Enjoy Life brown rice wraps and make wraps with rice or whatever and some kind of dead animal, oops, meat, that is! When I first started doing this I would make somewhat complicated meals of rice and various flavorings etc. But after a while I found that since I was new to the diet I ended up making myself sick by adding too many spices etc I wasn't sure of. So instead I started making very plain rice or quinoa or what not and adding the spices, sauces, fixin's etc as I ate a portion. That way I didn't end up ruining a big batch of food. Anyway, rice keeps better, doesn't get so soggy, if it is by itself without lots of sauces etc added. That's probably why Chinese restaraunts put rice in separate little containers for takeout.

I am not the most energetic cook though. I do big batches for the simple reason that it saves time and money and that's not bad. Plus if you freeze a different meal version every weekend for a few weeks running you can have a nice variety to choose from if you are into the whole variety in foods thing. Ahhh, I guess that's alright.

About the sugar fix. You can search for microwave peanut brittle recipes on line and find oodles of them. But brittles don't have to be just peanuts. You can add seeds, fruit, coconut etc to a brittle recipe. Maybe some of that popped amaranth? Use your imagination and have fun. I use Baker's Secret unsweetened baking chocolate squares for making candy. So far I have been ok with it. It is soy free and dairy free, actually 100% cacao too. There is a brand sold online called Tazo, but I haven't tried it yet. It is also soy free/dairy free. Probably if you search this site for snacks or bars you will find some good recipees for various kinds. I don't actually make candy very often but sometimes in the winter or cold weather it is fun to do. If you make a nuker brittle use a deep glass dish, preferably clear glass, and keep an eye on it. It is easy for it to boil over the dish top and also to burn the sugar if nuked 'til it glows. Soak the used glass dish for a few minutes in plain water and the leftover sugar/candy will clean right off. Somewhere on here is a recipe for pumpkin bars I haven't tried also.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#19 dilettantesteph

 
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Posted 09 October 2010 - 05:52 PM

We are two of a kind T.H. I have problems with all those things that bother you. I wash my quinoa carefully before eating it. For chocolate, I take raw cocoa nibs, wash them carefully, roast, and grind. That is better than nothing. Right now I am searching for a sugar. Have you found one?
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#20 PattyBoots

 
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Posted 09 October 2010 - 06:54 PM

I wonder if this is why I got to be this old (46) before REALLY having problems. I remember telling one doctor that my idea of convenience foods was frozen vegetables. We've always eaten at home, and FAIRLY simply. I can't do the "cook for the week" thing because if it's not fresh, I can't eat it. Can't stand leftovers unless I turn them into something else, which is why I'm known as "The Leftover Queen". And if it's not something I want to eat, forget it. Never been a "mindless" eater or just poke stuff in my face. I've always rather gone hungry than not enjoy what's in front of me. *shrug*. Not trying to be smug, but, I ENJOY food. We've just never been "pre-packaged" kind of folks so it was a LOT easier.

We had grilled wings, Italian stuffed zucchini and bacon green bean bundles tonight. All naturally gluten-free (well, I do replace the croutons in the zucchini with herb seasoned Chex), tasty as hell, and on the table in less than an hour.
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