What we can eat: part II

This list seems to get smaller and smaller every month, but at the same time, the kids and I feel better when we stay on it, so there is definitely a silver lining. My daughter was starting to have trouble with her stomach again, so we've geared down on the diet, with new knowledge to add to the mix in our constant search for safe food for her.


What We Can Eat List
(A gluten free list that should be safe for most Celiacs. Products' ingredients and processing can always change, however, so this list can become out of date at any time.)

Some whole, fresh, organic veggies - no wax coatings, no preservative sprays, have to be able to peel them or wash them thoroughly with GF soap, or both. For myself, have to be careful that the mulch or fertilzer that the veggies can rest on aren't CC with gluten grains or derived from gluten. Not sure how much this affect my midget. Corn is still iffy, although more for CC reasons than the corn itself, we think.

Some whole, fresh, organic fruits - Once again, no wax coatings, no preservative sprays, have to be able to peel them or wash thoroughly with GF soap, or both. Still not sure if my daughter has to be careful with fruit, or if we've been getting some with sprays that we weren't aware of. Apples, pears, peaches, and citrus are the worst 'coating offenders' we've had issues with.

Organic unprocessed meats (red meat if grass fed, possibly poultry, wild caught fish, wild caught shellfish) - If there is not organic meat, grass-fed alone will work. No hormones/no antibiotics meat works in a pinch. Poultry has to be skinless, and it's in the 'iffy' category currently due to CC issues with the skin. Fish can't be cut up at the butcher's, and the other meat we are buying in larger amounts, still sealed from the slaughterhouse.

GF organic beans - Must be triple washed in GF soap. Not sure which beans may work. We're still checking it out. Nuts have been a bit of a failure and the kids both don't like them, so we're holding off for a bit. Seeds, we're foraging for (chalk up another Yuppie on the Prairie for us, eh?)

Pre-made foods:
Bariani Olive oil
Earth Balance organic peanutbutter, smooth or crunchy - checking on this one.
RealSalt sea salt - This one makes me ill, but we believe the kids are doing okay on it.
Field Day Mediterranean sea salt - on order, but we hear good things
Madhava agave nectar - still in the maybe category
Crown Prince Brisling Sardines in Spring Water - still in the maybe category
Horokan brand wakame sea weed - still in the maybe category

Due to reactions, we've eliminated the following until we find safe brands to use, or figure out how to grow it ourself:
Grains (except in-bulk Ancient Harvest Quinoa, triple washed, but it's getting iffy)
Starch powders
Dairy
seeds
herbs (growing our own, now, and those are fine)
spices
nuts (except the periodic unshelled nut that looks safe)
soy (too high a CC risk)
eggs - iffy, not sure why there may be a problem, but still iffy when we try 'em.


Today we're heading out to the local farmer's markets to ask questions of the folks there in the hopes that some of their farms might be able to help us out. So far, it's been difficult to find produce that is completely safe and neither I nor my kids have a reaction to, but we're working towards it, slowly but surely.

Gluten Free on the Cheap - Menu for a Food Stamp Budget

I came across a useful thing the other day, on the 'Talk About Curing Autism' website. As some of you know, many folks with autism do better when they go off gluten, or casein, or soy, or all three. Like most of us, however, people attempting this diet don't always have the cash to spend willy-nilly on specialty foods.

So some lovely folks at this site decided to try and offer some help. They developed a month's menu for a family of four that is gluten free, casein free, and soy free, and that can be bought on a food stamp budget. They managed to purchase their month's worth of food for $319.

I feel rather guilty and vaguely decadent, knowing how much more than that I spend a month, for just three people, too.

In any case, their menu includes the menu itself, a grocery list, and a link to all the foods you might need a recipe for (they're assuming you know what a carrot stick is, however). The article discussing how they went about this and what it can do for those with autism is here:
GFCFSF Diet on Food Stamps

The menu
Grocery list

The recipe links are on the menu page.

A WARNING:
While this is a great resource (the grocery list even mentions brand names), if you are a Celiac, you need to double check all the brands to be certain they are gluten free. A few of the foods were a contamination risk for celiacs, or were only acceptable if purchased from certain companies.

One example is their recommendation of Quaker oats for breakfast, which is not recommended for celiacs because Quaker doesn't have GF oats.

Overall, however, I think this is a very helpful collection of information. It's inspiring to try and come up with my own. Although considering my cooking skills resemble that of taste-bud challenged slug, I have a feeling it may take me a while to find enough food to make up an entire week, let alone a month.

See what I can do, though.

[EDIT] Sadly, it looks like this site has taken down this particular article and the links, or at least put them where I can no longer find them. Which is a huge shame, as it was a great resource! If I ever hear of it going up again, I'll post it at my new site, buffalo-to-go.com

Gluten Free on the Cheap - Tips for stretching that Food Budget

With the recession affecting us all, you can find a lot of ideas for saving money floating around the web right now, whether you're on a gluten free diet or not.

1. Buy in Bulk, on-line, or both
2. Buy on Sale
3. Buy less meat and more legumes
4. Buy less dairy
5. Eat less processed foods and more fruits and veggies

But sometimes, it's still not enough. So here's a few ideas that might help you stretch your dollars even more. Some of these require a little extra work initially, but they'll definitely help the budget.

1. Use every scrap. Many of our traditional recipes discard potentially edible parts from our produce. A little research on what is safe to eat may find you another seasoning or side dish from these discarded pieces. With Kale, for example, rather than discarding the stalks, chop and peel them to add to a stir fry, or boil them to use as a side dish. Wash and chop green carrot tops and use like you would green leaf parsley (unless you're one of the few who has contact allergies to these). Save chicken bones and use to make a batch of chicken broth. Salt and roast any of the seeds from your winter squash.

2. Use mini-leftovers inside of bento boxes. Those leftovers that are too small to provide even a one person meal can still be used in a creative and appealing lunch. A couple tablespoons of pasta sauce, for example, are perfect for a meatball or two. A few pieces of stir-fried broccoli, a couple slices of apple, a quarter of a hotdog - most of this is the perfect size to put inside an adult's or child's bento box. For some lovely ideas on how to utilize leftovers like this, check out the blog Lunch in a Box. It hasn't been updated in a while, but it's still worth a look.

3. Start an herb garden. Herb plants cost very little, the seeds even less, but the herbs themselves are fairly expensive if you buy them in the produce section. A small pot with a few often-used herbs can save you quite a bit of money, and can be grown either inside or outside, depending on your space requirements. You can snip off the leaves and dry them for later use, if you don't use them before the plants goes to seed. And you'll know absolutely that these seasonings are 100% gluten free.

4. In the same vein, start a garden, period. Pots on a porch or patio, raised beds in a yard, or even a few hanging pots inside the house can get you some extra produce - strawberries and tomatoes are great for a hanging garden. Get a small fruit tree that does well in your area so you have less upkeep to keep it healthy. Buy infant plants at a nursery, or start your garden from seed. It's most helpful if you get plants that produce a lot, like zucchini, or that you like to eat but usually can't afford to buy. You don't even have to purchase mulch for it, if you're anything like me. I had enough grassy weeds in the yard to pull them up, chop them up, and use them as mulch for my own garden. Free and gluten-free mulch. Wonderful.

5. Learn what's native and edible in your area. In our modern world, most places have edible plants that are often looked at as weeds. These are usually gluten free, and if they are weeds, they will usually grow with little to no effort on your part. Where I live, I learned of edible flowers, fruits, leaves, seeds and legumes that were growing naturally in my small yard. I even have wild amaranth! It took a bit of time to confirm which plants were which with the local botanical gardens, and I had to make sure I hadn't used any poisonous sprays near these plants, but it's been well worth it. I don't have to water, I don't weed, I don't fertilize. I simply pick and process these foods when it's the proper season. It doesn't get any cheaper than that. Also, don't forget that you can ask some of the local large acreage property owners if they would mind if you harvested wild forage from their property.

Hope some of these ideas can help you out in your quest for a less expensive gluten free menu!

Gluten Free on the Cheap - beet greens

Yes, I have no skill in food presentation.

I think this is something all of us who are going gluten free can appreciate: recipes for gluten free foods that don't use expensive ingredients. In this economy, it's more important than ever to save money, but we still need to stay gluten free so we can stay healthy so we can continue to earn a living, yes?

So, now I'll be periodically putting in tips and recipes for cheaper gluten free living. These are not the best recipes, and I'm sure better cooks than I can come up with better recipes (please, share 'em with me if you do!). But at least it may give some beginning celiacs a starting place. :-)

Beet greens

If you buy organic beets - which aren't that expensive, thankfully - no need to cut off and discard the greens. You can eat these with very little preparation time or effort.

What you need:
fresh beet greens, roughly chopped.
1 Tb, or less, olive oil, sunflower oil, or peanut oil
minced garlic

What you do:
1. Heat the oil in a pan on med. heat. Add the garlic and fry it until fragrant.
2. Add the beet greens and sauté until soft.
3. Serve as a side dish.

Note:
--We've noticed a difference in flavor between greens from the red beets vs. greens from the yellow/orange ones. I preferred the greens from red beets, personally.
--My kids preferred the flavor that we got using the sunflower oil.
-- For something to use the beets for, we've thinly sliced them, rubbed olive oil and salt on them, and baked them in the oven to make a type of chip.

Nice article on what it's like to be Celiac

Just thought this was particularly nice - if a little graphic, LOL.

ruhlman.com

But it's Gluten Free!

I hate the term Gluten Free.

Why? Because it's incorrect. In fact, Gluten Free is simply legalese. It doesn't mean 'no gluten.' It means less than a certain amount of gluten. And that 'certain amount' is whatever our country wants it to be...once the USA makes up its mind. The term should really be 'really low gluten' products rather than 'gluten free.'

I've mentioned this before, but it's been frustrating me a bit more lately, what with trying to discover the gluten levels of all our foods, now that we need to know. Because if my daughter reacts to above 10 ppm of gluten, then many 'gluten free' foods are no good for us. But most people who aren't celiacs - and many who are - believe that gluten free MEANS 'free from all gluten.'

So I cannot tell you how many times I've called up a company and had a version of the following conversation:

Me: I was hoping you could tell me what level of gluten you test for in your gluten free products.

Employee (in a slow, what-kind-of-idiot-are-you, voice): Our gluten free products are gluten free.

Me: Yes, I'm aware of that, but I needed to know what parts per million of gluten they contain because we have a child who is more sensitive than the average celiac.

Employee: They don't have any gluten. They're gluten free. They're made with no gluten ingredients.

Me: I'm glad to hear that. I'm sure they meet the legal gluten free standard of less than 20 ppm. But do you test your products for their gluten content?

Employee: They don't have any gluten. They're gluten free.

It typically doesn't get any better, because the only way to get past this is to actually give them a lesson in 'gluten free' really means and that's just not all that productive. Or polite, LOL.

What really bothers me about the term 'Gluten Free' however is when there are doctors who don't really know what it means, either. I've read so many accounts of people who were only buying gluten free products and were still sick. But when they spoke to their doctors, many of them were accused of cheating on their diets. Or they were assumed to have refractory celiac disease that simply doesn't heal. And it turned out that these people were simply consuming more gluten than their bodies could handle.

While knowing that their patient is on a 'really low gluten' diet might prompt some doctors to think about whether you might be getting too much gluten, a gluten free diet doesn't seem to have the same effect for many of them. Because a 'gluten free' diet doesn't have gluten. Right?

Wrong.

You would be stunned by the number of places gluten can worm its way into our food sources. For most of us, this isn't a problem. While celiacs have differing levels of sensitivity to gluten, many celiacs don't seem to react to super-low levels of gluten. Most of us do just fine with gluten free products. However, anecdotally, a small minority of celiacs have reported reactions to 5 ppm of gluten or less. Reactions have included the DH rash, which is a reaction that would be hard to contribute to something other than gluten.

As a result, if you are a celiac and you believe you have had a gluten reaction to something, don't dismiss it simply because the product has very little gluten. Do a little research, try it again under controlled conditions if you feel up to it, get a gluten home test kit and check how much it has for yourself. But if anyone tells you that you couldn't have reacted because the product is 'gluten free?'

They're wrong.

Here's some of the wacky, crazy places that gluten can be found in a gluten free diet (wbro stands for wheat, barley, rye and oats):

1. In your grains. Grains are often grown in the same or adjacent fields as wbro, shipped in the same trucks that shipped wbro, milled on the same mills, processed on the same lines or in the same rooms. That gives a lot of opportunity for cross contamination. So if a 'gluten free' grain or flour that you eat hasn't been tested for gluten, you have no idea how much gluten is in it.
2. In your beans, nuts, and seeds. Again, these are often grown in the same or adjacent fields as wbro, especially beans like soy beans, that are often grown as a rotation crop with wheat in the exact same field. They have the same issues with processing, as well, so they can be easily contaminated. So if you get sick and, say, nuts are all you ate? Don't discount it as a gluten cc source.
3. In your fruits and veggies. A number of pesticides, fertilizers, and coatings have gluten as a binder. It's little enough that if you had, say, one apple with a coating (that helps keep it from rotting as quickly), you might be okay, but if you had 2 or 3, it might be enough to make you sick. Mulch can also be made of straw from wheat, oats, etc... and will come into contact with veggies and fruits that grow lower to the ground. Since wbro aren't chemicals, they can still be used in organic products as well as traditionally farmed produce.
4. In your dairy products. They have shown minute amounts of gluten comes through breastmilk in humans, so nursing moms are advised to stay away from gluten when they nurse babies with celiac disease. Cow's milk...it's still breastmilk, just not human's. So if cows are fed oats, rye, barley, etc... in their feed, guess what can come through in the milk? And following that, anything made from the milk such as cheese or cream.
5. In your gluten free products. Because again, these aren't free from gluten, they are just 'really low gluten.'

To say again - this isn't an issue for most celiacs. Most of us are okay. But sometimes, we get more sensitive to gluten the longer we stay away from it. Previously safe products don't make us feel so good after a while. Or maybe we never seemed to heal all the way, we still get muscle aches, we still get stomach pains.

And if that's you? You might want to start checking things out in your gluten free world and see if your 'really low gluten' is not quite low enough for what your body needs. :-)

How Gluten Free are Gluten Free Companies?

Now that we're suspecting our daughter is reacting to gluten between 10-20 ppm, I've been doing a lot of research. We need to find products that are less than this, obviously. It feels a bit like when I first got diagnosed and was scrambling for information just so we could EAT. And I'd be happy to share, so you all don't have to do this too!

Common Companies That Make GF Products
This information is not guaranteed, of course, and it only applies to the GF products (some companies have separate facilities for their GF products and thus, separate practices). I am only relaying the information that I was told by one, sometimes the combination of two, employees. It could have errors, as a result. The company could also change practices at any time. But...this is the best I've got at the moment. :-)

Arrowhead Mills
10 ppm or less. Consistent testing.

Bob's Red Mill
20 ppm or less (although most test at 10 ppm or less). Every batch tested.

Ener-G
5 ppm or less. Consistent testing (not every batch).

EnjoyLife Foods
10 ppm or less. Every batch tested. GFCO certified.

Glutino and Gluten Free Pantry (same parent company)
20 ppm or less. Every batch tested.

Kinnickinnick
5 ppm or less. Every ingredient allowed into the GF facility is tested BEFORE it's allowed in. No tests on the products post-production due to this.

Lundberg Family Farm
20 ppm or less (for rice products). Rice Chips are tested, every batch. Rice flour is tested periodically.

Pamela's Products
5 ppm or less. Every batch tested.

Rudi's
10 ppm or less. Every batch tested. GFCO certified.

Udi's Gluten free Foods
10 ppm or less. Every batch tested. GFCO certified.

I am still awaiting information from Hodgson Mill, at the moment, and when I do, it will be added to the list.


Now, a bit of information on testing
- 5 ppm of gluten is currently the lowest amount of gluten that we have accurate tests for.

- Testing every batch will be of more concern for more sensitive celiacs, and those with worse reactions, as it should mean you're not going to get a cross-contaminated batch from that company.

- GF facilities will make cross contamination less likely, which is of concern with companies that don't test every batch. In the above list, Arrowhead Mills and Rudi's (and Hodgson Mill, when it's put up) did not have a GF facility. Pamela's Products has a GF facility for their flour mixes, but not for their other GF products, such as cookies.

Wishing all doctors were GOOD doctors

We'd like to believe that our doctor knows what she's doing. We might not think about it much, but usually, we assume she had good grades and studied hard and now she keeps up on current medical research and listens to our symptoms and tries to find the root cause.

In reality, that's not always the case. In fact, an old joke is unfortunately all to accurate:

What do you call a man who has the lowest passing grade in medical school?

Doctor.


Yeah...scary to think about sometimes, isn't it? Not as though this is unknown, though. At this point, most of us are familiar with the 'bell curve' and how often it applies to human beings and their abilities Why should doctors be any exception? The majority of doctors fall right in the middle of the bell curve - average.

Wow - not too many good doctors, eh?

What this means to us, in my opinion, is this: if you have average problems, your average doctor who got average grades and does an average job will probably be just fine.

If you have anything out of the ordinary, unusual, or less common, your average doctor will not be as much help. In fact, they will probably miss it, ignore it, attribute it as 'all in your head' or 'anxiety,' or treat the symptoms without ever trying to track down the cause. (Your baby has been spitting up so much it's essentially vomiting every day? Here, let me prescribe an anti-emetic until they outgrow this. I'm sure there's no physical cause for her to do this thing that healthy babies don't do, even though I haven't checked out what you're feeding her.)

This is, IMO, becoming a HUGE problem.

Because here in the USA, we seem to be acquiring more and more 'less common' problems. And what I'm hearing about the doctors' reactions, from news and friends and family and acquaintances through the webiverse, makes me even more concerned.

• Food allergies are increasing. Been researched and documented. They can have emotional, mental, and physical effects.
• Auto-immune diseases are increasing. Again, researched and documented. They, too, can have emotional, mental, and physical effects.
• There is a correlation between pesticides and ADD/ADHD symptoms in children.
• There is a connection between certain food dyes and a number of problems, including hyperactivity and ADD/ADHD.

This research is out there in credited publications, it's easy to find (or I wouldn't have found it), and I'd believe it even without too much research because I've experienced it myself. Like when I wake up absolutely furious for no godly reason, simply because I've eaten corn the day before.

I've seen it in my son, who, when given dairy, would have out of control rages and every little stumbling block in his path would send him into a torrent of tears or another raging fit. Guess what disappears when you take his 'bad' foods out of his diet?

I've seen it in my daughter, who had crying jags that last hours, no matter how comforted she is or what the problem is, whenever she ingests gluten.

Talk to people who have non-life threatening food allergies, or auto-immune diseases like celiacs and autism and MS, and you will find many among them who had significant emotional or mental changes once they changed their diets.

So, why does this matter? It matters because THIS is also going on:
-Psychiatrists are talking about an increase in mental disorders in children, like ADD and ADHD. The parents I have spoken to, both on-line and in person, who have children that have been diagnosed with this? Most have never had a doctor mention the possibility of looking at what their children were eating.

-There are diagnosis like Operational Defiant Disorder, which is described as this: "...Kids with ODD lose their temper quickly and often. They’re easily annoyed and frustrated by other people, resentful and hostile with adults, bossy and pushy with other kids. They blame everyone else for their difficulties and make excuses for their inability to cope..." (raising small souls, ODD)

Wow...that sounds exactly like my son when he's on his bad foods. Huh. Who'd of thought. *ugh*

The best part, to me, is how many of these kids have OTHER symptoms to boot. Like frequent stomach pains, constant illness, chronic sinus or ear infections, diarrhea or constipation. And still, in the people I speak to, food was almost never looked at as a cause.

A child is complaining about problems that involve their digestive tract, and food is not looked at. They are having infections and are sick all the time - which is not normal - and it's not being considered that perhaps there might be something affecting the entire body, something systemic, like, perhaps, an auto-immune disease. Or an allergy. Heck, even parasites.

You know what? Every mom in the freaking WORLD first thinks about food when their child complains of stomach pains, because that tends to be logical, and yet so many doctors are not? 0.o That's honestly shameful.

For some of these kids whose parents I've talked to, the children have been put on drugs. Some of the parents have been told by their doctor that their child needs counseling because the stomach pains and behavior issues are based on stress, anxiety, a need for attention, or a desire to avoid school. Of course, this has usually happened without any examination of their diet, any tests for diseases or conditions that can affect mood and gut. Without even any questions that would give information on whether a child should be tested for certain diseases or conditions.

This needs to stop, and I think we patients need to play a big part in that. Because we and our kids are the ones who will suffer if it doesn't change.

When we discover something about our health that contradicts a previous doctor's half-assed diagnosis? We should write and tell him.

When we figure out problems with our health that could have been discovered previously if our doctor had actually listened to us instead of interrupting? We should write and tell her.

When a doctor is excellent, and listens, and finds out what weird thing is going on in our body? We should write and tell her.

And when a doctor works with us to try and figure out why we are sick? Even if he doesn't find the answers, we should write and tell him how much his work means to us, because we need to encourage the good doctors as much as we need to inform other doctors that they are screwing up.

And maybe, if there's enough of us, we can help them build their awareness so they can improve and they can help us in return.

Tonic Water and corn syrup??

And this uses....wait for it....sweetener! Dammit!

I was going to make a homemade soda for the kids the other day - tonic water and homemade prickly pear syrup that I picked from the cactus and washed and juiced and made with my own little thorn prickled hands. (Go, me! Another point for Yuppie House on the Prairie!)

My husband asks if I can have it, and I'm not sure, but he's already looking at the label to see and let's out a 'You've got to be kidding me.' Or something cooler and geekier, but essentially the same.

Turns out, our Tonic Water has corn syrup.

WTH? Seriously? How did I not know this had a sweetener of any kind? And it always has, far as I can tell.

Definition of Tonic Water: a carbonated beverage that derives its somewhat bitter taste from the addition of quinine. It is usually flavored with lemon or lime, lots of sugar, and often contains caffeine. (wisegeek.com)

Guess this is my 'learn something new everyday' moment. Just kind of blows my mind. So, what do the brands that we used to buy have as their sweetener? Corn syrup, of course. Sigh.

Canada Dry Tonic water: Carbonated Water, High Fructose Corn Syrup, Citric Acid, Sodium Benzoate (Preservative), Quinine, Natural Flavors.

Schweppes Tonic Water: Carbonated Water, High Fructose Corn Syrup and/or Sugar, Citric Acid, Natural Flavors, Sodium Benzoate (Preservative)Quinine.

This (more expensive, of course) Tonic water doesn't use corn syrup, however!
Q Tonic: Triple-purified water, Organic agave (sweetener), Peruvian quinine (hand-picked in
the Andes Mountains)[as opposed to elbow-picked like we poor schlubs usually get), Lemon juice extract [woo hoo, no citric acid!], Natural Flavors [Aaaaand, have to go and research the gluten and corn part again now. The fun never ends, LOL. I think I may just stick with the juice!]

But for those avoiding corn, beware with any of the mixed drink with tonic water, eh? Be safe!

Getting Glutened - what a surprise

Two weeks ago, I believe I had what I can really described as my first experience getting 'glutened.' For those who are reading this but aren't Celiacs, getting glutened is just an easy way of saying I ingested gluten. Yes, I am a hip part of the Celiac in-crowd, using the lingo and everything. Look at me go. Yee ha.

Before this? There's been the possibility that I accidentally got gluten contamination in tiny amounts, but nothing that stuck out as a definitive 'gluten reaction.' And for the record? It sucks. It sucks long and hard, like a broken, whirring hoover.

I couldn't say for sure that eating gluten is what happened, considering that this reaction hasn't happened before, but...it's the best I can come up with, and it matches the reactions of other celiacs, so I'll assume this is it. Otherwise, it's just another wacked out thing going on with my body, and I'd rather like those to stop some time soon. I'd prefer to assume this is something already known.

And what, you might ask, happened?

I ate some pistachios. Who would think this would be an issue? They were mixed in with newer nuts that I know are gluten free, and I forgot there might be other brands of nuts in our container (processed in a facility that contains wheat, the bastards). My daughter had some, and 15 minutes later her stomach was hurting something fierce. Five minutes after that, I attempted to stand up from the couch bed and had such horrible vertigo that I fell back down onto it. Couldn't get up the next two tries, either. Started having horrible nausea, then vomiting and the shakes and the sweats.

The vertigo wasn't enough to keep me down after that as long as I walked and moved very slowly for the next 4-6 hours. Vomiting died down to mere nausea. And a few days later, the dizziness was finally starting to fade completely away.

I haven't cheated on my gluten part of the diet over the last year. Been really, really good on that front, which I'm a little proud of, actually. I'm as human as the next guy, possibly a bit more lazy than some and clumsier than many, and I tend to obsess and screw up a lot, but at least on that one tiny slice of my life's pie, I did good. I didn't try to cheat and sneak gluten.

Go, me.

However, at this moment, I am amazingly even more motivated to avoid gluten. That reaction was truly nasty and very unexpected. I never HAD reactions to gluten, that I recognized, before all this started. I knew I'd been getting more sensitive to foods as time has gone on, and I have felt very bad eating many foods this last year, but this? Nope, that's new. Guess now I know what most Celiacs mean when they report that they are more sensitive to gluten after they avoid it for a while.

Let me just say, my fellow Celiacs, that I am right there with you in the nauseating trenches, dodging gluten bullets and hoping like hell I don't get hit with one again. Once was quite enough, thank you very much. Too bad gluten isn't looking like it's up for peace talks any time soon so I could stop ducking. I'd be all for that.

So, Gluten Free Tip for the day!
1. Watch out for plain, unflavored nuts. They may look safe, but many of them are processed in facilities with wheat.

Tea Bags - urban legend?

Now if you're gluten free like I am, you've probably come across safe tea as well as the evil unsafe tea that contained barley or oat products or, every once in a while, wheat products as well. If you've been gluten free for some time, you've probably also heard about tea bags as a potential gluten contamination issue.

Some tea bags are sealed with gluten (wheat paste) - at least, that's what I've read, on multiple sites. But I started getting suspicious about this when I noticed that of all the tea companies I've checked with, none of them used gluten. They used heat crimping to seal their bags. All of them.

And I called a lot of tea companies, let me tell you. I was the tea company calling dervish of doom. Telemarketers would have wept at not having me on their team.

So I queried the folks at celiac.com and no one else had actually come across a tea bag that had been sealed with gluten, either. In fact, I got the following reply from one David, a fellow forum member:

[Gluten sealed tea bags are a] Myth!

The tea bag fabric is crimped under extreme pressure causing it to bond.

My father was a production manager in Allied Suppliers (Liptons) and installed and set-up the first tea bagging machine in Ireland 40 + yrs ago.

Very interesting answer. I must admit, though, I am more cynical these days if I don't have the information straight from the horse's mouth. So I believe the first tea bagging machines in Ireland didn't use wheat paste, but part of me wonders if some modern, super-organic, back-to-nature company might think it was more 'natural' to seal their bags with wheat paste.

Weirder things have happened.

Still, the non-existence of gluten-sealed-tea-bags jives with what I've managed to research, so I'm slowly but surely beginning to lean in the direction of 'urban legend' for a wheat paste sealed tea bag. I know I'll still be calling tea companies and asking periodically; a bit more work is very much worth avoiding the reaction I'll get if I get gluten. But for those of you who have been worrying about this, maybe this information may be of some comfort.

However, if anyone knows of ANY tea bags that actually seal with gluten? Please, let me know! I'd like to put this legend to bed.

Comic Time

Some humor for all us Celiacs. All you need to know to get the entire punchline is that Mal (a character mentioned) is a very violent individual.

http://headtripcomics.comicgenesis.com/d/20071109.html

What We Can Eat

My 'what we can't eat list' was for my mom, and this new list goes out to my mom-in-law, who thought it might be more useful to get a 'what we CAN eat' list. She's probably right. :-)

So, here we go!

What We Can Eat List
(A gluten free list for our family that incorporates our other food issues, as well. It should be safe for most Celiacs, although as always, those who are more sensitive might have issues. Products' ingredients and processing can always change, so this list can become out of date at any time.)

Whole, fresh, organic veggies and herbs- Whole, because veggies cut up in the store tend to present cross-contamination issues. Fresh, because frozen, jarred, and canned veggies typically have citric acid or other ingredients on our 'no' list.

Pre-peeled baby carrots (if they are NOT by cal-organic) - seem to be okay.

Whole, fresh, organic fruits, in moderation - Whole and fresh for the same reasons as the veggies, although if the kids eat more than 2-3 fruits a day, it seems to be a problem. Kiwi and peaches are currently on the 'no' list, however.

Organic unprocessed meats (red meat, poultry, wild caught fish, wild caught shellfish) - If there is not organic meat, grass-fed will work too. No hormones/no antibiotics meat works in a pinch. No sausage, hot dogs, salami, or cured meats usually. Stores like Smith's and Fry's recommend that people not get anything made or sliced in their deli, including meats, if we are trying to avoid gluten. Applegate Farms has some luncheon meat that we can have, like their sliced roastbeef.

Whole Grains, flours, and Starches - Barry Farm Foods, Lundberg Family Farms, Purcell Mountain Farms, and Bob's Red Mill brands seem to be okay, currently. These might change as we test them out more. Ancient Harvest is okay for Quinoa grain and flour. Grains and starches we can have:
Amaranth
Arrowroot
Buckwheat
Cassava
Millet
Potato
Quinoa
Rice
Sorghum
Soy
Tapioca
Teff

Any Organic nuts, beans, and seeds - Whole or as a flour or meal, like Almond meal. Barry Farm Foods, Lundberg Family Farms, Purcell Mountain Farms, and Bob's Red Mill brands again. Many nuts are processed in facilities that process wheat, but I think any brand that said its nuts/beans were GF and weren't processed in a shared facility would be okay.

Pre-made foods:
Bariani Olive oil
Whole Foods (365 brand) Extra Virgin Olive Oils, Sunflower and Safflower oils.
Whole Foods brand grapeseed oil.
Let's Do...Organic brand organic coconut - dehydrated flakes or shredded
Edward & Sons Rice Snaps (crackers) - flavors we can have: Toasted Onion, Unsalted Plain, or Onion Garlic
San-J Organic Gluten Free Soy Sauce
Coconut Secret's Coconut Aminos (soy sauce substitute)
Lundberg Family Farms brown rice cakes
Earth Balance organic peanutbutter, smooth or crunchy
Sunbutter Sunflower Seed Spread
Bragg's apple cider vinegar
McCormick Spices will do in a pinch, although we are going to be trying Penzeys and American & Organic Spices as our regular GF brand. (Last I heard, Penzeys has a GF facility, and A&O Spices gets their products certified GF).
RealSalt sea salt or kosher sea salt - we grind it up smaller ourselves.
Hain Featherweight baking powder with potato starch
Arm & Hammer baking soda
Organicville organic Ketchup (trying this out)
Madhava agave nectar
Tinkyada rice pasta
Crown Prince Brisling Sardines in Spring Water
Santa Cruz Organic lemon and lime juice
Amy's Family marinara sauce
Simply Orange orange juice, calcium added, pulp free

A few things are being used every once in a while that I'm not completely certain about. Haven't heard back from the company on their GF status, or the kids might have had a mild reaction, but we're not certain. We'll use them in a pinch:
Organic Red or white wine vinegars of different brands - haven't found one that we completely like, yet. Going to try Annie's brand next.

I think that's about all we have, currently. No desserts look 100% good so far, although Purely Decadent makes coconut milk based ice cream that tends to be the closest the kids can have to a safe desert. And honestly? Every once in a while I'll cheat. Get a meat or other food that isn't completely organic. Get a food that says it's gluten free but might have a teensy bit of really processed corn ingredient or something. But typically, we regret it as the kids go crazy-bird on us the next day, so we're trying to be as good as we can.

We do have more foods we eat, we just tend to make them ourselves. Home made vanilla extract from potato vodka, homemade chicken broth and veggie broths, home made mustard, that sort of thing.

Something Weird This Way Comes

Life is weird. Really weird. I need a theme song to that effect, honestly. The weird life buffalo theme song. Of course, it's hopefully getting better, too, so my theme song would be having a happy crescendo right about now.

So what's going on in my world right now?

The Throat
I found a marvelous allergist who figured out WHY my throat was swelling up, and it's really odd. Odd enough that I'm very impressed he figured it out. Turns out, I have something called Paradoxical Vocal Cord Dysfunction. There are different triggers for this, but mine falls into the category of 'irritant induced.' When I come across certain smells, foods in my mouth, or food particles in the air, it makes my vocal cords all of a sudden try to shut when they should be open. Like when I need to breathe or talk. Not swelling at all, although it certainly hurts and you have trouble breathing, so you can imagine why it feels like it's swelling up.

Good news is that there are exercises that can help calm the vocal cords down after they trigger, so I can breathe a bit easier. I have to see a physical therapist for them, but even the very mild ones I've used to date have helped some. My voice will stay hoarse after I'm triggered, but I can breathe a little more, phew.

I've actually gone into a store twice now without a paper mask. I feel nearly naked, seriously. People can see my face for the first time in almost a year. It's weird. I don't think I'll be doing it again for a while, as it really does hurt when this triggers and I like to, oh, breathe normally, but to know that I CAN go without the mask? Wow. Simply wow.

And for anyone who has asthma - you should check this condition out. Depending on the study, between 40-56% of asthmatics ALSO have vocal cord dysfunction. It often gives symptoms that are very similar to asthma and so is overlooked. Also, about 10% of asthmatics who don't respond to treatment actually have vocal cord dysfunction instead, and NOT asthma. So, it's worth checking out!

The Reactions
So my allergist said he thought that the dysfunction should explain things on the 'scary' allergy front. None of my foods has given me hives, just the throat stuff, gut issues, and headaches and such. He's not sure why I'm getting other reactions from foods (we're going with celiac-related, at the moment), but if my vocal cords are the reason my throat has issues, then I should, theoretically, be able to chuck the epi-pen. My throat wasn't swelling up, just doing this and feeling like it swelled, so that should be good, right?

Unfortunately, looks like perhaps not. This week, after the diagnosis, I was, well....kind of insane. Like someone who is handed an unlimited credit card they never have to pay back and released into a mall.

I ate a bowl of ice cream. I ate a few handfuls of chips. I drank an entire glass of soda (all Gluten Free, of course). It was beyond awesome. And beyond stupid, but I kind of lost my head. Do you know how freaking LONG it's been since I had something different? And to find out that maybe some of these foods are okay to eat? There are no words. Winning a ferrari or the lottery or a whole month of babysitting are nothin' compared to this.

The ice cream made my insides about die, of course, but my throat didn't bite the dust, which is what I wanted to check when I ate it (Yeah, really. It was. And yes, I can lie to myself with the best of them.). I had the chips and the soda, and the same thing happened. And then, because one answer would be too simple, I got hives later in the day.

Son of a b!@$#.

Sigh. So much for completely chucking the epi-pen.

In some ways, I suppose this makes me think about my own body and trusting it. Yeah, my throat is doing this weirdo thing that I'd rather it didn't. But so far, out of the three things I've tried that I couldn't have, two of 'em did bad things to me. My throat feels a bit like it's my body's first line of defense. It's that asshole marine in the movies who curses and sneers but saves everyone's butt in the end by dying heroically as he holds off the horde of aliens so the other less irritating heroes can escape.

My throat is sacrificing itself so the rest of my body can dodge the bullet. Way to go throat. If only you could clue in that there are better ways to keep me away from the food. A letter would be a good start.

Dear body,
The following is a list of foods that will make you terribly ill. Don't eat them. You don't want the drama. I will text you when something good is sitting on the table and you can chow down.
Sincerely, your mouth and throat.

That would make it all so much simpler, wouldn't it?

Saving money - coupons for organic foods

Just found this lovely site, which had coupons for foods that we actually USE. Recommended by a nice article on finding coupons on organic foods.

http://www.mambosprouts.com/

Had Arrowheadmills coupons, as an example. Always good for us celiac folk!

Cleaning off gluten

Making sure gluten from something like this is wiped from the face of the earth.
Or at least the face of our kitchens.

Some facts, as I understand them.

1. Some proteins are more stable than others. This is why peanuts - with a stable protein - will still cause an allergic reaction after cooking. The allergen (protein) doesn't get destroyed much during exposure to the levels of heat we use.

2. Gluten is a storage protein, and the part of it that Celiacs react to is oh, so stable. Stupid stable proteins (I think I want a lot less stability, like right on the verge of a gluten divorce.).

3. Since these proteins are stable, they laugh in the face of cooking.


What does this mean?
It means that when we are trying to clean off gluten, it's a pain in the behind. It also means that since it's a stable protein, like the stable protein in peanuts, using information from a Johns Hopkins Study on cleaning and peanut allergens is probably as close to a cleaning guide as we celiacs are going to get for a while (We don't have a study of our own. Darn it).

The quick rundown on cleaning up peanut allergens

• Hand cleaning - Hand wipes, liquid soap, and bar soap cleaned hands well. Water left a small residue. Hand sanitzer left a small residue on half the cases.
• Table cleaning - Plain water, Formula 409 cleaner, Lysol sanitizing wipes and Target brand cleaner with bleach cleaned tables well. Dishwashing liquid left a small residue in a little less than half the cases.
• Dish cleaning - Nothing was used to wash dishes, because obviously the researchers aren't housewives who have to wash about five trillion times more dishes than they do table-tops.

Details about the study that we should consider
1. How did people wash their hands? Was there a set time and way for each person to wash their hands, or did each person wash their hands in their own way? This could affect what the results were. What kind of liquid soap was used? For Celiacs, some of this stuff is NOT gluten free, so that would have been nice to know.

2. Same question for tables: a standard way to clean, or people just cleaned any way they wanted?

3. Hand soap vs. dishwashing soap. Was the dishwashing soap washed off, or was the table cleaned with soapy water where soap residue remained behind? Considering that when we wash our hands, we rinse off all residue, it makes me wonder if rinsing might explain the differing results between hand washing and table washing, when it comes to soap. Or dishwashing soap is just a sad shadow of the studlier hand soap.


What this means for Celiacs
It's pretty much up to us to decide how much this applies to our situation. I think the main thing to note for us is that hand sanitizer wasn't a reliable way to get a protein cleaned off our hands.

I also think we have an issue that the peanut allergic folks don't: many cleansers and soaps have gluten. I'm assuming some wipes might as well, but I've never checked. However, as an informative tidbit on what cleaners are gluten free, a MikeM at GlutenZap tested quite a few products with the EZ Gluten testing strips (sensitive to 10ppm) in June 2009, and the following three cleaners tested negative for gluten.

• 409
• Mr. Clean Multi-Surface Cleaner
• Hydrogen Peroxide (brand not listed)

He didn't list cleaners that might have failed, if any did. His list is worth checking out for the other products he tested as well, for those interested: MikeM's list. Although as usual, ingredients change, processing changes, so be careful out there.

Have fun cleaning the castle!

Avoiding gluten: part I

One thing I wonder about periodically, as a Celiac, is how easy is it, exactly, to get cross contaminated by gluten? Where does it pop up in our food? How hard is this stuff to clean off in our houses? How easy is it to spread from touch?

Some people will pick a cruton off their salad and assume it's safe. Some people won't touch anything that's even been processed in the same room as wheat (raises hand.). But...how careful do we really need to be? I am on a quest to find out, and I'll keep you all updated as I go. To start off, though, here's a little information for the Celiac just starting out.


In the Beginning, there was wheat, and boy do we miss it.

For anyone who is new to the disease, there's a lot to think about. You hear that you have to avoid gluten, and at first, that doesn't seem so bad. Oh, wait, sorry, was I supposed to be telling the truth in this blog? Let me rephrase this then.

At first, it feels like someone just knocked the bottom out of your happy little eating world, stomped on the pieces and then laughed at you while you had to give a speech in front of the school, naked. Loss and frustration and confusion and, when the wrong sort of digestive moment hits, embarrassment and upset. Sounds about right.

After all, it means no more cakes, cookies, bread, dumplings, fried foods, brownies, crackers (that's the first thought, yes?). It sucks. It DOES seem bad. But it doesn't seem hard to avoid, that's more to the point. Really, how much could gluten actually BE in?

We all find out pretty quick that the answer is: nearly anything. It's not as prevalent as corn, to give corn allergy sufferers their props, but gluten is in foods that, to our minds, it shouldn't be. Sausage? Oh, that can have gluten. And chips. And luncheon meat. And broth, candy, fast food, salad dressings, drinks, the list is nearly endless. So we learn our first lesson, and life gets a little crazy for a while as we try to learn the rest.

Lesson 1: Read all Labels -
Learn the ingredients that ARE gluten or are made from gluten and still have some of that nasty stuff left in it (a good ingredients-to-avoid-list is here.). Then read your little heart out every time you buy something. And don't forget to read the labels again the next time you buy the same products, because those sneaky little companies can change their ingredients and suppliers without even consulting us. Terribly unfair, I know, but there you go. We only get to control our own kitchens. Darn.

Lesson 2: Cross-Contamination -
(or Don't Trust the Labels you just spent all that !#*$& time Reading)
Again, this seems even more unfair than changing ingredients, but cross-contamination is the bane of all Celiacs. It's happened to many of us in the 'early days.' You find a food with no gluten ingredients, you clap your hands gleefully and beams of light surround you on your way to the cash register to purchase the food that only took you enough label reading to have earned you a PhD in Ingredient Law School. You get home, you eat it, and WHAM - sick as a dog, cursing the food to the depths of the pit. A quick Google search finds other Celiacs with the same problem because, lucky you, your 'gluten free' food happens to be processed right next to some wheat-heavy mixer that poofs wheat flour into the air 24/7 and spreads it all over your nice, previously gluten free yummy and every other food processed in the same room.

Cross-contamination - it's not just a bad day in the CDC Hibola lab anymore.

So every label that you examined for gluten ingredients still requires a call or an email or a quick check on-line to make sure that it doesn't have hidden sources of gluten where it's processed, or on its machines, or where it's mixed. Except for, of course, the Holy Grail of labels: the Gluten Free Label. Those you can trust to be Gluten Free and go right ahead and eat them. Right?

Let me pause while I wipe the tears of laughter from my eyes. Gimme a sec.

Lesson 3: Gluten Free does not mean 'Gluten Free' -
[Edited to reflect current information]
Currently, the FDA, which regulates most of the food labeling in the United States, has no legal definition of what it means for a food to be labeled 'Gluten Free.'* And what does that mean for us? It means that you can't completely trust a gluten free label. Most companies selling their products in the US aim for 20ppm (parts per million) or less. However, they can pick whatever amount of gluten they want to as their definition for 'Gluten Free.' Although they'd face legal repercussions if they, say, sold normal wheat bread under a Gluten free label.

Sucks to be us, huh?

And just to make it more confusing? Anything from Europe that you might get at, say, an import store has to contain 20ppm of gluten or less to carry a gluten free label. However, their old standard used to be 200ppm of gluten or less, and compliance with the new 20ppm standard isn't required until 2012, so you may still find gluten free European products with higher levels of gluten.

On top of that, there's gluten free beer, which in the USA is regulated by the Bureau of Alcohol, Tobacco, and Firearms, not the FDA. Thankfully, as of last August, they made a ruling that gluten free alcohol has to conform to FDA standards in what it will take to be gluten free. And trust me, as a layman? That was confusing as heck to read about, as many of the GF beer aficionados began talking about how they know now what the standard is: 20 ppm.

I thought for a while that this meant the standard had been decided on, but turns out it was wishful thinking. Still no definition.

And even if there WAS a definition and it was 20ppm? Some Celiacs, including yours truly, seem to react to less gluten than 20ppm, so many GF foods will lay us out flat. So my thoughts on the GF label are this: protect yourself, trust yourself, and remember Lesson 1, when you had that big list of ingredients of what to avoid. Some people, and companies, might have more gluten than expected, they might simply make a mistake about what contains too much gluten, but either way, it will affect YOU, not them.

And some people are, let's be honest, idiots, and you've gotta have more information than they do, so you can know when they are spouting off about something they know nothing about. Like those who claim that ancient strains of wheat will not hurt Celiacs, because the grains are lower in gluten, or their gluten is different, or their gluten is so ancient it's too tired to bother you anymore and is just gonna sit on your couch and watch soap operas for a few days, instead. These strains of wheat may be easier for the gluten intolerant, and a very few people who have wheat allergies seem to be able to try a few of these varieties, but Celiacs? Ancient wheat will still kick our butts.

Curiously, when this ancient wheat was still NEW wheat, in ancient Rome, is when we have some of the first recorded cases of what we now call Celiac Disease. So, yeah, I'm thinking that ancient wheat is still plenty spry enough to be a problem. Grrr. And let us not forget what I blogged about recently, that many naturally gluten free grains seem to be contaminated with gluten, too.


* The other agency that controls labeling is the USDA, which is in charge of labeling things like meat and poultry.




So, what's a Celiac to do to get through all this?

Stay current and stay careful.
(And relax, once you've figured this all out.)

1. Find a good Celiac site with the latest research and news about Celiac disease, foods, and gluten, and read it periodically. Celiac.com and Celiac.org are both pretty current. One thing you will discover is that there are two organizations that are currently certifying products as GF, if a manufacturer is willing to go through their process. The Gluten Free Certification Organization GF seal certifies that a product contains 10ppm of gluten or less. The CSA Seal of Recognition certifies that a product contains 5 ppm of gluten or less.

2. Look out for hidden sources of gluten in your foods, and contact the companies or Google for people who have, and see what the response was. Many will say their food 'contains no gluten ingredients' but that's not telling you about cross-contamination. Sometimes, you gotta push for more information, and if they balk, you may have to say goodbye to the food until you know it's safe.^

3. Be aware of the food around you in a public setting. If gluten-filled plates are being carried over the food you're about to eat, spoons are being used on both GF and non-GF dishes, fruit is cut on a shared a cutting board with the bread pieces, then you're not in a Celiac safe food place. Might be a good time to pass on the buffet and get something GF out of your purse.

4. If you are unsure about a food, especially a flour or grain that is supposed to be naturally GF, there are home test kits that you can purchase on-line to test the levels of gluten. You can Google these kits and they'll pop right up. I am also going to be purchasing a few of these and trying them out on various flours, so whenever I get some results, I'll pass along whatever I find out!

^ A tip when searching for information that other celiacs have put on-line: make sure their information is current (remember that 'changing ingredients' issue?) and that it's aimed at YOUR country. Different countries have different definitions of what is GF. Also, companies have different ingredients lists for the same food, sold in different countries. So sometimes, something that is gluten free in the UK is not GF in the USA. Don't ask me why, as it makes no sense to me, but I'm sure they have their reasons...possibly.

And that's all the lessons we have to cope with for today, anyway. Next time, I'll try to look at avoiding gluten in our own home, and some of the WEIRD places it can hid.

Disappointing

Today was a hard day.

There was a part of me that wanted something I didn't even realize I wanted. Maybe I just persuaded myself that I didn't. Or ignored it, hoping that it wouldn't be an issue. Or maybe I can lie to myself just that well. But today, quite frankly, sucked.

Since about January, my life has been pretty limited. I go out to the store. I go outside. I go visit a friends for an hour or so maybe once a month. And I've been to the movies maybe five times. That's it. I don't go to talks, concerts, restaurants, social gatherings, nothing. Too many places have coffee or other things I react to. Even the places I DO go, I can't stay too long, even with mask in place, because I'll feel too sick. But I've managed. I like the outdoors and I can go there as often as I like. I spend time with my family. I have friends over. I focus on what I HAVE rather than what I have NOT.

However, over the last couple of months, my reactions have been slowly lessening, and so today, I tried something new: a meeting. It was in a restaurant, but it's a private room, and I was planning to go only until the food was served and then leave at that point. I wore my mask. I picked a time to go when the speaker was one I would be fine not seeing. I'll just leave in a couple hours, no big deal, I thought.

They have iced tea and chips and salsa on side tables, but that's it. Or I thought that was it.

I managed five minutes before I started getting a massive headache. I couldn't figure it out. It got worse, and worse, and suddenly I look down and there's a cup of starbucks on the table. I look over and the table against the wall has rows of cups and a few carafes.

"Do you know if that's tea or coffee?"

I don't know why I asked. I was having a migraine coming on, starting to feel shaky and dizzy, and part of me KNEW it was coffee. And it was. I had to leave before the speaker even started talking.

The reaction faded after about 15 minutes outside in the parking lot, everything dulling to a muted ache and flu-like symptoms. My throat didn't even swell up that much, just the headache and other symptoms. That's progress, actually a lot of progress, really.

But still, I find myself SO upset when I think of it. I really thought this would work, and it didn't, and it was something so SMALL. It was nothing more than walking into a building to listen to someone speak, and I couldn't even manage that.

I think about the fact that unless this improves, I can't fly on a plane again. Ever.

I look to Thanksgiving and Christmas, holidays that are all about groups and food and travel, and I have no idea how I'm going to participate in them at all.

I try and imagine meeting other writers and parents, but every time they get together it's at coffee shops and potlucks and I simply can't participate in that.

None of this was on my mind this morning when I went to the meeting, but it is now. It's all sort of crashed down on me in a big landslide of horrible 'what if's.'

I know tomorrow I'll probably be over this. How can I not? Moving on is the only thing you can do, really, and I might as well enjoy what I have or what's the point? But for the moment...I think I'm grieving for what I've lost, and what I might never get back.

Just...a bad day.

Here's hoping that tomorrow will be a much, much better one.

A lovely day

Food my kids can actually eat, that I didn't make!

Note the holy light shining around this miracle.

This morning, I got a call from my husband. "There's a new farmer's market on the corner. You and the kids should check it out today."

Now, you have to understand. When my husband says 'on the corner' he means The Corner. There is only one corner out here that counts, about a mile away, where our gas station/corner store/lending library/deli is. There's one restaurant down the street from it - which shocks me because I have a hard time imagining how it gets enough business - and a hair salon. We just got in a hardware store.

We have lots of people, mind you, over 800, but no real stores. So the farmer's market sounded awesome! There were 6 stalls, but I was giddy, as one had organic produce, two had at least least 1 gluten free offering, and the gal selling gluten-death goodies had a great recommendation for where to find bulk whole grains, although they are whole sale only. I'll have to see if they might be willing to make a deal.

Still, we were able to buy mangos for the kids and an amaranth granola-like bar that was free of all the kids' bad foods. It was so lovely. Well, it was 'okay,' according to the children. Who wouldn't have had to cook it, so I'm ignoring that. I'm calling it awesome. And everyone there is talking about organics and interesting foods - like a little welcome home mat, LOL.

Best of all, as it was outside, with not too many stalls, I was able to go and not wear my mask. That was such a wonderful thing, I can't even express. Every time I meet someone new now, it's usually inside, and I have to have on my silly looking dental paper mask. I'm used to it, but I know it affects how people interact with me.

And frankly? It's freaking hot. I live in a desert. Wearing a mask in the desert feels like being parboiled.

In any case, this has been a great start to the day, finding something unexpected and wonderful when it was just normal and tough a few minutes before. Just lovely. Reminds me to keep going. Never know what's going to be around the next corner!

Gluten Free Alternative Grains NOT gluten free?

NOOOOOOOO!

We're puttering along, feeling safe with our quinoa and rice flour and chickpea flour pizza crust we just made today - which tasted all right, I understand - when I come across this:

Some gluten-free whole grains and flours are gluten contaminated

D:

During tests of other grains, quite a number, it seems, are gluten contaminated. Hey, most of them never claimed otherwise, although the FDA is considering automatically listing them as GF, just because they are not wheat. Yet again, I feel safer than ever that my government is looking out for me. Kinda. Sort of. Not.

I did not need this today! Ugh. None of us celiac and gluten sensitive folks did. Let me list what I consider the most important information from the testing, for avoidance purposes:

The worst offenders included soy flour, which had 2,925 parts per million of gluten, sorghum flour, which was contaminated with 234 parts per million of gluten, and two different brands of millet flour, which contained up to 327 parts per million of gluten. Millet whole grain, buckwheat flour and white rice flour also contained detectable levels of gluten.

I had just been thinking that I had no interest in those Home Gluten test kits, but now? I think I'm going to need to find some, just to see if the brands of flour and grains we're using might be of concern.

I'll post what the results are when we get 'em. There's a lot of brands of test kits, so we may have to search a while. Likely, though, we'll use the the EZ Gluten® Test Kit. That seems to be recommended highly by many gluten free bloggers, and I figure the community tends to be concerned with its own health, so that's a good place to start.

Gosh darn it, though. Just when you think it's safe to eat again. Grrrr.

Food - Always keeping me humble

Today, we thought we weren't doing very badly. We were eating foods that we thought were safe, the kids were doing okay.

Then we let my son have some tea - cammomile tea. Loose leaf, so no gluten issues with the tea bags, but after the tea, my midget starts having a case of the crazies. Terribly upset for no reason, won't sleep, angst driven - the exact opposite response you might hope for from tea.

And after a quick check for ingredients, we find out it contains oatstraw. Also known as groats. Also a possible gluten contamination issue that no one seems to be able to agree on, especially if you react to oats. We don't know if he does yet or not, as we haven't let them have oats yet.
Poor dear. I feel so guilty! Darn it.

Honestly, I wish we had more information. What little I could find was very contradictory and leaves me feeling, as I often do, like I'm going to have to abandon the food until I can figure out what the real story is over the ingredient. Another research project, here we come.

Sigh, guess it's another one for the 'live and learn' column. Somehow, I wasn't expecting such a long column over the last year. :-P

Gluten free, Dairy free, Egg free, Corn free Ingredient list

Before I had my son, I don't think I ever thought about how difficult it was to figure out if something contains an allergen. Truly, why would I? Why would any of us? We all have so much to do, who has time to learn something that you are not going to use in your daily life? But I learned what ingredients to avoid so that my son didn't come into contact with dairy. His reactions were mild, overall, so we didn't have to be quite as strict as we probably should have.

Then we got the celiac disease diagnosis, and strict is the new word of the day.

My mother has asked more than once for the list of what foods we avoid like the plague, so that she could see if there are ANY snacks she could buy for the kids. So, mom, this blog's for you. Or rather, this is for you, dad, to print out for mom, since we both know that the world will end before she actually touches that computer you bought her.

I hope you have a lot of paper

For a gluten free, dairy free, egg free, and corn free diet, these are the ingredients that we have to avoid, to my knowledge. Strangely enough, I am still not a doctor, so any advice and information are strictly from a layman's perspective and not from an official expert. Some foods listed are those that require a phone call to check the safety based on the source ingredients, additives, or processing specifics.

• Artificial color
  
• Ascorbic Acid
• Albumin
  
• Alcohol
• Atta flour
  
• Baking Powder (corn starch varieties)
• Barley
• Barley grass
• Barley hordeum vulgare
• Barley malt
• Beer
  
• Bleached flour
• Bran
• Bread flour
• Brewer's yeast
• Brown flour
  
• Brown Sugar – look for use of Caramel color.
• Bulgur, Bulgur wheat
• Butter
• Buttermilk
• Butter flavoring
  
• Calcium Citrate
  
• Caramel
• Caramel color
• Caramel flavoring
• Casein
• Caseinate
• Cellulose
• Cereal Binding
• cheese
  
• Chilton
  
• Citrate Forms of Citrate include: Calcium Citrate, Magnesium Citrate, Potassium Citrate, Sodium Citrate, and more.
  
• Citric Acid
• Clarifying agent
  
• Club wheat
  
• Cookie crumbs
• Cookie dough
  
• Corn
  
• Corn Meal
  
• Corn Starch – in most over the counter medicines that come in a dry pill form.
  
• Corn Syrup
• Cous cous
• Cream
  
• Crisped Rice
• Curds
  
• Decyl Glucoside
  
• Dextrin, Maltodextrin
• Dextrimaltose
  
• Dextrose (glucose)
  
• Dinkle
• Disodium wheat germamido
• Dried egg
  
• Dry milk solids
  
• Dry roasted nuts
  
• Durum wheat
• Edible coatings
• Edible films
• Edible starch
• Egg
• Egg solids
  
• Egg white
• Egg white solids
• Egg yolk
• Einkorn
• Emmer
• Emulsifiers
• Enzymes
  
• Ethanol
  
• Farina
• Farro
• Fat replacers
  
• Ferrous Gluconate
• Filler
  
• Flavoring - Artificial or "Natural Flavors"
• Food starch
• Food starch, modified
  
• Fu
• Germ
• Ghee
• Globulin
  
• Glucose Syrup
  
• Golden Syrup
• Graham Flour
• Gravy cubes
  
• Groats
• Ground spices - typically spice 'mixtures' are the biggest risk
  
• Hard Wheat
• Heeng
• Hing
  
• Honey - May contain corn syrup
• Hordeum vulgare extract
• HPP
• HVP
• Hydrogenated Starch Hydrolysate
  
• Hydrolyzed Plant Protein (HPP)
  
• Hydrolyzed Vegetable Protein (HVP)
• Hydrolyzed wheat gluten
• Hydrolyzed wheat protein
  
• Hydrolyzed wheat starch
• Hydroxypropylated starch
  
• Iodized Salt
  
• Kamut
• Kecap manis (soy sauce)
  
• Ketjap manis (soy sauce)
• Kiwi (This is just for my daughter's kiwi allergy)
  
• Kluski pasta
• Lactalbumin
• Lactate
  
• Lactic Acid
• Lactoferrin
• Lactoglobulin
• Lactose
  
• Lauryl Glucoside
  
• Livetin
• Lysozime
  
• Macha wheat
  
• Magnesium Citrate
  
• Magnesium Stearate
• Maida
  
• Malic Acid
  
• Malt
• Malted barley flour
• Malted milk
• Malt extract
• Malt Flavoring
• Malt syrup
• Malt vinegar
  
• Maltitol - (also known as Maltisorb and Maltisweet)
  
• Maltodextrin
• Maltose
  
• Mannitol
  
• Matza
• Matzah
• Matso
• Matso semolina
• meripro 711
• Meringue
  
• Methyl Gluceth
  
• Milk
• Milk protein
  
• Mir
• Miso
• Mixed Trocopherols
  
• Modified Food Starch
• Modified Starch
  
• Monosodium Glutamate (MSG)
  
• Natural flavoring
• Natural flavors
• Natural juices
  
• Nishasta
• Non-dairy creamer
• Non-fat dry milk
• Nougat
• Oat straw
  
• Opta
  
• Oriental Wheat
• Orzo pasta
• Ovalbumin
• Ovoglobulin
• Ovomucin
• Ovomucoid
• Ovotransferrin
• Ovovitella
• Ovovitellin
  
• Pasta
• Pearl Barley
• Pectin
  
• Persian wheat
• Perungayam
• Polish wheat
  
• Polylactic Acid (PLA)
  
• Polysorbates
• Potassium Citrate
• Poulard wheat
• Powdered Egg
  
• Powdered Sugar - contains corn starch
• Pregelatinized starch
• Protein hydrolysates
  
• Rice malt
• Roux
• Rusk
• Rye
  
• Saccharin
  
• Seafood analogs
• Seasonings
  
• Seitan
• Semolina
• Shot wheat
• Silici albuminate
  
• Simplesse
  
• sirimi
• Smoke flavoring
• Soba noodles - check, some are pure buckwheat, which is safe for us
  
• Sodium Citrate
  
• Sorbitan Monostearate
  
• Sorbitol
• Sour cream
• Sour milk
  
• Soy sauce
• Soy sauce solids
  
• Spelt
• Sphingolipids
  
• Spirits - check source ingredients and additives
• Sprouted wheat or barley
• Stabilizers
  
• Starch
  
• Stock cubes
  
• Strong flour
  
• Sucralose
• Suet
  
• Sweet’N Low
• Tabbouleh
• Tabouli
• Teriyaki sauce
• Timopheevi wheat
  
• Tocopherol (Vitamin E)
• Triticale
• Triticum vulgare (all varieties)
• Udon
• Unbleached flour
  
• Vanilla Extract
• Vavilovi wheat
• Vegetable broth
• Vegetable gum
• Vegetable protein
• Vegetable starch
  
• Vinegar, Distilled White
  
• Vitamins
• Vitellin
  
• Wheat amino acids
  
• Wheat and Whole Wheat (Buckwheat is NOT wheat)
• Wheat bran extract
• Wheat germ extract
• Wheat germ glycerides
• Wheat germ oil
• Wheat grass
• Wheat nuts
  
• Wheat protein
• Wheat starch
• Whey
• Whole Egg
  
• Whole meal flour
• Wild einkorn
• Wild Emmer
  
• Xanthan Gum
• Xylitol
• Yogurt
  
• Zein

Corn free list is from: Live Corn Free
Gluten free list is from: www.celiac.com
Dairy free list is from: www.dairyfreekids.com
Egg free list is from: kidshealth.org

I think that looking at this list, most people could understand why shopping can take a long, loooong time. Cooking from scratch looks easy by comparison sometimes, eh?

Interesting research for Auto-Immune Disorders

I thought this was a very interesting bit of information, about how studying Celiac Disease is showing information about other auto-immune disorders.

http://www.allergygrocer.com/blog/Celiac-Research-Common-Immune-Disorders/

The basic discovery is this. They are beginning to think that all auto-immune disorders have three things in common.

1.There needs to be a genetic issue involved - the gene that carries the flaw for the disorder.
2. There needs to be an environmental trigger that sets off the disease.
3. Auto-immune folks seem to have a gut that is more permeable than most.

Reading this, it makes me think of autism, where so many parents noticed a change in their children after vaccines (a trigger?), or how many Celiacs have food issues (permeable gut?) or how many sufferers of MS seem to do better on a GFCF diet (again, the gut?).

Makes one think.