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