Gluten Free Defined?

A recent response to my "It Still May be Edible" post got me thinking more about the term Gluten Free. At face value, Gluten Free would be interpreted as being completely void or free of gluten. However, this is not the case on a number of fronts.
All grains, including rice and corn, contain gluten. I myself was surprised when I first learned of this. However, as shown in the table in this article, wheat, barley and rye come from a different branch of the grain family tree. http://www.thorne.com/altmedrev/.fulltext/10/3/172.pdf (See Figure 1. Taxonomy of Common Dietary Grains and Table 2. Gluten Content of Various Grains).
This then brings us to the discussion of oats. Oats in the Celiac diet are controversial. Many celiacs are able to include uncontaminated oats in their diet. The fact that some are not able to consume oats, maybe due to oats being a closer relative to wheat, barley and rye vs rice and corn. However, when it comes to labelling... it then depends on which country you live in. The FDA in the United States currently does not include oats along with wheat, barley, and rye when labelling something gluten free. (See #16)  http://www.fda.gov/Food/LabelingNutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm111487.htm#q11 
In Canada, if a label says it is gluten free, oats is included along with wheat, barley and rye as being prohibited. http://glutenfreediet.ca/blog/?p=176 Not even uncontaminated oats is allowed to carry the Gluten Free label in Canada.
The next eye opener is broken down into parts per million (ppm). A gluten free label in Canada and the United States, means that there is no more than 20ppm of gluten in the product. Gluten free does not mean that there is zero gluten in the product. In the European Union gluten free standards previously allowed for no more than 200ppm of gluten, but have now revised these regulations to 20ppm- however, these new rules will not be enforced until January 2012. Austrailia and new Zealand on the other hand, reserves the Gluten Free label for products containing no detectable traces of gluten, and is the strictest in the world. This label requires a measure of gluten that is in the range of less than 3 to 5ppm! http://www.facebook.com/topic.php?uid=100494046660564&topic=272 Many countries do not have any standards in place for gluten free labelling. http://en.wikipedia.org/wiki/Gluten-free_diet 
There are also many products that do not contain any ingredients which are of concern, and yet are not labelled as being gluten free. This could be be as a result that it is made in a plant where wheat or other problematic grains are being used, or that the manufacturer does not want to go to the trouble of getting a product labelled gluten free because of the compliance that would then be involved.

While standards are improving and becoming slowly clearer, there are some Celiacs I have discovered that feel the need to go grain free. This means that not even corn or rice are eaten. These individuals find they are still symptomatic even though they follow the current accepted gluten free diet. Going grain free thus virtually eliminates any gluten in the diet from being ingested. http://www.canada.com/victoriatimescolonist/news/life/story.html?id=44ca5fc0-8f4b-4833-b1b2-0b258b608961&k=21125

Essentially what Gluten Free eating boils down to, is what you feel is best for your personal health. Gluten free is a relative term to guide you, that is backed up by the food regulations where you live. Whether that includes oats or not is up to the individual Celiac and their personal "gluten free" diet. Gluten free does not mean that no gluten is being consumed- rather it is an accepted amount of gluten that is suitable for most Celiacs, proposed by the medical community and enforced by government. On the flip side, something that does not have a Gluten Free label does not necessarily mean that it is not safe to consume either. Use your educated judgement where labels have failed to keep up with the times. Therefore if you feel that your risk is low for consuming gluten in products that have not been labelled Gluten Free (of course reading your labels each time), then do so if you feel comfortable. If you feel you need to remove all gluten, go grain free. The best judge in your own health is often yourself. Be informed. Go with your "gut".

A Hidden Source of Gluten You May Not Consider

OK- you're being a "good" Celiac. Following all the rules. Reading your labels. Not cheating on your gluten free diet. Bravo! Keep it up!!
However, don't let your guard down just yet. There is something other than food that you may not have considered as a potential source of gluten...Medication.
"Really?" you may say..."does it ever end?". Yes, this too you must be vigilant in. Medications often contain fillers to deliver the active ingredient. These fillers are made of starches, and can come from a variety of sources- including wheat.
Though you may be feeling insecure again with this news- that even medicine may may you ill (when it is supposed to make you feel better not worse), don't panic just yet. There are resources out there to help you navigate your way through this too.

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/PlogstedArticle.pdf

http://www.dummies.com/how-to/content/glutenfree-medications-and-supplements.html

http://www.glutenfreedrugs.com/

Note: Supplements and Vitamins fall into this category too.

Celiac Awareness- Fighting Against the Fad

It seems that there is more awareness of Celiac Disease these days. Along with this awareness, more people are becoming diagnosed. In turn, there are more companies producing gluten free products and many restaurants are willing to be acomodating. All terrific for someone living with Celiac Disease for years, or those new Celiac's with former mystery medical conditions. BUT...there is a dark beast looming in the shadows. 

Over this past week, I have come across two disturbing articles. In one instance, a prominent chef apparently disregarded requests for gluten free meals- knowingly feeding these patrons gluten. He supposedly stated this himself on his facebook account, saying that he thought that the whole gluten free thing was in people's heads. The second article is unfortunately a proven case. This particular gentleman thought he'd make money by selling bread to Celiac's telling them it was gluten free, when it was in fact NOT! He has been tried, and sentenced to a minimum of 9 years and a maximum of 11 years. While I think his sentence is a little excessive (since often rapists, pedophiles, and murderers get lighter sentencing than this), I believe it is the start to better regulation and accountability in the gluten free industry. 

So why would these individuals be so blatantly deceptive?... For one, though there is more awareness out there than ever before about Celiac Disease, it seems that the necessity of the Celiac gluten free diet has been hijacked by those who are following the latest health craze or diet fad. Don't get me wrong, I am not a health nut hater- I think it just has caused some confusion with needing to be gluten free and wanting to be gluten free. In either instance both parties have the right to eat a gluten free diet, and violating that right is wrong. But it seems that living gluten free by choice has begun to gloss over Celiac Disease- thus you have people out there that begin to believe being a Celiac is nonsense, and/or simply wanting to cash in on the latest health craze (since gf food tends to be expensive). Both of these ways of thinking are dangerous to a Celiac. Being that it is an autoimmune condition rather than an allergy, some may also leap to the conclusion that since a Celiac doesn't react immediately to gluten exposure that they must be one of these health nuts- they can charge more for their "gf" product, or simply be lazy and not go the extra mile to avoid gluten...that no harm will come to the individual ingesting gluten. Not eating gluten free does do damage to a Celiac's health!

So what is a Celiac to do?... Continue to speak out. Clarify. Specify. While I think the message is getting out there about eating a gluten free diet, I think it is important to explain to people what being a Celiac is when the opportunity presents itself. I recently informed a curious Dairy Queen employee and a customer who both asked me more about "what is Celiac Disease exactly?". Word of mouth is a powerful tool, so don't discount your mini campaign. It may also be helpful to encourage Celiac Associations become more involved in the community at large- speaking to restaurants and grocers; informing them, offering tips and/or training rather than solely focusing on the Celiac's themselves. Regulatory bodies may also jump on the band wagon of "correct" Celiac awareness too in the wake of the fraudulent bread conviction. But in the meantime, put your own voice to work. Speak out. Lobby for change where needed. Inform one person at a time.  

http://www.foodista.com/blog/2011/03/30/chef-admits-lying-to-gluten-free-diners/ 

http://www.newsobserver.com/2011/04/12/1125084/durham-man-who-sold-fake-gluten.html

Update: April 21st, 2011
Here is an article related to the need to eat gluten free versus that want of eating gluten free. A positive explanation and discussion about the topic. Thought this link would give some balance to the two previous negative ones.

Cross Contamination Cont...Eating Away from Home

When my daughter was diagnosed as a Celiac, it was a while before she gathered the courage to eat at a restaurant or even a friend's house. She is a particularly sensitive Celiac, so the thought of leaving her meal in someone else's care was scary...at first.
The easiest transition for my daughter was having a meal at a friend's house. Her friends became advocates for her, informing parents of her dietary needs. As an adult however, the only advocate we are likely to have is ourselves. Though you may feel at first that your are imposing on your hosts with your gf needs, don't fret. You can't help that you can't ingest gluten- so why feel guilty?
Any gracious host will be more than understanding and accommodating. Just don't spring it on them when you arrive at the door. Because if you leave your host in the dark, the only one who is going to suffer is you- being stuck with carrot sticks or ingesting gluten. Instead make a courtesy phone call, thanking them for the invitation and explain your gf needs. If they balk at this, then they aren't likely worth your time.
If your host is unsure about what to avoid in the kitchen, offer emailing a list, or direct them to a web listing of what to watch out for. Living Without magazine also has a list of foods to avoid in every issue near the back. In addition, ask the host if they are unsure whether an ingredient used is gf or not that they allow you to read the label. That way you can enjoy your meal in confidence, lacking the nagging worry of how you will feel in the coming hours.
Another tip- serve yourself first, or ask your host to allow you early entry to the kitchen or table. There may be things like bread being served, and crumbs (or serving spoons) can travel to undesired destinations such as your plate. With practice, you and your host will continue to have an open dialogue about avoiding gluten- but be their polite gentle informative guide.
Next stop on the GF Culinary Tasting Tour...Restaurants! Understandably, eating at a restaurant (whether 5 star, fast food or mall food court) can be distressing for a Celiac. There are so many more elements involved- I'm starving, where can I eat right now? Does the chef and staff truly understand what Gluten Free means? Is it a busy restaurant/time where mistakes are more likely to be made?
To get yourself started and back to enjoying eating out, refer initially to your regional celiac association. They will usually have restaurant listings that are gf friendly, and in most cases the staff are well trained in gf awareness. Plan ahead by choosing a restaurant on the list. Then call to see when they tend to be less busy, making a reservation if necessary. When you are seated, ask if a gluten free menu is available- if not, then tell your server that you are a Celiac and ask what they recommend that can be made gluten free. Remember, just because a restaurant is on a gf friendly list doesn't mean it waves your responsibility of informing staff of your needs. Very few restaurants exist that are completely gf.
When you order be very clear that your meal needs to gf, but be polite and make a point of saying thank you. I have found that politeness helps to further keep gluten at bay because your server is more inclined to be more vigilant. Simply being polite, I have had servers catch kitchen errors before the meal even reached the table. However, don't be so polite as to not question your meal when it comes. If it looks suspicious, ask. Send the meal back if needed, requesting a freshly made one.
Here are a few additional things you can do or look out for when out and about and eating gf:
1) Is it deep fried?...I have encountered a few restaurants that recommend items that are deep fried, but do not have a separate fryer for battered foods. This is not gf eating- you cannot cook gluten at a high temp to neutralize it, nor is the gluten going to stay in the oil and not your food. McDonald's is one place that does have a separate fryer for french fries vs. other battered/coated foods.
2) When there is doubt about an ingredient in a meal you would like, avoid and choose something safer, or when possible ask to read the label. I have had many places graciously pull out big jugs to let me read ingredients.
3) Avoid buffets. They are usually not gf, and if there happens to be gf items the likelihood them remaining gf is nil.
4) Avoid hard ice cream and stick to soft serve or frozen yogurt. Hard ice cream is exposed to cones that are not gf. Soft serve ice cream on the other hand comes from a dispenser keeping it gf. (Still ask about ingredients when in doubt though.) Then...ask the server to remove the nozzle on the dispenser and clean it for you- because the nozzle has come into contact with cones and other non gf ingredients. I have visited Dairy Queen on numerous occasions with my daughter, state that she is a Celiac and that ingesting minute amounts of cookie, cones, etc will have her doubled over in pain in an hour. 99% of the servers have be fantastic about cleaning the nozzle. Only one told me to "get over it".
5) Beware of sauces. Ask about ingredients. I have had many servers happily ask the chef on our behalf. When in doubt though, omit or or order a different meal.
6) Ask if your meal can be brought out separately. Some servers like to stack plates on their arm- however this increases your risk of non gf items making their way to your plate.
7) I often stress that my daughter is highly sensitive to gluten, and that croutons cannot be picked off if placed in error- that a single crumb will cause hours of torture. At times I state that she is allergic, though this is a lie- but it seems to get the point across since many are ignorant of what gluten or a Celiac is. And I am descriptive. I tell people anything with bread, cookie, cracker, etc is toxic to my daughter.
8) Ask if it is possible for a special meal that is not on the menu. Sometimes it may be a bowl of fruit, or a lettuce salad with chicken. But understand that it won't always be possible. On a number of occasions, my daughter has been made to feel like a queen- being told they would make her her own special meal.  Once, the chef came out to greet her, telling her he would make anything for her that she wanted, on or off menu- even bread. None of these places were listed on gf recommended restaurant lists, and in fact were in out of the way places. Only one was a four star establishment.
9) Have a back up plan. This means carrying a gf granola bar or other gf snack that can be easily carried with you. This is not ideal, but it prevents you from passing out from hunger in case you cannot locate a place that can be accommodating.
Now what are you waiting for?... Get out there and eat!