Beginner's Guide to Going Gluten Free- Part 1: What is Gluten and How to Avoid it

As one who is known among my friends and in my wider social circles as being off gluten, when friends get told that they or their kid needs to go off gluten, they often turn to me asking for help. It's a scary thing, overwhelming at first, and people don't know what to do. I've long wanted to write a beginner's guide to going off gluten; as much as I want to help each time, I'm not always available to give as thorough of an answer as I'd like, so having a prewitten post with a link to share would prove useful. The other day, my friend, Dani, post her child's Celiac diagnosis asked for some advice on how to weather the transition most smoothly. This post is dedicated to you Dani, with the hopes that this required change not be too difficult.

So, you've been told to go off gluten, and/or been given a Celiac diagnosis. Now what?
The most frequent question I get from people who know I'm off gluten (5.5 years already) is 'What do you eat? If you can't eat bread what do you fill up on?' I'll be honest, I find this question question quite amusing since even before going off gluten I never cared much for bread, and my diet was never based on it (could be I subconsciously realized it didn't make me feel good and hence avoided); however, when someone's diet does revolve around bread gluten free diets are far more daunting.

Before I can get into the details of what you can eat, we need to cover what you cannot.

What is Gluten?

In short, gluten is a protein found in wheat, spelt, barley, and rye, and for the sake of simplicity we'll include oats in the list of no nos, as it has a similar protein to gluten and many are sensitive to that protein as well, and even if they aren't, most oats sold are gluten contaminated.
If you need to stay away from gluten, you can't eat any foods made with any of the aforementioned grains, and that includes most breads, pasta, cookies, cakes, pretzels and flours sold in the grocery store. Those are the obvious places gluten are, but the hidden places gluten often is lurking is under the name of malt, or barley malt- which is why most cereals are off limits, even if they seem like they should be fine as they are made from non gluten grains, such as corn flakes or rice crispies. Soy sauce and tamari sauce are generally made with wheat gluten, as are foods made with soy sauce such as terriyaki sauce.

Gluten can be found in so many places that I can't even begin to list them all (I was surprised to find it in tortilla chips, wasabi, licorice, sour belts, and falafel balls when I first went gluten free) so you'll need to start off by reading labels. Every label. Every ingredient list. See if it lists anything like wheat, spelt, barley, rye, malt, or something suspicious like "starches". Don't assume that because it doesn't seem like something that would have gluten, that it is gluten free, because assumptions can be very wrong and can make you sick.

Reading labels also helps in another way. Many, though not all, labels of packaged foods will contain allergy information. If there's gluten in it, this would be where it would tell you this. If there is allergy information listed and it does not mention gluten, then you can be rest assured that it is safe. Allergen information also will tell you if a product contains traces of gluten, which is important information, but depending on the reason you're off gluten, may or may not make a difference to you.

What are Traces and Do Traces of Gluten Really Matter?
Let's speak about traces. Traces is where people really vary in how strict they are in terms of how gluten free they are, and it all depends on why you are off gluten.

Why Do People Go Off Gluten?
Some people are off gluten because it affects their stomach; they feel bloated and gassy after eating gluten, or otherwise have stomach pain. This can be without any specific diagnosis, but they've discovered that they, overall, feel a lot better when they avoid gluten.

Other people have diagnosed stomach problems such as IBS, IBD, and Crohn's disease and Ulcerative colitis, who are able to manage their illness by avoiding gluten.

Other people are off gluten because when their body comes in contact with gluten proteins, it sets off an autoimmune reaction that causes the body to harm itself and start destroying parts of the body.
The most common of these autoimmune reactions is known as Celiac disease, and it causes the body to destroy the villi in the intestines that are used to be absorbed. People with Celiac have terrible gut damage that is visible via an endoscopy, in addition to antibodies against gluten in their blood stream, and it causes many gastric issues, among many other health issues. When people with Celiac stop eating gluten, it allows the body to start healing the damaged gut (this can take months, if not longer). When someone with Celiac eats gluten again, it causes the gut damage to come back and healing, once again, takes a really long time, and they suffer a lot until they are healed.

Other non Celiac auto-immune diseases have been shown to be improved, if not completely healed, by eliminating gluten from the diet. Most well known examples of these are Hashimotos thyroiditis, as well as Grave's disease. Unlike Celiac, where the body attacks the intestines, in these two diseases, the immune system starts attacking the thyroid. Studies have shown that there is a connection between these thyroid autoimmune diseases and gluten intolerance, and many find that they are able to stop it in its track by cutting out gluten entirely. I know people who went off gluten for this reason, and they no longer have the anti-thyroid antibodies in their blood, and their thyroid starts functioning properly again, or at the very least, better than before.

What are Traces of Gluten, and Where are They?
Once upon a time, when I first went off gluten, I didn't realize that traces of gluten was remotely an issue. I felt mostly better but kept on having recurring stomach issues, even if not as frequently as I did before I went off gluten.
Then, for a time, I was able to be symptom free. I went to a party, and someone had placed some gluten crackers along a mound of tuna fish. I removed the cracker and took the tuna, and felt so horrible after that, that I realized that even if I couldn't see the gluten, even if I wasn't eating actual foods that had gluten in them, if they touched gluten and had traces of gluten, even gluten particles that were invisible to the naked eye, it still could make me react badly. I tested this in quite a few places and situations, and I came to the realization that I couldn't just avoid visible gluten, but even things that touched gluten.

There are traces of gluten in lots of things kept in the average house. If you have a spoon that you used to mix pasta, and then you used it to stir the tomato sauce without washing it well, that sauce is then gluten contaminated, has traces of gluten in it, and will make people who are sensitive to gluten traces react badly.
If you have spreads that people put on bread, such as mayonnaise, mustard, peanut butter, butter, honey, hummus, or a variety of other condiments, these are almost always gluten contaminated, as people dip their clean knife into the container, spread the condiment onto the bread, dip it back into the container, and spread some more. (People are very unconscious about this, as they aren't getting germs in it, so they don't consider it double dipping.)
If you're having a communal meal and someone eats bread over their plate, drops bread crumbs on their knife, and then uses that knife (that looks visibly clean) to take something from a communal dish, that communal dish is now gluten contaminated.

Social Confusion and Offense Regarding Gluten Cross Contamination
In short, it's really hard to avoid gluten contamination, and I'll be honest, it can cause a lot of friction between people. One person I know, who is a very clean and proper person got so offended when I mentioned gluten cross contamination, because she protested "My food is not contaminated!" not realizing that I wasn't implying that it was spoiled or dirty, just that it had traces of gluten in it now.

Other times, I asked clearly if people at the table could be careful to not touch the serving spoons to their bread or plate and then put it back into the communal dish, and they reassured me that they'd be careful not to, and then at the same time they were telling me that they were being careful, they were busy spreading the hummus onto their bread with the serving spoon, then returning it to the communal dish.
People really don't do this intentionally or maliciously at all; its just that when you don't need to avoid gluten, certain habits get so ingrained that you do them subconsciously even when you are consciously trying to not do so.
Because people unknowingly do things with food that can make a gluten sensitive person sick, you do need to be vigilant when it comes to things, but this can cause much offense too, as people get upset that people are watching them like a hawk instead of trusting them, and if you spot someone about to cross contaminate foods and you ask them not to, that also can hurt their feelings.

To preempt such issues, when there is a communal meal, I find it prudent for the gluten free person (or people) to serve themselves food first (and enough so that they don't need to take a second serving), and then let everyone else do what they want with the rest of the food, and just assume that anything on the table from them on is gluten contaminated.
This also can cause social issues, because it looks like you're not only insanely rude, but also piggish for taking so much in one go, but at least people seem to be somewhat understanding when you announce that you're very sensitive to gluten, and you're just taking first to make sure you got food before any gluten crumbs touches any of the food.

When I have guests at the table in my own home, and the guests are eating gluten, I put all those eating gluten at one end of the table, and I make sure to have two sets of serving dishes- one at the gluten eating end of the table, and one set right near me, so that they can do what they want with their serving dishes, and I just make sure that the ones near me stay gluten free.

Can Gluten Free People Eat Traces of Gluten?
Store bought foods, as I mentioned above, often list in the allergen information that there may be traces of gluten in the food. May be are the key words here, and make all the difference.

Whether or not people off gluten need to be wary of traces of gluten depends why they avoid gluten.

If someone has Celiac disease, they are supposed to avoid all traces of gluten, including cross contamination and even potential cross contamination. Just a little bit of gluten, even not much more than 20 parts per million of gluten diluted among everything else (see more about that here) can set off their immune system and reverse months, if not years, worth of healing they'd managed, and can cause people to suffer for a long time until, once again, their body starts healing itself. Some people can have a relapse from eating foods with as little as 5 parts per million of gluten in their food.

People with other autoimmune diseases should also be prudent, because their autoimmune disease can flare up again as well even from traces of gluten.

When it comes to non autoimmune issues, it is a little bit more up in the air, and whether or not someone should avoid traces of gluten would depend on how they feel.
When people first go off gluten, they should try to avoid all traces of gluten, including the miniscule amounts of gluten in foods cross contaminated, and packaged foods that say "may contain traces of gluten". Once they are healed and feel all the way better, I would tell them to experiment and see how it makes them feel.
For myself, with diagnosed IBS, I personally discovered that cross contamination when it comes to spreads and crumbs makes my stomach issues return, but packaged foods that say "may contain traces of" don't bother my stomach.
Other people, with other diagnosed stomach issues, or just who feel better off gluten should pay attention to how they feel. Again, start off by avoiding traces, then experimenting with what they see affects them negatively, and only be as strict as they need to be.

As for Celiacs, they absolutely need to avoid things that were cross contaminated in homes, restaurants, etc... but with packaged items that say may contain traces of gluten, it is worth checking out further, by calling companies and finding out what they mean by writing that on their packaging. Sometimes it just means that it was made in the same factory as gluten items were made, so they can't guarantee that absolutely no gluten ever touched it (they don't want to take the responsibility), even though there likely is no gluten in it, and other times there likely is gluten contamination because they are produced on lines very close to each other, or even the same line. (While I do eat most foods whose packaging says it contains traces of gluten, there are some brands that sell puffed rice cereal, where I've seen puffed wheat inside the bag of puffed rice, so I won't touch that brand.)

If someone with Celiac (or other auto-immune disease) does their research and feels that a certain package labeled as "may contain traces" should be fine to eat (even though this goes against the recommendation of doctors, Celiac organizations, etc...), it would be prudent to do an antibodies blood test before introducing these foods into their diet, and then test again afterwards, making sure it hasn't gone up, so you can verify that you aren't damaging your body.

Even if you do avoid foods that say may contain traces of gluten, and just eat foods certified gluten free (less than 20 parts per million of gluten), that isn't a guarantee, especially if you have Celiac, as some people react to even less gluten than that. It really would be best to avoid packaged foods, and just use all fresh items that you can wash off well, or things that are labeled less than 5 parts per million of gluten if, even after avoiding gluten religiously you still have symptoms, but I wouldn't tell anyone newly diagnosed with Celiac to be that strict, only if they already were strict avoiding traces and their health issues (and raised antibody levels) persisted.

Being Gluten Free Out of the House
After hearing all about gluten and cross contamination, you might wonder if it is remotely possible to be able to eat gluten free out of the house, like at restaurants, weddings, or as a guest, and I'll be honest, it isn't easy.
For one, people make mistakes. They think they know what they're doing, but they often don't realize it and do things that can make you sick. For example, I've been to restaurants who, when asked to leave the wasabi off my plate, they put it on and then remembered that they shouldn't have, so they then took it off. Gluten contaminating my food that way.

Or there was that time when I was at a wedding, and I spoke to the chef and tried to figure out what I could eat, what food had gluten and what did not. I went over each dish and asked him what had flour, what had bread crumbs, etc. I asked him if certain dishes had soy sauce in it, because that also is gluten, and he said they had no soy sauce. Ok, after going through all those questions, I ate the food that he said didn't have flour, bread crumbs, soy sauce, etc... but it tasted suspicious, and I asked him afterwards, if that didn't have soy sauce, what was the flavoring, what made it brown? "Teriyaki sauce" he tells me. Seriously. Teriyaki sauce is made from soy sauce, and hence has gluten in it. I got so sick after that; it was awful.
So yes, you need to know that you need to be very, very, very specific with your questions and assume nothing. Don't assume any chefs have any idea what gluten is, break it down to very little details, minutia, asking not just if it contains soy sauce, but teriyaki sauce, zaatar spice mix, flour, bread crumbs, corn flake crumbs, soup mix, etc... Or ask for specifics what exactly the ingredients are in certain dishes.

When going to restaurants and weddings, I've gone to the kitchen and spoke with the chef myself, and if the chef wasn't sure about something, I've had them bring me the package of whatever seasoning mix or soup mix or sauce they used, so I could check the label myself.
Fortunately, there are more and more restaurants that are gluten aware, and since that disastrous teriyaki incident, I've not had another similar issue. If there are local gluten free associations, message boards, etc... they're often good sources of information about which restaurants are actually knowledgeable about keeping things gluten free and free from cross contamination, and which are not.

Some restaurants, while not necessarily knowledgeable about gluten free, are willing to work with you so you can eat there safely. A nearby burgers place, for example, toasts their bread on the grill, the same grill that they use to cook the burgers. But their burgers themselves are gluten free. They happily cleaned the grill off, and even showed me the final result (to make sure it was a good enough job), before cooking my burger to make sure I could eat the food.
Places that have fries, you can ask them to see the package that the fries come in (or the ingredient list), and then ask them if they use the same oil to fry french fries as well as other things (like onion rings or shnitzels). If the fries are fine and the oil is used only for french fries, it should be fine to eat them there, even if they aren't officially listed as gluten free.

Lastly, when going to restaurants that seem to be very gluten based, like pasta restaurants, or sandwich places, don't assume that there will be nothing there you can eat. It is always best to call beforehand just to make sure, but of the last two times I went to a nice restaurant, one time it wasn't listed anywhere on the menu but they told me nearly all their pasta dishes (minus the ravioli and tortilini) could be made gluten free (for no extra charge, even). And one time they said that if I'd called in advance and made that request, they would have had gluten free pasta available to make me gluten free pasta dishes.
And ask, ask, ask about ingredients. Ask what sauces are in each item on the menu. Ask if there are any croutons. Don't be afraid to take up too much of the waitress/waiter's time (within reason, of course) with your questions- better be sure that the food is fine before you eat it- your health is worth it.

And as for eating at friends, I find this gets more complicated than restaurants, even, because of the cross contamination that goes on. I find it best to offer to contribute a dish or two to be sure that the food is fine. And when asking what they can make, I tell them if they keep the food as simple as possible, straight produce, meat/chicken/fish, and plain (gluten free) grains, and no bottled sauces and just simple one ingredient spices, that's the best way to keep things gluten free. And I ask for no peanut butter, tahini, mayo, mustard, honey, or anything else made with spreads.

I know it can seem overwhelming and scary, but you can do it!

Coming soon: how to make your house a gluten free home, so that you know what yes to eat, not just what to avoid.

Are you or a family member gluten free? How long have you been off gluten? Did you find the transition easy or difficult? What would you say is the biggest tip you'd suggest to people who are newly diagnosed with Celiac or gluten sensitivity?