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Living Gluten-Free as a Teenager

Last Updated on by the Celiac-Disease.com Staff 2 Comments

I have discussed traveling gluten-free for teens and school lunches for kids/teens. Now it is time to talk about life.  By life I mean day-to-day living – hanging out with friends, going to movies or the mall – teenager stuff. As your child grows, it is impossible to be in control of their every meal. It is for this reason that I started teaching my son, from when he was diagnosed, about what he can & can’t eat.  I have given him every tool possible to make safe food choices while he is away from home.

My son frequently spends the night at different friends’ houses. I try to feed him before sending him over to eliminate part of the need for food while he is there or away from home. Some parents call me or I will call them to see what they have planned.  It all really just depends on the time of day that my son will be with them and for how long he will be gone.  I can usually tell right away who gets it and who doesn’t. Yes, I could show up and sit down to teach a gluten-free diet class, but my son may run away if I were to attempt that.  My next best weapon is my son.  I teach him and prepare him.  I ask what they are doing & supply the necessary snacks.  If they are just hanging out at home I might just send along some cookies, baked goods, or popcorn (before braces).  I will also pack a Carnation Instant Breakfast – which only requires a glass of milk or a Think Thin bar. Small things, but they will definitely tide him over until I can get him home in the morning (which is really afternoon in the teen world).  My son is really good with reading labels & if he chooses not to call attention to himself, he just goes without.  He doesn’t starve.  If he is hungry, he always knows he can have a glass of milk or orange juice.  Eggs are another good “staple” that most people have in their kitchens.

If my son and his buddies head out the to movies or the mall, things can get a little more complicated, but I have learned to sit back & watch to see how he navigates on his own. My son is aware of what candy he can eat and what drinks he can have at the movie theater. There are so many choices at the theater, that finding something that is gluten-free has never been a problem for him.  He does not eat the popcorn (not only due to his braces, but it is too hard to verify the ingredients). When they go to the mall, there is a food court and Chick-fil-A is one of the places my son knows he can get something safe. My son even chose a salad the last time he was there!

I think there have really only been 1 or 2 times that we have had difficulty feeding my son while he was gone with his friends and that was when he went to a local amusement/water park.  Most of these places have strict rules in place about bringing food into their parks and searching for patrons upon entering.  I have copies made up of a letter from my son’s doctor with his diagnosis & the need for him to follow a strict gluten-free diet outlined in it.  I always send this along with my son when he goes to places like this. I just pack it right along in his lunch box or cooler that I pack his food in.  He has had several of these outings now with no trouble at all bringing the food in.

Coming up in May, my son will be taking a trip to Washington DC with his school.  I have already talked with the tour coordinators & they assure me that other gluten-free teens have successfully gone on this trip.  I will make sure to write up a report on how it all goes when my son returns.

Introduction to the Gluten-Free Diet

Last Updated on by the Celiac-Disease.com Staff 25 Comments

The Gluten-Free Diet Guide

Celiac Disease. You get the diagnosis, and for many of us, it comes as a complete shock. Maybe you knew something was off in your body but didn’t think the answer would be that it is caused by the foods you are ingesting. Maybe you had one of the several common celiac symptoms from anemia to weight loss to fatigue. Or maybe you were someone who has a family history of celiac disease and was just waiting for the official diagnosis to get on the road to healing. People are diagnosed at all ages, from infants to the elderly.

Even if we were half expecting it, it is a complete life change that one cannot really comprehend until you are forced to experience it yourself.  It seems the common story is that once you get the celiac diagnosis, either by blood work alone or via endoscopy (which looks at the villi lining the intestines for damage) your doctor will tell you to follow a gluten-free diet from now on and simply send you our way.

Many doctors, including numerous gastroenterologists, are still under the belief that celiac is an uncommon occurrence and have a lot to learn about the disease and the many ways it can present itself.  If we are lucky, we may get a handout about the disease, be told we need to stay away from gluten, or maybe get a referral to see a dietitian to go over some of the basics of the gluten-free lifestyle.  If you find yourself in this situation, this is a good time to ask about what vitamins and supplements you should take, since many of us with celiac have low levels of one or several essential vitamins.

The first thing you’ll learn is that celiac disease is a genetic disorder caused by the body’s immune response to gliadin, a protein found in gluten, which is found in wheat, barley, rye, and even some oats. Therefore, it is found in many processed foods, personal care products, medications, and even arts and crafts. According to the University of Chicago Celiac Disease Center, a prominent international organization of experts in the field, celiac disease is, “an inherited autoimmune disease that affects more than 3 million Americans”.  It is believed that 1 in 133 people in the United States have the disease but only 10% actually know they have it, with rates being higher if one has a first-degree relative with the disease.  It is also found that there are higher rates of the disease in people with European ancestry, although people from around the globe are known to have it as well.

[Read more…] about Introduction to the Gluten-Free Diet

Surprising Ways Celiac Disease Can Manifest Itself

Last Updated on by the Celiac-Disease.com Staff 5 Comments

People often tell me stories of how they suffered for years and I used to think about how fortunate I was that my anemia diagnosis led to my celiac diagnosis ten months later. As it turned out, my road to a diagnosis was much more involved than that. The year before I found out about the anemia, I was diagnosed with Shingles. The problem was that I was not in the age group of people who have that condition. Therefore it was misdiagnosed as a muscle spasm and then as hives from the spasm medication. By the time my husband drove me to the third doctor’s visit (in ten days), someone finally figured out I had Shingles. Since the condition requires treatment within three days, mine had already progressed to something called postherpetic neuralgia.

Several years ago David Letterman was out of work for weeks for a case of Shingles. It was later reported that he had PostherpeticNeuralgia. The thing about this condition that many people don’t know is that it is so painful you don’t think you’ll live. The pain is so severe that you just assume you are not long for this world. My case is no different than the average person with the condition. I could not sleep, eat or even think during the episode. The pain overtakes your life every second of every day in ways no one who hasn’t experienced it can imagine. Narcotic drugs do not begin to touch the pain of this type of pain. Luckily for me, a dear friend of mine suggested I see a neurologist when the doctors threw several narcotics at me and said that’s all they could do for me. They might as well been giving me candy. The specialist I was referred to specialized in treating people with postherpeticneuralgia. He gave me a strong anti seizure medication called Neuronton, which you step up on until you get less than pleasant side effects. That is when you know you’ve reached the limit of this medication for your body. Eventually, if you’re lucky, you become pain free and begin the process of stepping down off the medication.

By the end of the first week on the medication, I felt that I would live. Dateline NBC did a story the very night that I finally started coming back to life, about how the maker of the drug lost the biggest class action lawsuit against a drug company. The suit was founded around the illegal practice of off label use of the medication. Some people with a bi-polar disorder that were given the medication committed suicide. My husband told me to stop taking the meds and I told him if I didn’t make it to get in on the lawsuit.

After my Shingles episode was finally over, after about four months, I assumed it was a fluke that I got a condition that only people 50 and over got. It turns out that people under 50 with auto-immune conditions also get Shingles, which I remember reading and not thinking much about during the episode. When I finally had my celiac diagnosis, and learned that is in fact, an auto-immune condition, the pieces all fell into place. There is now a vaccine for Shingles that is for people 60 and older.

If you ever know anyone that is diagnosed with Shingles who is under 50, please let them know the chance they have an auto-immune condition of some kind is extremely high. They might not have celiac and there is no study showing a connection between the two conditions. In hindsight, had I taken what my neurologist said to me more seriously, I might have been diagnosed with celiac earlier. I specifically inquired about the possibility of me having an auto-immune condition. He said that we’d only worry about that if I did not respond to the meds. Since I responded well to them, it was never discussed again.

Even though I really had a short road to my celiac diagnosis, and feel very fortunate about that, for over four months during my plight, I was not a fully functioning human being. In fact, I was like a living zombie. It simply should not be so hard to get tested for and diagnosed with celiac disease in this country. The NIH started a campaign to educate doctors in the U.S. about celiac in 2006. Over three and a half years later, it seems that their big campaign consisted of publishing some information about celiac disease in a gastroenterologist journal. The problem with that is that the front line of defense should be primary care doctors. People with celiac who have depression as a symptom – or migraines – are not going to be sent to consult with a gastroenterologist. Dentists need to be educated about celiac disease as well. The goal of the NIH program was to get an additional 500,000 people in the U.S. diagnosed with celiac disease in five years. If the agency plans to meet that goal, they better step up their game now.

Traveling Gluten-Free as a Teenager

Last Updated on by the Celiac-Disease.com Staff 2 Comments

Traveling gluten-free can be a little intimidating, but it doesn’t have to be.  My son mostly travels with us but has attended a couple of hockey tournaments out of town without us. He had to really keep track of his diet on his own.

When my son was first diagnosed with celiac disease, the first thing I taught him about eating gluten-free was: “When in doubt, go without”. Basically meaning, if you can’t verify the food you want to order or eat is gluten-free, don’t eat it. What do you do then? I make sure that my son always has food packed that is safe for him to eat. Even if it is a Snickers bar, which is not the most nutritious choice, it is gluten-free & can hold him over until he can get something safe.

Some of my go-to travel gluten-free food choices are:

  • Think Thin Bars –higher in protein & a good choice to hold you over
  • Carnation Instant Breakfast – all you need is a glass of milk (avoid the Chocolate Malt Flavor as it is not gluten-free)
  • Gluten-free cereal
  • Glutenfreeda Instant Oatmeal
  • Lara Bars
  • Pure Bars
  • Udi’s bread – doesn’t have to be refrigerated
  • Peanut Butter
  • Jelly (you can get smaller packets here)
  • Fresh fruit
  • Yogurt
  • Gluten-free crackers
  • Cheese
  • Nuts

Most hotels will put a small refrigerator in the hotel room if asked. I like to arrange this ahead of time so that there is one available. This way any food that needs to be kept cold, can be. I try to pack things that don’t need to be kept cold, but that isn’t always possible.

I always try to contact any restaurants that are new to us before traveling. If there aren’t any tried & true chains or recommended places close by, I like to talk to the manager myself to see if it would be possible for my son to dine there safely. His last resort, which he used last year, is to call me and have me talk to the server or manager over the cell phone. Don’t you just love technology? Most often, the people he travels with will ask where he can eat to make things easier. My son’s biggest hurdle has been speaking up. He doesn’t like to cause a scene or be different.

So, with a little effort, traveling and sticking to a gluten-free diet can be done without too much stress. I try to focus more on the purpose of the trip & not the food so much. If all of the food groups are not met & a bunch of junk is consumed – so be it. It is only for a short period of time & he can make up for the junk & resume eating a healthier gluten-free diet when he gets home.

Chipotle Gluten-Free Menu

Last Updated on by the Celiac-Disease.com Staff 3 Comments

I am not usually one to eat fast food and have mainly avoided it for years and tried to focus on eating organic and whole foods, but since I tasted my first Chipotle in the early 2000s I was hooked and it became my weakness.  There is something about Chipotle that differentiates it from your typical fast-food place. It seems fresher by using whole foods, and you have the ability to create what you want every time best of all, it is cheap with pleasant interiors. Interestingly, I never really liked the flour tortillas, and always took my fillings out and tossed the tortilla.

Official Website Menu Information: Chipotle Restaurants Gluten-Free Menu
Location Finder: Find a Chipotle Location Near You

Below we’ve collected what foods are currently safe to eat at Chipotle restaurants for your convenience:

Chipotle Gluten-Free Menu

  • Soft/Crispy Corn Tortilla (Tacos)
  • Cilantro-Lime Rice (White & Brown)
  • Beans (Black & Pinto)
  • Fajita Vegetables
  • Meats (All)
  • Sofritas
  • Salsas (All)
  • Cheese
  • Sour Cream
  • Guacamole
  • Romaine Lettuce
  • Chips
  • Vinaigrette

Chipotle Review:

When I was diagnosed with celiac, I immediately thought all my favorite food places were going to be off-limits. I was extremely pleased to learn that almost everything at Chipotle was still safe to eat, as long as I took a couple of precautions. Of course, everyone must keep in mind there is always a chance of cross-contamination when eating anywhere gluten foods are prepared, it is impossible to be 100% sure. Thankfully, I feel comfortable when eating at Chipotle, and when we are on road trips, it is the one place, I know I can stop and eat.

Chipotle provides an allergen card that is available online and at their restaurants, which clearly lists which ingredients contain gluten, wheat, egg, fish, soy, dairy, peanuts, tree nuts, and shellfish.  Obviously, the flour tortillas (large and small) are out of the question, so you can either order a burrito bowl, salad, or crispy tacos.  Basically, everything else is safe for those of us who are gluten-free.  And for whatever reason, the pork carnitas is missing from the list, but they are also gluten-free.  I typically order the veggie fajita burrito bowl with black beans and a side of chips.  The main thing to be careful of is cross-contamination from the tortillas.

When I first step up to order my dish, I will tell them I have a wheat allergy.  I have learned that if I say gluten-free, many times they look at me like I have a third arm, but if I say I have a wheat allergy, they are taking off their gloves to change them before I even finish my sentence.  And if someone else is going to be handling your dish, be sure they also change their gloves.  However, once I say I have a wheat allergy, that first person will usually alert the others to change as well.

Every Chipotle is different, and it seems some are much more knowledgeable about celiac and other food intolerances than others.  I have been somewhere they have automatically changed all the serving spoons and used condiments from new containers for me.  Otherwise, I will usually ask if they can take the cheese from one of the unopened containers from under the counter for me since they grab the cheese with their hands, it seems everything else, other than the lettuce, is handled with utensils. And finally, I always order my own, so I can watch exactly how my dish is prepared.

I have had very good experiences with every Chipotle I have been to, and they all seem more than happy to accommodate me when I nicely explain, in the beginning, my food limitations. It is nice to know there is another place where we can comfortably eat.

As always, when dining out gluten-free, do your due diligence and make sure the staff understands your needs. There are very few restaurants that are 100% gluten-free, so cross-contamination is always a risk. If you don’t feel comfortable with what you are hearing from the staff, perhaps it is best to dine elsewhere.

For information about other gluten-free restaurants menus, check out our gluten-free restaurants page.