it's happened again

It's happened again. Someone else I know is "going gluten free."

This isn't my picture, though that would be awesome if it were.

Now let me preface this with a statement: if you have symptoms that are similar to the ones I have previously described and you feel that cutting out gluten might alleviate them, please ask me about it. I'm happy to share my experiences and/or offer you some bits of knowledge I had to learn the hard way throughout this process. If you want to cut down on (or cut out) grains because they simply aren't the healthiest of food options, that's cool with me! I'm happy to support you and I'll probably even ask you if you want to swap recipes. If, however, you are going gluten free to lose weight (which won't work because processed gluten free products tend to be even less nutritional than their gluten-filled counterparts) or because you heard about that gluten free diet on some talk show and want to try it and tell me all about it, thinking that we now have some magical connection, I'm going to struggle with whether or not I should tell you how I really feel about your decision. On the one hand, it's not always considered polite to speak your mind when it's critical and judgmental of another's actions. On the other hand, though, I'm tired of smiling and nodding, knowing that your actions affect me in a negative way and that you probably have no idea.

What I really want to tell you is that you are part of the problem. I realize that this may sound harsh, but somebody needs to tell you this. 

You may not believe this, but your actions are contributing to the stigma associated with gluten and also to the belief that gluten free is not a real necessity, but only the latest fad diet. You are the reason that gluten free is American society's new laughingstock and the reason talk show hosts and comedians spend hours writing material to make fun of our gluten free community. You are the reason people groan and/or roll their eyes when I tell someone I can't eat gluten. You're a huge part of the reason many restaurant chefs and servers don't take people seriously when they ask for a gluten free meal, and you're the main reason companies feel the need to plaster "gluten free" all over their products (when often, the products aren't actually gluten free enough to be safe for people with Celiac disease). Your actions have consequences - consequences that you will probably never see or feel, but we do, all the time.

What I really want to tell you is that you have no idea what gluten free really entails and that you will probably never have go through what Celiacs have to deal with every single day to ensure their health and safety.

I want to point out that you will never have to worry about people not believing you when you say you need to have a meal that's gluten free. To have people who think your condition is just a fad (and let's face it, you don't even have a condition). To have the people you trust with your food add gluten-containing ingredients to your meal just to see if you actually notice and/or react to it. It's a horrible ordeal to go through and I wouldn't wish it on anyone. You would never see someone pulling this kind of prank on someone with a peanut allergy or diabetes, but it happens to Celiacs way too frequently.

I want to remind you that you will never have to worry that a gluten-y crumb hidden in your food will make you sick for the next month. I've had this experience and it isn't pretty. Trying to go on with your life, going to work, and pretending to be okay with your family and friends and co-workers (and students) while all you want to do is hide under your sheets because you feel so sick and haven't slept in weeks...well, put plainly, it's no easy task.

I could fill you in on the research process needed for just about every single item you buy. Just about every restaurant I've eaten at since my diagnosis in addition to every food purchase, every makeup purchase, soap purchase, and even laundry/dish detergent/lotion/sunscreen/chapstick purchase has involved research in the form of internet searches, gluten free apps, phone calls, reviews from others, and/or emails to the companies themselves. If I had a dollar for every email I've sent to inquire about a product's safety and production practices, I would actually have enough money to easily buy the gluten free food that is so expensively priced!

I could let you know how exhausting and sometimes uncomfortable social situations have become for many of us. American celebrations tend to revolve around food, and Celiacs tend to be left out. It's not that we expect others to go out of their way for us. It does, though, take a lot of planning to bring something along that will be safe for us to eat, especially when the party or celebration is at someone else's home. It takes organization and time to call a venue ahead of time to figure out whether or not we are even allowed to bring our own food, and then how best to do it. It takes energy explaining to people why we aren't eating, or why we had to bring our own food. It takes patience to describe over and over again what we can eat, what we can't eat, and why even that gluten free dip on the table isn't safe for us because other people have contaminated it. But most of all, it's lonely to be left out. It sounds juvenile, I know, but you try being left out of almost every celebration your friends or co-workers have for the next year and tell me you don't feel a bit ignored and singled out. It's happened to the best of us and we've had to learn how to adapt and try not to take it personally.

I could call attention to the fact that you will probably never have to argue with someone who openly judges your food choices while you try to explain that this is the only way you can live safely. Arguments like these happen all the time, on blogs and on Facebook, at grocery stores and with doctors. That doesn't even include the eye rollers and smirkers who might be part of your family or group of friends or work staff. And can you really blame them? People are SO tired of hearing the words "gluten free." I'm tired of it and I actually have Celiac, which means I will have to deal with those words for the rest of my life. I can't imagine how those who have never had to deal with it on a personal level feel when they hear about it...again.

I could point out the fear. You see, you will most likely never know the anxiety that most of us have. Yes, there are neurological symptoms like OCD and panic attacks that often go hand-in-hand with Celiac. But what I'm referring to here is the worry that it took so long to get diagnosed (the average is six to ten years) and the knowledge that this time has caused a lot of permanent damage that may or may not have already manifested itself. The understanding that you are likely to develop other auto-immune disorders and/or food allergies at some point in your future. The reality that you may have to deal with your children also having Celiac, or even the possibility that you may no longer even be able to have children.

You see, these are things that you gluten-free-fad-dieters don't think about.

For you, it's just a diet. For us, it's life. 

And so I ask you to stop. Stop being a lemming. Stop following the trends without thinking about the consequences. Stop making a big deal about your gluten free diet and then posting pictures of the pizza you ate because "it's just so hard to be gluten free all the time." You are hurting our community. You are causing damage to the people who have no choice but to live gluten free. Please, just stop.

what does "grown up" really mean?

I always wondered what it would feel like to be a grown up...what it would be like to be out there, self-sufficient and adventurous.

There are many questions to ponder the idea of adulthood when you think about it. What defines a grown up? Is it graduating from high school/college? Turning 18 or 21? Getting married? Voting? Having a career? Having the ability to travel? Buying a house? Having kids? Having grand-kids?

I think this is one of the conundrums 20 and 30-somethings often feel. We leave school and our teen years, and we start the search to find ourselves. We search for meaning. We search for purpose. We search for careers and lifestyle changes and a chance to figure out what we believe. While searching for and chasing these things, time passes much more quickly than we realize. We wake up and realize that years have passed and we're getting old.

Birthdays, for me at least, seem to bring a moment of reflection. I look at myself and my peers and wonder how we got to where we are. When did we finally become grown up?

Since becoming an adult (and by adult, I mean the agreed-upon American age of adulthood), I feel like I've done a lot. I worked and studied hard and graduated from college. I had roommates. I got married. I started a career I was passionate about. I lived in several cities, states, and even countries. I had a pet. I taught and mentored hundreds of young people and even some adults. I studied (though I haven't quite mastered) other languages. I traveled and met new people and owned my own business. I took pictures and I wrote blogs.

Despite all that, I still don't quite feel like a grown up. I don't feel like I have it all together. In fact, I look at my parents and in-laws and other well-grounded adults in my life and realize that sometimes I feel like a complete mess.

Talking to other peers, it seems that many of them don't feel grown up either. Mind you, these are adults. Adults who are responsible and well-educated, married, and/or have children and families of their own. But they still don't feel grown up.

I wonder if we ever will. Will we look down on our grand-kids someday and finally feel like we've reached that sense of adulthood? When we retire from the careers we worked hard at for 30+ years? When we celebrate 25 or 50 years of marriage? When we notice the wrinkles on our hands and faces? When we look back at our memories? Will it just hit us one day, like a truck, out of the blue?

Or...maybe it's okay to not feel like a grown up yet and to realize that there's plenty left awaiting us. That we're still changing and we may never find ourselves for the singular reason that we are always changing and evolving and adapting.

Another year has passed and I still don't have the answers to these questions. I wonder if I ever will. Maybe that will be the moment I finally feel I've finally grown up.

...and the crazies come out!

Celiac Awareness Month has brought out a lot of positive and negative media points this year! One of these came up this weekend, concerning Bart's Bakery. The company has claimed for a while now that their cookies are gluten free. After emailing the them, though, we have learned that the cookies are actually not Celiac safe. The equipment used for their gf cookies is the very same equipment used for their regular poisonous-to-Celiacs cookie batches. It's one thing to have a factory that has a dedicated line for gluten-free foods (and most of these companies will display this information right on their box and/or website). It's another to use the exact same equipment and then brag about having the "best gluten-free chocolate chip cookies in the world."

Having seen their packaging and having emailed the company, Bart's would be a brand that I'd avoid. No cookie is worth the symptoms that come with Celiac, and I also disagree with their packaging and marketing. It seems to me that their cookie packages aim to reel in customers with gluten issues, regardless of whether or not the products are actually safe for them. I probably wouldn't have felt led to post a blog about it though.

And then this happened.

Bart has gone out of his way to defame a Celiac-community advocate who was merely trying to keep his fellow Celiacs safe. Bart has resorted to cyber-bullying, he has created a fake website, he has spread rumors and lies all over his facebook page, and he has treated those who question his company ideals and policies with extreme derision and disrespect.

Even with all of the drama and scrutiny, Bart stands by his "gluten free" statement, despite his own marketing team flat out stating that the cookies are not Celiac friendly.

He has shown that he has no respect for his customer base's health or dignity.

This, unfortunately, seems like a case where money talks. It's one thing to write a facebook message, only to be ignored or insulted by this company's owner, and another to alert the shops who carry his product. If you are someone who has been affected by (or knows someone who has been affected by) this company's blatant lack of common sense and decency, I would urge you to leave a comment on their Amazon products and/or write to the shops who carry their product (namely Whole Foods). Perhaps this is the perfect opportunity for Celiacs and their advocate peers to stand up to those companies who think they can dupe us for some cash.

what gluten is and why it matters

May is, among other things, Celiac Awareness Month. It's hard not to notice all the articles, videos, and posts about gluten this month.

The spectrum of media concerning gluten this month has surprised me a bit. I've seen the gamut, ranging from the helpful to the absurd. There are bloggers who have devoted much of their month (and their lives) to helping those with Celiac/gluten intolerance. There are gluten free goodies being given away to celebrate that our lives can go on after being diagnosed with Celiac. There are videos that poke a bit of fun at the gluten free lifestyle. (I found the video to be quite amusing, though I had to force myself not to read any comments regarding said video.)

Then there are the articles who bash people for going gluten free, with headlines like, "Being gluten free is dumb," or, "Surprise! 'Gluten Intolerance" is Likely Bullsh*t!" Yes, there is a one-sentence disclaimer that Celiacs should not eat gluten. And then these articles go on to say that those who have experienced a return-to-health because they cut out gluten are crazy and shouldn't be gluten free. It amazes me how judgmental and spiteful people can be these days.

All this hype and all this anger over a set of proteins in everyday food.

While I agree there is a danger to this "gluten-free-fad" that seems to be ever popular these days, it's not for the same reason these article writers seem to have. They claim that the newest study has proven that people don't need to be gluten free. This, however, is not necessarily the case. Yes, the new study (note the word "study" -- not "studies") has found that the specific supposedly gluten intolerant people involved may not have had to be on a gluten free diet.

The study was a basic one, though, and did not take many factors into account. Gluten intolerance and IBS are often mistaken and misdiagnosed for each other. In addition, I would be interested to know what kind of diet these participants were on before starting this particular study. Were any of them previously on a low FODMAP diet? Were any of them Paleo? Did any of them have other food allergies or intolerances? Had they done allergy tests to see if other food intolerances were at play? Did these people continue to eat gluten free, grain-filled substitutes for the foods they had eaten before going gluten free? I'm definitely not saying I don't agree with the study, but I think it's apparent that more tests need to be done on a more diverse population of people who have been diagnosed with gluten intolerance before we can go around saying that gluten intolerance isn't real.

The reason I feel that the gluten free fad is dangerous lies more in the outlook of the general public. With so many people preaching gluten free, even though most of them don't really have to adhere to the gluten free lifestyle, it makes us look bad. Someone going to a restaurant and ordering a gluten free meal, who later eats a gluten-filled cupcake and plays it off like it's no big deal, gives the impression that most of us stick to a gluten free diet only when it's convenient to do so. When a celebrity endorses the gluten free lifestyle because it helped them to lose weight, we lose credibility. When a cooking show host calls Celiacs "picky eaters" and then touts a gluten free recipe that actually uses gluten-containing ingredients, we look like we're snobbish instead of people who are truly trying to protect ourselves.

What people don't see, though, is the real symptoms of gluten on someone who can't digest it. There is always the gluten-accompanying nausea, bloating, and stomach pain -- those are the easy symptoms. The real pain comes from the brain fog, the anxiety attacks, the balance between constant constipation and then crippling diarrhea, joint and muscle pain, the week or month-long insomnia, the memory loss,  and the countless other effects of gluten on the digestive, respiratory, and even nervous systems.

When we speak about being gluten free, we are often mocked. We are often not taken seriously. We are served gluten in restaurants, which brings weeks of the above symptoms and the feeling that we can never be safe eating out or traveling.

That's why I'm all for this gluten free fad to fade, to disappear. The sooner, the better. Yes, the fad dying out might cause companies to stop marketing to the gluten free fad dieters, so Celiacs may not have as many restaurant and/or grocery store choices. The flip-side to that, though, is that maybe those of us still fighting the good fight will be taken seriously. I look forward to being able to say I have Celiac without having to brace myself for the imminent eye rolling or the looks of disbelief.

To those of you who are gluten free because you think it's trendy, please stop. You're not doing yourself any favors and you certainly aren't helping those of us who don't have a choice in the matter. To those of you who don't know anything about gluten, please do your research before offering advice or your ignorant (and malicious) comments. Or better yet, ask us about it. In my experience, most Celiacs are happy to talk about the information they have learned through their diagnoses. We have had to become food experts to survive, so we have a lot of knowledge to share. To those of you who have symptoms, please do research and testing before self-diagnosing yourself as gluten intolerant. And finally, to those of you who are gluten free because you have to be, keep going strong! You are not alone!

do YOU suffer from Celiac Disease? (check your symptoms here!)

I know I've written a few times about living with Celiac Disease, but I haven't really used this blog to explore the symptoms and events leading up to my diagnosis. When I first heard that the average Celiac patient takes anywhere from six to ten years to get a correct diagnosis, I couldn't believe it. Knowing what I do now, though, I can trace several of my symptoms back to my teen years.

So why does it take so long?

Well, honestly, there isn't one simple answer to this question. One factor is that Celiac is a relatively new disease as far as impacting a large percentage of people, and researchers are still studying it and its effects. Another factor is that Celiac often resembles (or goes hand in hand with) other diseases, like IBS and Crohn's. The biggest factor is that the symptoms that go along with Celiac Disease differ from person to person and are not solely digestive in nature.

This is the fact that most people are surprised about. Who would have thought that Celiac, a mere food allergy, could cause systemic damage to the human body? Well, the truth is, Celiac is not just a food allergy or intolerance. It's an auto-immune disease that actually causes the body to attack itself when gluten is ingested. As with other auto-immune diseases, the symptoms can impact every body system. Here are several symptoms caused by Celiac Disease, broken down by system. Keep in mind that some symptoms affect more than one system.

Some of these symptoms are more common than others, and this list is not all-encompassing by any means. I have put an asterisk next to the symptoms I suffered with prior to my diagnosis, just to give you a reference as to how many could be at play simultaneously. Most of these symptoms come back when I accidentally ingest gluten in some form, and last anywhere from one to six weeks. (Symptoms were gathered from the National Foundation for Celiac Awareness, Celiac Disease Headquarters, Celiac Support Association, Recognizing Celiac Disease, Coeliac UK, and other sources. I have also included a few info-graphics at the bottom for quick reference.)

**Keep in mind that this is not a medical blog and I have no medical background. If you find that you have several of these symptoms, I would suggest doing some more research and contacting your doctor for testing.**


Circulatory/Cardiovascular System (circulates blood and nutrients throughout the body)
Anemia*
Angina
Arterial plaque
Asthma*
Blood pressure changes
Blood vessel inflammation
Fainting
Heart palpitations*
Nosebleeds


Digestive System (digests and processes food)
Abdominal Pain*
Acid Reflux*
Bad breath
Bloating
Constipation*
Diarrhea*
Dysphagia (difficulty swallowing)*
Food intolerance*
Gallstones*
Gas*
Gastric ulcers
GERD*
Heartburn*
Hemorrhoids*
Lactose intolerance*
Leaky gut
Low blood sugar
Malabsorption leading to weight gain or weight loss*
Mouth sores
Mouth ulcers
Nausea*
Swollen gums*
Tongue Sores
Tooth and gum pain*
Tooth enamel erosion*
Vitamin deficiency*
Vomiting*


Endocrine System (regulates glands and hormone production)
Blood sugar changes
Dry mouth*
Hormone imbalances*
Hypothyroidism
Hyperthyroidism
Weight fluctuations (seemingly unrelated to food)*


Immune System/Lymphatic Systems (transport and defense system against disease)
Anemia*
Asthma*
Auto-immune disorders
Fatty Liver Syndrome (non-alcoholic)*
Food Allergies*
Hypothyroidism
Hyperthyroidism
IgA Deficiency
Lymphoma
Rheumatoid Arthritis
Rhinitis
Weakened/Sensitive immune system*


Integumentary System (consists of skin, hair, and nails)
Acne*
Brittle nails*
Bruising*
Dandruff
Dermatitis Herpetiformus  (DH)*
Dry skin*
Edema
Exzema
Flaky skin/lips*
Hair loss
Hangnails*
Hives*
Ingrown toenails*
Nail fungus
Peeling lips*
Peeling nails
Rashes*
Skin cancer
Swelling*


Muscular System (works with several other systems to permit movement, maintain posture, and circulate blood)
Ataxia
Leg (and other muscular) cramps*
Muscle pain*
Muscle spasms*
Swelling*
Tongue Sores
Weakness*


Nervous System (transmits signals throughout your body)
ADD
ADHD
Anxiety*
Apathy*
Ataxia
Autism
Blood pressure changes
Brain fog*
Chills*
Constant need to fidget*
Depression*
Dizziness*
Dry or watery eyes*
Fatigue*
Hot/cold flashes*
Insomnia*
Irrational anger/irritability*
Learning disorders
Listlessness*
Memory loss*
Migraine*
Narcolepsy
Nerve pain*
Night Sweats*
Nocturia (waking several times at night to use the restroom)*
OCD*
Panic attacks*
Restlessness*
Seizures
Sleep disorders*
Suicidal thoughts
Tinnitus/ringing in the ears*
Vertigo
Weakness*


Reproductive System - Female (involved in the production of hormones and gametes for reproduction)
Amenorrhea (sporadic or infrequent menstrual periods)*
Anemia during pregnancy
Childbirth complications
Delayed puberty*
Dysmenorrhea (painful menstrual periods)*
Dyspareunia (painful intercourse)
Early menopause
Fertility issues*
Infertility
Long-lasting Premenstrual Syndrome symptoms*
Miscarriages
Ovarian Cysts*
Painful periods*
Swollen cervix*


Respiratory System (involves the intake of breath and converting oxygen to carbon dioxide)
Asthma*
Bronchial Pneumonia*
Bronchitus*
Sinus pressure*


Skeletal System (provides structural support and protection)
Arthritis*
Bone fractures
Brittle bones
Joint pain*
Joint stiffness*
Joint swelling*
Osteoporosis
Tooth and gum pain*
Tooth enamel erosion*


Urinary System (balances fluids in the body and the process of excretion of such fluids)
Bladder infections*
IgA Nephropathy
Kidney Stones
Urinary tract infections

Info-graphic courtesy of Schar Gluten Free

Info-graphic courtesy of Gluten Dude

influenster

So I recently got an invitation to a website called Influenster...I'm brand new to it and am trying it out. Apparently you can share information on different products and perhaps win free goodies in the process! I'll let ya'll know how it goes!

sakura and sunshine

This is my favorite week of the year: Golden Week. It's that time of year when Northern Japan's sleepy winter haze finally lifts and nature seems to wake up to a new season. The snow is finally gone and the delicate pink blossoms of the sakura trees start to bloom.

This week means walks in the park, bike rides, hanami (picnics under the cherry blossoms), and day trips!

We have spent more time outside in the last week than we have in the past several months!

Seamus had his first trip to the beach and we loved watching him explore and run away from the crashing waves.

Our favorite little park was something to behold in its pink splendor, and it was a joy to hear all the laughter of children as the weather finally warmed up enough to play all day outside.

Soon, the sakura will start to fill the air with blossoms as they fall, and other flowers will bloom in their place.Tulips and lupine and hydrangea will bloom as far as the eye can see, as my favorite time of year takes hold in Japan. I love spring!

summer dreamin': a grain-free quesadilla with avocado dipping sauce recipe

I'm sure I get like this just about every year at this time.

The best way to describe it is stir-crazy.

The weather keeps taunting us. For two or three days, it will be bright and sunny and warm enough to melt most of the snow. We get to the point where we can almost see the ground through the sheets of snow and ice. People will start putting their winter clothes and boots away.

I like to pretend that I'm boycotting winter, but I also realize that it's pointless. As soon as they all happily finish packing away the winter gear, Japan's clouds will roll in and dump three more feet on us. This is merely a short-lived respite from the six-month winters of Northern Japan.

That was this weekend. Granted, this time it was only inches and not feet. It was enough, though, to send everyone scrambling to their closets for their newly-packed-away winter gear and to keep the less intrepid from venturing outdoors.

For me...well, it just made me antsy. It's difficult for this beach-loving, snow-hating girl to endure the seemingly never-ending winters. This was the kind of storm that got me reminiscing about driving with the windows down, looking at pictures of warmer times, and longing for summer recipes.

So today for lunch, I am boycotting winter and making a summery meal: black bean quesadillas with a cool avocado dipping sauce.

These recipes will make three quesadillas with the perfect amount of dipping sauce to go with them.

Quesadilla Ingredients:

• 2 tablespoons olive oil
• 1 tablespoon onion, finely minced
• 1 clove garlic
• 3/4 cup zucchini, chopped (I use my hand chopper for a perfect consistency)
• 3/4 cup canned black beans, rinsed and drained (We use Eden Organics - they come in a BPA free can and don't have all the chemicals most canned beans come with. If you use another  brand, you probably won't need to add the salt that I used.)
• 2 cups Monterey Jack or cheddar cheese, shredded
• 1 teaspoon cilantro
• 1/4 teaspoon salt (see note on the black beans)
• juice of 1/2 lemon
• 6 tortillas (we sometimes use Chebe bread mix and modify it for chalupa-like tortillas, or use this paleo recipe)
• 1 mini can diced black olives, drained and rinsed (optional)
• Avocado dipping sauce on the side (see below for instructions)

Instructions:

Heat olive oil in a saucepan or a skillet over medium heat. Add the onion and garlic, stirring to keep from scorching. After 2-3 minutes, add the other spices, lemon juice, zucchini, and beans. Saute until soft, stirring constantly (between 5-7 minutes). Remove pan from heat and set aside.

Make your tortillas (or get out your prepackaged tortillas). Add one tortilla to the pan. Spread 1/3 of the filling and add a small handful of cheese. Place the other tortilla on top and flip as necessary until cooked to your desire.

*******************************************************************************

Don't forget the dipping sauce! This is a light, flavorful guacamole that's perfect with these quesadillas.

Ingredients:

• 1 avocado, ripened
• juice of 1/2 lemon
• 1/8 cup unflavored Greek yogurt
• 1/4 teaspoon salt
• 1/8 teaspoon black pepper
• 1/2 small tomato, finely chopped (or 1 tablespoon strained tomato)

Instructions:

Cut open the avocado and scoop the insides into a bowl. Add the remaining ingredients and mash/whip to your desired consistency with a fork. Place in the fridge for about 20 minutes before serving (or serve room temperature if you don't like your sauces cold.)