...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

that girl

I said I'd try and post more during Celiac Awareness Month....and this is one topic that is near and dear to my heart.


The thing I hate the most about having Celiac Disease actually has nothing to do with the food itself. It's the stigma that comes with it.

When someone offers me something, I have to choose what to say. I can politely take it, throw it away, and immediately disinfect my hands. I could tell them, "no thank you," which usually results in a nasty look by the offerer, who thinks I have disrespected them. OR I can tell them I have Celiac Disease and can't eat it. Depending on how well I know the offerer, how likely they are to be offended, and how likely they are to start an argument, I choose my answer.

Most of my friends and acquaintances have been very understanding about this whole gluten thing. They don't really understand it but they do understand it's not easy. Some, though, have actually made the whole process harder to handle in one way or another.

See, the media's representation of Celiac Disease and going gluten free have stigmatized those who struggle with this auto-immune disorder. Every week, there is a new celebrity going gluten free to lose weight, or sharing their success story of how much healthier they feel now that they cut gluten. The problem is, most of these people don't have Celiac Disease and don't realize the effect gluten has on those who actually do.

Those celebrities, and even celebrity doctors who frequent daytime talk shows, tell the world that a little bit of gluten doesn't hurt. They don't have to check EVERY. SINGLE. LABEL. They don't have to write to companies to find out if there is hidden gluten in their products. They don't have to worry about "gluten free" foods being cross contaminated with glutenous products made by the same companies. They don't have to worry about missing out on work and every day activities because they are sitting on the floor next to the toilet for the next few days/weeks/even months.

Those of us with Celiac Disease do. Shopping with a Celiac takes HOURS. Those first few months, we'd be at the grocery store for hours checking labels, checking websites, checking blogs and other sources to see what foods were safe. Right now, companies are not mandated to list allergens in their ingredient list. Some do, which is always a huge relief, but many are unreliable.

There are people who truly believe that Celiac Disease is a fad. They say insensitive things because they don't know any better, and were educated by celebrities and media who failed to fact check. I try not to be offended  because I'd like to think people just don't know any better. That's why I keep blogging about it...if I can make just ONE person more aware then my job is done. Isn't that what awareness is all about?

So I'd like to leave you with a video. A video that sums up the stigma of living with Celiac Disease. I hope you will watch it, and not buy into the hype that Celiac is a fad. We are not picky. We are not anti-social. We are just trying to be as normal as we can.

even Disney?

This.

(Read the story here)

This right here.

This is why Celiac Awareness Month is important!

A company as family friendly as Disney produced a kid's show that blatantly has children being bullied for not eating gluten.

Breakdown: Kids eating breakfast. One kid says he can't eat gluten because of an allergy. Other kids laugh at him and make fun of it. Later in the episode, kids throw the gluten-filled pancakes in allergy kid's face. Even if kid doesn't have the topical version of Celiac (DH), he is being picked on because of his auto-immune disorder.

How could Disney think this is okay?

As an adult, I have known what it's like to be shunned and ignored and even teased a bit about the fact that I have to eat gluten free. (Note the word have. It's not a choice I would have wanted to make.) It's frustrating, humiliating, and annoying to be left out and marginalized for something I have no control over. Can you imagine how a child might feel in these same circumstances?

Having to eat at a separate "allergy" table at school? Not being able to share in birthday celebrations? Not understanding why you are so different than everyone else?

Disney could have used this as a teaching tool, but instead turned it into a big joke. Shame on you, Disney. Shame on you.

--------------------------------------------------------------------------------

UPDATE! 

--------------------------------------------------------------------------------

The Celiac family (and all of their supportive loved ones) joined together in protesting the episode. They contacted Disney, wrote on facebook, blogged, and signed petitions.

Disney has now publicly apologized and has decided not to air the episode. They may go back and edit the scenes out and then re-air it. Here is their statement:

Victory for awareness! Now, to continue getting the information out there... I always tell myself not to read the comments on news articles and things such as this, but I couldn't stop myself and what I saw was disheartening. So many people angry over the "picky parents" and "glu-tards" (yeah, someone actually said that...) being easily offended. It just goes to show how much the media has stigmatized Celiac Disease. Had this incident been a child with a severe peanut allergy or lupus, the fuss over complaints would not have ensued.

Among the rants were some very well-worded comments about how Celiac Disease is actually linked to cancer, horrible GI symptoms, seizures, asthma, Crohn's Disease, etc (but you already know that so I won't go there.) The best we can do it use the truth and try and get the word out there...

surprising sorghum

In celebration of Celiac Awareness Month, I figured I'd post some tasty, naturally-gluten-free snacks! One of my favorite snack items used to be popcorn. Many Celiacs (myself included) find that they are more prone than others to having multiple food allergies. A few months ago, I found out that in addition to being unable to tolerate gluten, I was allergic to corn.

Of course, this meant no more popcorn.

A few weeks ago, though, I heard about popping sorghum.

Sorghum is a grain that many Celiacs rely heavily on as a substitute for wheat. Sorghum flour, mixed with other gluten free flours, is great for cooking. Sorghum seeds are packed with protein and flavor. The best part is that cultivated popping sorghum can be popped like popcorn!

I decided to try it out, so I ordered a bag from Just Poppin' and I highly recommend them. What a great company with wonderful customer service!

Within a week (which is almost unheard of, being that we are an APO address) we received our bag and tried it out.

Like popcorn, it pops best in a small covered pot with olive oil. After some experimenting, I have discovered that cooking it in smaller batches yields a higher ratio of popped sorghum. (I use 2 tsp. of olive oil + 1/4 to 1/3 cup of seeds -- and if I am cooking more, I do more small batches.)

Unlike popcorn, popped sorghum has a bit of a rich, nutty taste. It also pops much smaller than popcorn. Finally, the hull of the sorghum is edible (and not nearly as hard as popcorn kernels) so any sorghum that does not pop can still be eaten!

I highly recommend this tasty little snack in lieu of popcorn if you want to change things up a bit, or if you have a corn allergy!

I added some Enjoy Life chocolate chips for a gluten, dairy, and corn free sweet-and-salty snack!

awareness

While I don't want my life (or my blog) to center solely around my gluten-issues, it's been the one thing first-and-foremost that always seems to be on my mind. I can't escape it. Some days, I've learned to be okay with that. Others, I want to have a real "reminds-you-of-the-olden-days-when-you-were-a-child-yelling-and-screaming-kicking-your-feet-tantrum."

But the biggest reason I keep writing about my celiac story is for awareness. In this day and age, when an estimated 1 in 133 Americans suffer from some sort of gluten intolerance, people know strangely little about this disease.

Every time I meet someone new (or have some sort of eating experience with someone for the first time) I have to explain it.

Not that I mind.

But it's distressing to me that so many people are mis-informed because of today's poor media fact-checking. I have seen several articles and tv specials, where the "specialists" talk about going gluten free as a way to lose weight. I've heard them say that Celiacs can have just a little gluten and not get sick. Even Rachael Ray, in creating "gluten free" meals, added gluten-containing ingredients to the mixture on her cooking show. Every day you hear about a new celebrity who has gone gluten free, and each time it happens, those who actually suffer with this disease have their credibility drop just a little bit.

Over and over.

I have heard horror stories from those who have gone to eat at supposed gluten-friendly restaurants, only to have someone not take them seriously (or even purposely, because of disbelief) touch something with gluten, add gluten-filled ingredients, or fail to disinfect hands/counters/utensils.

We are a bit further removed from this, since we live in a country that is so geared toward customer service. It has its pros and cons. On the one hand, I have to explain (in Japanese) what Celiac is and what I can and can't eat. The Japanese are largely unaware of Celiac, which seems to be a primarily European auto-immune disease. Every time, they have to ask the chef and deliberate each item on the menu that may or may not be gluten free. On the other hand, though, I know that if they tell me they have something on their menu I can eat, it will be prepared in a way that is safe.

I am worried about our trip to the US this summer, where I won't have my safe cocoon of a kitchen. I worry for my friends, who are left out of social situations (or are forced to sit and not eat if they do choose to go) because of the disease. I worry for those who are mis-diagnosed for years before figuring out they have Celiac Disease. I worry for the children (and even adults) in our society who are bullied because of something they can't control.

So instead of sitting here and worrying, I write. I write in the hopes that one of you will read it and learn something. Maybe you're having some of the same experiences I have had and can't figure out what's causing them. Maybe you have a friend who has been diagnosed with Celiac Disease and you don't know what it's all about. Or, maybe you're one of the many who have gone gluten free as a fad because of all the celebrities doing it, and don't realize the negative effect it has on those who are actually cursed with having to be gluten free for the rest of our lives.

I write, because I want the world (or at least, my little corner of it) to know that Celiac is a real thing and it isn't going away any time soon.

On that note, I'd like to say, "Welcome to Celiac Awareness Month!" I hope to be writing about some of the things I've discovered because of Celiac Disease (recipes/products/positives/negatives) throughout the month. To start off the month, I've created a facebook timeline template for anyone who would like it! Click the picture to get the higher-resolution version, and feel free to use and/or share it with anyone you know who wants to spread awareness! (I know it looks off-center, but once you put it on your timeline, your profile picture will balance it out!) Enjoy! ♥