Daily Digest

Category: GF Support

  • Struggling with Celiac? 41 Ways to Live a Better Life.

    Struggling with Celiac? 41 Ways to Live a Better Life.

    Just diagnosed with celiac and struggling with how to cope on your new journey? Eating gluten-free but still feeling like crap? Worried about what the future will bring? We’ve all been there. That’s the main reason I started this blog in 2011. Because I wasn’t feeling better. I wasn’t happy with my celiac life. I had to make a change.

    Thankfully I did and never looked back. But it’s not just me. Many of us in the celiac community have come to terms with how to cope best with our disease.

    I asked the celiac community the following question: What advice would you give to the newly diagnosed or those who are struggling? Not necessarily what foods to avoid because anybody can look that up. But what have YOU learned from living with celiac disease that you wish you knew when you were first diagnosed?

    Here is some of the spot-on advice they offered:

    • From day one, your illness will be trivialized. From the doctors who diagnose you, who can make it seem that going gluten free is the easiest thing in the world, to anyone you speak to who tell you “there are so many gluten free things on menus now, there’s never been a better time to do it” (like it was a choice), to the waiters that roll their eyes at you. Rise above it.
    • It is surprising and alarming how many food professionals have absolutely no idea what they are putting in to their food.
    • Some symptoms will lift immediately. For me, the migraines (which I didn’t realize were related until after they stopped), the extreme bloating and pain ceased very quickly. Others will take awhile. Be gentle. Know that your body will take a while to recover and that is OK.
    • A lot of people go “Gluten Free” for weight and diet reasons. You very well could gain weight. I personally have been severely underweight for a long time. I gained 7.5 kilograms (16.5 pounds) when I stopped eating gluten. Roughly 15% of my body weight. Even though I was now eating a lot less, my body had not been absorbing what I had been eating. Weight gain was a very unexpected side effect!
    • There will be a break down of some or many of your relationships. This illness can be debilitating and socially ostracizing. Either you will tire of the people who tell you how they eat gluten free for “health reasons” and its SOOOO easy, or they will tire of you, because you are now a “burden” at social engagements.
    • You will spend a lot of time apologizing for your illness. Over time you will stop doing this, but particularly in the beginning you will feel like a burden. Sometimes its easier not to eat than it is to “cause a fuss”. If any one makes you feel like this – it’s easier to remove them from your life than it was to remove gluten so feel free to do that.
    • Research has indicated that there are significantly higher levels of depression and anxiety among those with Celiac Disease, in particular young adults. Celiac disease is 24 hours a day, with no end in sight. Most days it is OK, and you get used to it, but you cannot switch it off, you are constantly in a state of high alert, because anything that you put in your mouth can make you sick. More knowledge and awareness and comfort will lesson this, but it will never go away. Do not let it consume you.
    • Check the ingredients of EVERYTHING. Gluten is a filler and hides in the most unexpected places. Some recent places that I have found it – Oral Contraceptive pill, Cold and Flu Tablets, and other medicines. Again – ignorance from medical professionals mean that you can and will still be prescribed tablets that contain gluten. Always always always double check.
    • You WILL start to feel better. Your eyes will become clearer, the fog that you felt in your mind will lift, the migraines will end, the pain will end, any nutritional deficiencies you had will even out.
    • There is something empowering about knowing that you don’t have to take medication, and you can (to a large extent) control this illness.
    • While you will lose some relationships, you will gain others. You will gain a new appreciation for people who have a basic respect and thoughtfulness for you, and the little things will become big things.
    • There will be some long days, and hard weeks that turn into months, but you will discover a strength you didn’t realize you had, and instead of feeling isolated, and isolating yourself, you will search deep into your own soul and the values of those around you, and surround yourself with people who make you feel exactly how you should – that celiac can suck, but it is not your fault, you are not a burden and you are not alone.
    • Knowledge is POWER especially with this disease. I was diagnosed 6 years ago and I can say with 100% certainty that it does in fact get easier and better every single day.
    • Attitude is everything in this journey and there’s no other way to say it. Keep your chin up, don’t apologize for having a disease that is out of your control and find new foods you enjoy that are also healthy for you.
    • Stay away from the processed foods as much as possible. Fresh fruits and vegetables, meats, cheeses, wine, etc. are all gluten free and fantastic! Keep it simple and learn to enjoy whole foods.
    • You will link so many different problems to Celiac that arise. Issues that you thought were separate and just how your body works… good chance they’re part of the effects of the disease. I thought Celiac was mostly my dermatitis herpetiformus… turns out it’s linked with fatigue, nerve and mood issues, insomnia, cramping, bloating, etc.
    • It’s a learning curve. Take it slowly and build on your knowledge base. You will make mistakes, and they will be painful. You learn from them though and move forward until it’s second nature.
    • It is so important to be your own advocate. If you think something is wrong, FIGHT for your doctors to hear you. I was almost not diagnosed because of my doctors. If your doctor isn’t listening to you, it’s time to find a new doctor.
    • Life goes on, but gluten stays behind – You are going to feel angry, frustrated, and nervous after finding out you now can’t eat some of your favorite foods, and while you may think “life as you knew it is over,” you need to change your mindset and focus on what you CAN eat verses what you no longer can. It will make a huge difference.
    • It takes TIME – Nothing comes easy or fast, and you’ll realize that with this diagnosis. Patience is probably the hardest part because you just want to feel better NOW. Take it one step at a time, and know that things will start to become second-nature to you quicker than you thought!
    • If you don’t love cooking, learn to love it. Start experimenting with different ways to prepare foods that are very tasty to you. Also, don’t take any food for granted. I made a lot of mistakes along the way eating foods that would normally be gluten-free but were not. Above all, be kind to yourself when you mess up and get sick. It happens to all of us.
    • So many different symptoms with this disease, and sometimes, no matter how hard you try to do everything right, in the end, it is your acceptance that maybe you won’t have perfect health with this disease which will help you the most.
    • My contribution is to give yourself permission to grieve – the loss of your life as you now know it, the uphill battle with friends and family to come (“No, Grandma, I can’t use the same tub of butter”), the radical changes coming your way (no more picking up Chinese takeout when you’re too tired to cook). If you try to repress it at the beginning, you’ll wind up standing in the middle of the grocery store, bawling your eyes out because you’ve just read a label and realized you can’t have one of your favorite foods anymore. But it’s just as important to move on from grieving – the radical changes coming your way DO include feeling better, knowing who your true friends are, and learning about lots of delicious food you might not ever have looked into (quinoa, anyone?)
    • It may feel like your entire life revolves around food and eating safely. It may actually be true. Those with other illnesses/diseases have a heightened awareness about what makes them ill. Paying close attention to what you eat is no different. Think of it as saving your own life…your new mission.
    • Advanced planning is part of your life now (as much as food is). Being spontaneous may be difficult but being healthy and having quality of life is so much better. Take a few minutes to pre-plan and everything else will fall into place.
    • ALWAYS HAVE SAFE FOOD WITH YOU!!! Always. If there’s an emergency you need to be able to eat safely.
    • Learn how to say “thanks, but no thanks” to the well-meaning person who insisted they made you a special gluten-free dish for the potluck. If you know they understand cross-contamination, it’s one thing, but for me the risk of getting glutened is so great.
    • My advice is prepare for peer pressure. I don’t mean stress about it. Just prepare yourself. Plan what you are going to do or say at the next company potluck when a coworker wants you to try his or her dish and even though they say its gluten-free, you watched three other people cross-contaminate the dish with the wrong spoon. Be ready for the next family dinner when Aunt Sally insinuates that a little gluten won’t hurt anybody. From interactions to people close to you to complete strangers, have a plan. Write a list of things you can say. Keep your reasons short, polite, and to the point.
    • LEARN TO COOK! You just have to. It’s not that bad. And yes, you have the time.
    • Know that a lot of the time you will feel like it’s unfair. It is unfair that there are people who can be carefree and just walk into any restaurant and eat and you can’t. But try to remember there are people who have it way worse than you. You can cure your body with just food!
    • At the risk of sounding like I am trying to get on Gluten Dude’s good side…the first thing I tell anyone newly diagnosed is GO TO THE GLUTEN DUDE website and meet your people!! I have told GD this but this website was a huge blessing and source of strength to me. The people here are amazing and made my life so much better. (Dude note: I have a good side?)
    • There’s a withdrawal. And it sucks. I’m pretty sure it feels just like going off sugar or caffeine. I felt restless, confused, I ate twice as much as usual for a week and never felt satisfied. Still, cold turkey is the way to go. “Easing” into the gluten-free lifestyle is only delaying the time you will feel better.
    • You will find there are a lot of people spreading rumors, selling dubious products and tests, and just plain nonsensical “information” out there. You need to have a good dose of common sense, a basic understanding of anatomy, a basic understanding of cooking, and the ability to look for reliable scientific or medical information. Don’t believe someone with a slick website calling themself a “gluten free XYZ” or a “doctor of gluten” or some other made up credential.
    • While it isn’t a great thing to have this disease, having it will open your eyes as to what really is and isn’t good for you, as well as teach you to be your own advocate and how to take care of you.
    • You’ll learn how to become a good advocate for yourself. It’s hard – it’s not something that comes naturally to many of us! But it’ll get easier, and know that looking out for your health isn’t being unreasonable, overly demanding, or “too needy.”
    • Socializing will be trickier for a while, but don’t let your world shrink down out of fear. Sharing food is a central part of a LOT of our social moments, and it’s going to take a while for you, your family and friends to figure out a new way of navigating these times.
    • Grocery stores become grief stores. So much of what is sold is completely and forever off limits. Know this, and be ready for the weirdest bouts of grocery store tears. Once when the grocery store was out of my crackers, I wept, openly. This will happen, and its ok. After a while the tear portion of the program will taper off, and the angry section will open its doors. Losing so much food is bound to fire up the emotions. It’s normal and you are totally allowed to express your feelings.
    • Traveling by air and finding food either in the airport or on the plane is usually impossible. Carry your own, and more than you’d think is necessary. Supplement with chips, fresh fruits, and nuts, bought at the airport.
    • Upon diagnosis, I cried, not because of the loss of all those foods I loved – I cried from sheer relief of finally knowing what my “enemy” was. The enemy had ravaged my body and nearly killed me. Focus on how good it’s going to feel to feel good!
    • Stand firm in your goal to become healthy. The enemy has been exposed and it is gluten! Now go fight for your health, and stop spending so much energy on the memory of those foods that robbed you of that health!
    • And finally, never forget your sense of humor! Gluten Dude is an excellent example to us all. Keep pushing forward, never give up, and laugh at yourself and the tough things in life every chance you get.

    And finally, here is my biggest piece of advice. Live Your Life. Do not let celiac hold you back. It’s a bump in the road, but it’s a bump that is manageable. I promise.

    Yes, you’ve got some serious adjustments to make.

    Yes, your body will take some time to heal.

    Yes, you will lose a little bit of freedom and spontaneity in your life.

    But you know what? You’re getting your health back and that’s what matters.

    There is an unbelievable amount of fear-mongering online. “You can’t have this” and “you should stay away from that”. Some of it is accurate. Some of it is complete BS. Stick with the facts.

    Do not live your life afraid to do things simply because of GLUTEN. No matter what people say, it’s NOT everywhere and you CAN lead a normal life (with a few adjustments).

    Take precautions. Educate yourself. Use common sense. And if in doubt, do without.

  • Does anyone out there have celiac AND tourette syndrome?

    Does anyone out there have celiac AND tourette syndrome?

    I have had a long and sordid health history, going way, way back.

    Here’s a brief summary from childhood til now: warts, rheumatoid arthritis, acne, back pain, bladder cancer, celiac disease, pulmonary embolisms, covid 4 times, dupuytren’s contracture, osteoarthritis, melanoma and cracked teeth.

    You can read all about it here: https://glutendude.com/does-celiac-disease-cause-other-health-issues/

    Yes I’m convinced they are mostly connected to celiac.
    No I have no proof.

    But one thing I did not mention that I’ve had since childhood is Tourette Syndrome. Sometimes very controllable. Other times…not so much.

    My parents completely ignored it. Thanks mom and dad.

    I’m nowhere near childhood and I still unfortunately deal with it.

    If you have both celiac and tourette, I would love to hear from you.

  • The Faces of Celiac Disease

    The Faces of Celiac Disease

    3 million Americans and millions more around the world suffer from celiac disease (a staggering 83% of them undiagnosed). This is a real disease affecting real people. Women and men. Young and old. All eating gluten-free to survive and to thrive. What better way to raise awareness than to show the actual faces behind the disease; to build a wall with our pictures and our stories.

    So that is what I did. Over 1,800 fellow celiacs shared their story and a what celiac means to them in one short sentence.

    VIEW THE FACES OF CELIAC DISEASE

  • How to Survive the Gluten-Free Holidays

    How to Survive the Gluten-Free Holidays

    I loved the holidays growing up. And I mean I LOVED the holidays…everything about them.

    I loved the anticipation.
    I loved not having to go to school.
    I loved watching tons of football.
    I loved spending time with my family.
    I loved the presents under the tree (and hopefully loved them just as much when opened).

    And oh…how I loved the food.

    As I grew up and matured (well…grew up anyway), some of that LOVE got lost. I realized how much work my parents put in to make the holidays so awesome for my three brothers and I. They made it seem pretty darn effortless when I now know how much behind-the-scenes work goes into everything.

    But you know what? I still strongly like the holidays. I get some much needed time off from work. I spend more time with my amazing family. My life, which normally moves at breathtaking speed, just seems to slow down a bit and I revel in every single second of it.

    As Ferris Bueller says: “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.”

    So I truly try to “look around once in a while” during the holidays.

    gluten free thanksgiving
    Gobble, gobble from the Mrs. and I.

    Let’s circle back to something that most everyone seems to enjoy most about the holidays…the food. When I think of the holidays, I think of one main staple in our household and that is STUFFING.

    Turkey? There’s a reason we only have it once a year.

    Mashed potatoes? Nothing too exciting.

    Veggies? Yeah right.

    But the stuffing?? The “stuff” that dreams were made of.

    My parents made a very basic stuffing: bread, celery, butter, broth, onion and some spices. Nothing crazy but my oh my, I would have it for breakfast, lunch and dinner. As I entered my teen years, I would volunteer to make the stuffing. I’d set my alarm because I needed to stuff the bird before it went into the oven in the morning because for some reason, even though we always ate dinner at around 6:30, Thanksgiving dinner would start at 4. Don’t ask me why.

    Anyway, I have such fond memories of making, smelling and then of course eating the stuffing. And those memories continued into my adulthood as we would always host Thanksgiving. I loved the tradition. Absolutely loved it.

    Then celiac struck. Not only did it strike, but it struck in October, right before the holidays kicked in. There were four things that I knew immediately that I’d miss. Beer, pizza, bagels and my stuffing.

    But then I had a thought. “They make gluten-free bread. The rest of the ingredients are all gluten-free. I’m totally good!!”

    So Thanksgiving rolls around. Mrs. Dude makes sure we have all of the necessary ingredients to make my kick-booty stuffing. I don’t remember the actual brand of gluten-free bread we used, but remember in 2007, the options were limited. Pre-celiac when I made stuffing, we’d use bread that was slightly stale. When I made stuffing in 2007, even though I used fresh gluten-free bread, it still had that same stale, dry feel to it. I know…kind of gross but I figured I was golden.

    So I make my stuffing. I stuff the heck out of the bird. I put it in the oven and all day long I’m salivating. Everyone is going to LOVE my gluten-free stuffing.

    Pop…the turkey is ready. I get a big spoon and excitedly start digging the stuffing out. Hmmm…not the same texture but I’m sure it will taste just great.

    Wrong! It sucked. And I don’t mean just “not the same”. It was truly disgusting. Can the bread make that much of a difference? Apparently so.

    So that’s my stuffing story. I’m sure you’ve got your own “now I’m gluten-free” horror stories too.

    But what else do we celiacs need to be careful of during the gluten free holidays? Here is some free advice. It comes from the heart.

    1. Cross-contamination: Holidays usually means lots of people. And lots of people means lots of food. And lots of food means lots of hands digging into that food. Do yourself a favor. Keep your food separate. Having a bunch of appetizers? Make a plate for yourself and keep them away from everyone else. All it takes is one slip up and your toast…no pun intended.
    2. Eating at someone else’s house: We almost always host Thanksgiving but then do Christmas at my brother’s house. And I must say I am blessed. My sister-in-law totally gets what gluten-free means, from preparation all the way down to the food itself. I’ve eaten there dozens of times over the years since my celiac diagnosis and I’ve never gotten hit once. But I know others out there aren’t as fortunate. So what do you do if you are going to someone’s house who may have the best intentions but is still not educated enough to prepare a completely safe meal? Well, if I were in your shoes, I’d bring my own food. Yeah…I know…total drag. But at the end of the day, it’s only food. Put the focus on the people and all the sudden the food doesn’t seem as important.
    3. Overeating: I don’t care if you have celiac, allergies, diabetes, gout, crabs or amnesia. STOP eating before you get too full. Your entire being will thank you for it. Load up on water and raw veggies and then just dabble in the sweet stuff.
    4. Getting caught up in the festivities: All it takes is one infraction and you can be down for the count. With all of the excitement and all of the food, there may be some opportunities to let your guard down and cheat “just this once”. Don’t do it. Nothing tastes as good as healthy feels.

    My last piece of holiday advice is simple. Be thankful.

    I know it’s hokey. But the older I get, the more thankful I am every single day for who and what I have in my life. If you go around the table saying your thanks, don’t say what everyone else will say (my family, my health, my iPhone). Dig deep. I’m sure you’ve got a lot to be thankful for, even if you’ve got celiac disease.

    Happy Holidays from the Gluten Dude family to yours.

  • Advice for the newly diagnosed celiac

    Advice for the newly diagnosed celiac

    Just diagnosed with celiac disease? Been diagnosed for awhile now but still struggling? This is for you. Please know that YOU ARE NOT ALONE. We have all been there. The fear, the unknown, the overwhelming effort you feel it is going to take to stay healthy. It can be brutal.

    My goal has always been not just to educate and entertain, but to empower; to give those newly diagnosed the strength, confidence and knowledge they need to get busy living. To that end, I asked my celiac community the following question:

    What advice would you give to the newly diagnosed? Not necessarily what foods to avoid because anybody can look that up. But what have YOU learned from living with celiac disease that you wish you knew when you were first diagnosed?

    Here is some of the spot-on advice they offered:

    From day one, your illness will be trivialized. From the doctors who diagnose you, who can make it seem that going gluten-free is the easiest thing in the world, to anyone you speak to who tell you “there are so many gluten-free things on menus now, there’s never been a better time to do it” (like it was a choice), to the waiters that roll their eyes at you. Rise above it.

    —–

    It’s a learning curve. Take it slowly and build on your knowledge base. You will make mistakes, and they will be painful. You learn from them though and move forward until it’s second nature.

    —–

    Some symptoms will lift immediately. Others will take a while. Be gentle. Know that your body will take a while to recover and that is OK.

    —–

    It takes TIME – Nothing comes easy or fast, and you’ll realize that with this diagnosis. Patience is probably the hardest part because you just want to feel better NOW. Take it one step at a time, and know that things will start to become second-nature to you quicker than you thought!

    —–

    There will be a breakdown of some or many of your relationships. This illness can be debilitating and socially ostracizing. Either you will tire of the people who tell you how they eat gluten-free for “health reasons” and its SOOOO easy, or they will tire of you, because you are now a “burden” at social engagements.

    —–

    You will spend a lot of time apologizing for your illness. Over time you will stop doing this, but particularly in the beginning you will feel like a burden. Sometimes it’s easier not to eat than it is to “cause a fuss.” If anyone makes you feel like this – it’s easier to remove them from your life than it was to remove gluten so feel free to do that.

    —–

    Advanced planning is part of your life now (as much as food is). Being spontaneous may be difficult but being healthy and having quality of life is so much better. Take a few minutes to pre-plan and everything else will fall into place.

    —–

    Attitude is everything in this journey and there’s no other way to say it. Keep your chin up, don’t apologize for having a disease that is out of your control and find new foods you enjoy that are also healthy for you.

    —–

    Know that a lot of the time you will feel like it’s unfair. It is unfair that there are people who can be carefree and just walk into any restaurant and eat and you can’t. But try to remember there are people who have it way worse than you. You can cure your body with just food!

    —–

    You’ll learn how to become a good advocate for yourself. It’s hard – it’s not something that comes naturally to many of us! But it’ll get easier, and know that looking out for your health isn’t being unreasonable, overly demanding, or “too needy.”

    —–

    Some good stuff, right? Want to read even more advice. HERE YOU GO.

  • Surround yourself with good people. You deserve it.

    Surround yourself with good people. You deserve it.

    I’m blessed. I’m more than blessed. The people I surround myself with are friggin’ awesome.

    My wife and daughters? Simply the best.
    My brothers? Very cool.
    My friends? So much fun.
    My in-laws? Amazing.

    But sadly I hear story after story of people who are surrounded by total turds and it just ain’t right. Here’s an email I just received last night.

    We travel a significant distance to celebrate Christmas with my husband’s family. I would prefer we not have a gift exchange, but they insist. We try to put a lot of thought into what we give them, trying to be practical, because as we get older, who really needs more STUFF?I was diagnosed 7 years ago with celiac disease, so it’s not anything new to them. We usually bring the entire meal, so they don’t have to worry about accommodating my diet, not that they would anyway. At least I know I’ll be able to eat/celebrate with them.

    I was very sad when I opened my gift this year to find a giant tin of gluten-filled store-bought cookies!!! I was so taken aback. I said, “Thanks, I’m sure Tom will enjoy eating these.” I know it’s the thought that counts, but then WHAT was she thinking? Giving gluten cookies to a celiac is like giving a basketball to a blind man or a work-out video to someone in a wheelchair.

    I felt very sad. On the way home, in the dark, I shed silent tears.

    The world is an ugly place and it’s getting uglier by the minute. We’re losing our way as a civilization. We’ve been given this amazing planet to live on and instead of sharing our resources peacefully, we argue and we fight and we kill. Over land. Over religion. Over politics. Over money. What a waste.

    My point? Life is short. You deserve to be happy. We all deserve to be happy. Celiac or no celiac.

    If you are surrounded by people like the above, get them out of your life. It’s inexcusable for anyone EVER to give a box of gluten-filled cookies to a celiac.

    Get the toxins out of your life and find yourself some peace.

  • Gluten-Free Love Story: To Infinity and Beyond…Celiac

    Gluten-Free Love Story: To Infinity and Beyond…Celiac

    Years back, I had people send me gluten-free love stories. There were no rules. I ended up receiving a lot of them and I will post them sporadically on the Daily Digest. The following one sticks with me to this day.

    —

    Our love story is not a conventional one. It is definitely one of love. But also a long, complicated, emotional, work in progress….our lovely life.

    In 2004, I married the love of my life. A hard working, loving, caring, intelligent person who would help anyone at anytime if it was in his power. We did everything together. We loved our lunch time phone calls from work and our weekday meals. We looked forward to the little mundane things, like long walks and short drives, and tv shows on Tuesday and Thursday nights. We were so predictable. We thought we had a plan, one to last a lifetime.

    In 2006, we were pregnant! We were having a baby due to arrive June 2007! I was very sick throughout the entire pregnancy. I was placed in the hospital 3 times with dehydration. Who would have thought, possibly Celiac was to blame. (I had been anemic since I was a young girl). I heard…“Keep eating the BRAT diet, it’ll help”. I’m sure that whole grain toast did me well.

    We referred to our little bundle as “the Golden Child” all the time. (Fittingly, if you ask his hair color now, he will tell you it is spun gold.)

    Just two and a half short years later, in December 2009, our world was shattered. My husband, and amazing father to our son, left for work and never returned. It was an accident. There are simply no words to describe this time in our life.

    Every morning I woke to a bright blue eyed boy with and an amazing smile on my his face. That smile breathed new life into me everyday. And it became clear, though this wasn’t the life we signed up for, I have to provide a life worthy of this little person because he has already moved mountains in my world.

    Last April, I became sick and had a high fever. I went to the Dr. I was diagnosed with pneumonia and lyme disease. Odd, as we are not outdoor people and it was April in Ohio. I was then placed on heavy antibiotics and referred to an infectious disease Dr. who confirmed it was a virus.

    I decided to change my PCP. It was a great move. I found a very caring Dr. She took the extra steps, given our situation. She ordered a set of blood tests which showed definite malabsorbtion issues. Alot of blood tests later, it was confirmed; off the charts Celiac Disease and Hypoparathyroidism. I then proceeded to get 8 rounds of iron infusions. I went to a GI Dr., had a biopsy through an endoscopy and it was confirmed definite Celiac.

    The possibilities that were running through my mind, were very scary. My son (age 5) said, “it’s just a food thing.” This is great! What a positive spin.

    It was recommended to have my son tested for Celiac by the nutritionist, my PCP, and the GI Dr. So, we found ourselves in the lab, giving blood one more time. The nurse said close your eyes and think of the beach. My son said, “You forgot the rubber band on my arm and the ball for me to squeeze. There’s no need for me to look away or think of a beach, I am not afraid.” A surprised nurse asked if he would like a job.

    Luckily, my son does not currently have Celiac Disease. Yet, he still checks every label. He knows to look for the words wheat, gluten, rye, barley, etc…all the important ones found on the ingredient label. And he is certain to let everyone know if they offer me food at a function, it has to be gluten free. He looks out for me in every way.

    After following a gluten free diet and finishing the 8 rounds of iron infusions, my stomach issues were escalating. I went to a new GI Dr.; my son by my side through it all. He said to my son, “you will like me, I am going to help your mom.”

    My son, skeptical, said “we’ll see.”

    This already dedicated GI Dr. was even more determined to figure out the cause. I had a colonoscopy on December 23rd. And I was diagnosed a week and a half later with Lymphocytic Colitis. Since this diagnosis, and treatment, my quality of life has vastly improved. No more sleepless nights due to GI issues. I have yet to see my endocrinologist. The appointment is fast approaching. And I have to get labs drawn again soon to see if my iron levels are maintaining.

    Whenever there is a down moment or I look like I am reflecting, my brave son tells me “chin up buttercup”, something my husband used to say to me all the time.

    And I tell him “I love you to infinity and beyond”, something his dad and I would always say to him before bed. The last thing his father said to him.

    I know I can get through anything as long as I have the love of this 5 year old little Golden Child.

  • Can We Just Stop the Food Bullying?!

    Can We Just Stop the Food Bullying?!

    When I was in grade school, I was a prime target for bullies. I was small. I was extremely introverted. I had some nervous tics. And I had long hair. Like longer than every other boy in my school. So grade school was hell for me. My “best friend” would be nice to me when it was just the two of us. But once we got into school, he would join the others in making fun of me. Mike Perry…I wish I could have a few words with you now!

    I remember in fifth grade, some sixth graders stole my bag as I was walking home from school. I foolishly chased them around trying to get the bag back, just what they wanted. When I got home, I told my mom and without delay she got in the car, sped off and I never saw her again.

    Just kidding.

    She tracked the boys down and got my bag back. I’d like to think she gave them a good beat down but I’m sure she at least said her piece.

    Thankfully…in middle school, I found my groove, found some confidence, found true friends and MOST of the bullying stopped. But truthfully, those early days scarred me for life and I still carry it with me.

    So bullying sucks. And it can be deadly as well. Bullying victims are between 2 and 9 times more likely to commit suicide than non-victims. A study in Britain found that at least half of suicides among young people are related to bullying.

    You may be asking yourself how bullying relates to be being gluten-free. Well…sadly…food bullying is prevalent. About one-third of kids with food allergies report they have been bullied because of their allergies. Just a wonderful society we live in, isn’t it? And it begs the question I’d like to ask all food bullies: WHY DO YOU CARE WHAT OTHER PEOPLE EAT? WHAT SINGLE EFFECT DOES IT HAVE ON YOUR LIFE? (Dude note: Yes, I’m screaming.)

    I get emails all the time from parents who have young children with celiac disease. They pour out their souls out to me, telling me what a hard time their kids are having at school just trying to fit in while being gluten free.

    They tell me how other kids put bread and other gluten filled items on their plate because they think it’s funny. They tell me how the school will not help protect their children during lunch hours. They tell me how their children come home from school crying. These are children we are talking about.

    And why does this happen? Let’s talk about two big incidents that occurred within our amazing gluten-free community.

    1. The Disney Channel

    Back in 2013, the Disney Channel had a show called Jessie. It was your basic “nothing is funny but if we add a laugh track, maybe nobody will notice” TV show. I mean…it was just awful. In this one episode, which was online first and set to air on TV in three days, there was one character, a young boy, who was your standard Disney show nerd that they typecast: thin, wears a bowtie, has glasses, etc. Anyway…when the butler (because of course) went to serve him pancakes, he asked if they were gluten-free, which of course they were not? And naturally, hilarity ensued as they made him out to be a weak character. Then another character, a young girl, threw the pancakes at him as he yelled “Gluten. Gluten.” So having him whine about it makes her look like a bully and him look like a total wimp. Why is this is funny?

    Here is one parent’s email to me:

    For my kids, this is real. They have had friends make fun of their food, been disinvited to parties because of their diet. They have been made to sit alone, have had waitstaff roll their eyes and snidely comment about their requests to make their food safe for them to eat. They have watched others, sometimes strangers and sometimes not, act as if their requests are somehow just a trend, just a request of an overanxious parent or a spoiled and coddled child.

    Their condition is real, and their feelings are real. They are ostracized for a condition for which they did not ask, and because of which they will spend their entire lives having to make exceptions and special requests, all to keep them healthy and safe. They will often feel excluded or different, because they have to be to avoid serious illness.

    Yet Disney gave children permission, and an example, to further isolate my children and others like them because of their medical conditions.

    So I wrote a blog post about it and started a petition on Change.org. Within 24 hours, it garnered over 10,000 signatures, the story was picked up by all of the major media outlets and Disney pulled the episode before it aired. It was a true victory for our community. Of course, not everyone was pleased. For the next week, I got brutally slammed by hundreds of people over all my social media channels. And I guarantee you, the people who slammed me? Those are the bullies.

    2. Party City

    Party City ran an ad yeaars to promote one of their products, though you would never know it. Here’s how the commercial went down:

    – Person 1 walks in and comments to person 2 what an amazing spread of food she has.

    – Person 1 points to a small dish of unappetizing crackers on the side and asks what they are.

    – Person 2 says “those are some gluten-free options.”

    – Person 1 asks “Do we even know people that are like that?”

    – Person 2 answers with “Tina?!”.

    Dude note: By the tone of her voice, they are inferring that Tina is annoying and high-demand. No disease or anything. Just annoying because she eats gluten-free.

    – Person 2 responds “Oh gross…yeah.”

    Again…our community went into overdrive and the ad was pulled.

    But the question remains. Why are we a target of food bullying? I mean The Today Show called celiac the “trendy new disease”. Jimmy Fallon portrayed us as losers. Joy Behar said we were irritating. Hoda Kotb called us picky eaters.

    We eat gluten-free because we HAVE to. It is our medical treatment. Yet it continues to be a running joke in the media. And that trickles down to people who are consuming the media and the bullying proceeds.

    So what’s the answer? I wish I knew. It seems our country has broken down into two sectors: those who have true empathy and those who think we should all just suck it up. And that divide seems to be getting stronger and stronger.

    While I may not have an answer, I do have a piece of advice for those who are on the “suck it up” side:

    I know you really don’t care about anybody but yourself. And I know you like to belittle people who you feel are beneath you. Maybe you were bullied as a child and the cycle is hard to break. Or maybe you’re just a contemptible wanker who gets his/her kicks out of making others feel bad. Whatever the reason, please understand that we what eat has NOTHING to do with you. Take that negative energy that is consuming you and put it toward something good. The world is a mess. Let’s work on being part of the solution and not part of the problem. Let’s make this a better place to live.

  • Back to School: A Letter From a Mom to a Daughter with Celiac

    Back to School: A Letter From a Mom to a Daughter with Celiac

    When I was kid, oh how I hated September. It meant my summer at Long Beach Island was coming to a close. It meant shorter days. It meant cooler nights. And it meant…EGADS…back to school!!

    I wish I could say I had pleasant memories of my school years. But between you and I, I pretty much detested it; from grade school, where I got bullied, all the way through college, where I never found my footing.

    I know it’s important. I just wished I enjoyed it more.

    But I didn’t deal with celiac as a child. And I don’t have a child with celiac. And I know back to school can mean something totally different for people in those shoes. I could give my thoughts on it, but instead I’d like to share a letter a mom privately shared with me (and gave me permission to share with you). That adorable little girl in the school bus above is a fellow celiac and here are her mom’s words as she sends her off to school.

    Mom…take it away.

    It is that time of the year, again. That time when most moms and dads are thinking of school supplies, uniforms, bus rides, teachers, classmates, lunch menus and, in three words, everything related to “Back to school”. For me, my husband, our daughter and all the families out there with children with CD these three words have another meaning: FEAR.
    It’s that time of the year when we wake up in the middle of the night thinking: will our daughter’s 3rd grade teacher understand the meaning of CD? Will she/he be supportive and understanding? Will she/he talk about allergies and diseases with her/his class? Will she/he notice when and if our daughter gets glutened? Will she/he even consider extra TLC for our precious girl if this happens? Is the school cafeteria going to be a gluten nest with all the possible scenarios for cross contamination? Will our daughter’s friends and classmates be thoughtful on what they eat and how the eat it around her? Will her classmates’ parents be thoughtful, careful and understanding when sending snacks to the classrooms?

    The only right answer is and always will be: MAYBE.

    I am not going to lie. Our daughter has attended the same public school for the past 3 years and the teachers have all been very supportive and understanding. Our daughter has been exposed to gluten in many ways and forms on a daily basis, reason why feeling that fear in the bottom of our hearts will never disappear. But one thing for sure has changed. Our daughter’s sense of responsibility and understanding of her CD.

    She, by the way, at only 8 years of age has asked me to PLEASE not use the word DISEASE when we try to explain to the rest of the world what she cannot eat, since she doesn’t see it as a disease. And she’s 100% right. She can get sick if she ingests gluten. She can get sick if she’s not careful with CC. She can get sick if she doesn’t ALWAYS read labels and ingredients’ lists. She can get sick if she doesn’t wash her hands before and after eating anywhere.

    Other than that, as hard as sometimes can be in a world packed with products with gluten, she’s a happy, healthy, sweet and smart girl, living her life at the fullest, avoiding the big G in her life. Gluten.

    She has learned to live with the always hard:

    – “sorry, you can’t have that because it has gluten in it”
    – “sorry, you can’t eat that because we are not sure of the ingredients”
    – “sorry you can’t eat that because it may have been exposed to cc” scenarios

    And, yes, it will always be hard. It is actually TOUGH.

    But she has taught me a valuable lesson: as a mom I will always live with fear of seeing my precious daughter get sick, but she has taught me also to live with HOPE. 10 years ago there were very little certified GF items. We still have a long way to go with the food industry but we have come a long way too. 10 years ago Celiac Disease and Gluten were almost never mentioned. Almost like they were non-existent. Now, the word is out, people are being diagnosed on a daily basis and we THE CELIAC COMMUNITY are all responsible for sticking together and raising awareness.

    So let’s learn from our little celiac warriors and wish them luck this school year!

    To our precious girl, we love you to the moon and back. We are and will always be here for you. We will walk this journey with you. Keep going STRONG and confident. Go ROCK that 3d grade and go kick that big G in the butt!

    Love always,
    Mom