Celiac isn't a word you'll often hear in my house. Disease is a word you'll never hear. It's not that celiac disease isn't a problem in my house, it's a gigantic issue in my family. But it's not a problem. It was a problem. It was the reason for lots and lots of problems and almost stole my baby from me. But that's the bad stuff and I don't dwell on the bad stuff. We don't dwell on the bad stuff. Not that it's forgot, just that it's over.
Gluten & Gluten Free are words uttered all day, every day. Why? Because it's important. I'm hesitant to say this but being gluten free does define who we are as family and as individuals. All 5 of us. We don't eat gluten free, we ARE gluten free, and yes, there is a difference.
Gluten Free is our life. It more than our medicine. It saves us from pain and illness. It makes us happy. It is hard. It makes us stronger. It is annoying. It exemplifies our willpower and our strength. It requires thought and planning and creativity. It actually can be fun. It bonds us as a family. And we all have to care about every table we sit at and every bite we put into our mouths. And thats okay because gluten free makes us good. And gluten makes us not good.
My kids know what gluten is and that it is something they can't have. And most days, they are okay with that. My 7 and 8 year old are experts. They speak intelligently on the subject and often answer questions posed by teachers and other students. They are role models. When my son wrote a biography about what makes him special, being gluten free was high on the list, right behind being a great football player. Even my 3 year old knows to ask if a food is gluten free and never ever complains if I tell him he can't have something because he KNOWS if it's not gluten free it hurts his tummy. Gluten free food feels good.
We all miss a good pizza. But we didn't appreciate a good pizza back when we could. We ate it. A lot. Too much. And enjoyed it. But now, when we indulge in a gluten free pizza, it's a project that requires traveling to a place we deem safe and spending a small fortune, and we relish each and every bite. Pizza night is a party, a big deal, not a quick bite on a random rushed weeknight. And that's good.
My two sisters are gluten free. One of them tested negative for celiac but after avoiding gluten for a while, realized it was most definitely a problem, a problem she and her doctors had been looking for answers for for years. My other sister didn't get tested but tried it and found her daily migraines completely vanished. Her doctor is shocked. And interested. I've found my own doctor has less knowledge than I do yet maintains a gluten free diet himself. I can tell you horror stories from doctors in the past, but that's the bad stuff I'm not dwelling on. Same story as you've heard before, many doctors, different kinds of doctors, no answers to serious problems. But the tides are changing. Not because the science and the research are improving, that's still a slow go. It's people. Ordinary people. People who are sick and sick of having no answers. People whose kids are sick, physical or mentally. People are catching on and asking questions. Seems doctors are hearing more and more from folks that tried gluten free on a whim and found it to make a difference in their lives. It makes me angry that many doctors are behind the learning curve but that is changing. And that change is very good.
The celiac community taught me everything. And Google. When my baby was sick and I was desperate, I found enlightenment at celiac.com and heard stories and advice on their forum. I shocked the docs and found the cure for what they deemed uncurable. My baby wasn't sick for no reason, he was sick for a reason. A stupid reason, it was toast and chicken broth that were doing him in. When I noticed right away how gluten free was changing the whole family, it wasn't the doctors or the nutritionist or the dietician that got me on track in this tumultuous celiac world, it was Google again with celiaccentral.org, About.com and the wonderful world of twitter that educated me and made me not feel so alone. People helping other people. Smart, informed and inspirational people. Because they know. And they know most people don't know. Expertise comes from living the journey. And well, someone on twitter said it well, something like this... When celiac affects you or your children, you suddenly become an advocate, because you have to. And I might add, it's also because you want to. When I share my story or what I've learned, it's because maybe I know something that might helps someone else not suffer so much. Over food. If I help 1 person then I done good. Lots of people out their doing good. The celiac community is so so good.
But it bothers me that the amazing celiac community is getting kind of angry and kind of stale. It has no humor. And fights among themselves. It often doesn't like that the celiac gluten free world, the 1% celiac, recently, officially, scientifically opened up to the masses - the gluten sensitive, the 6%, or maybe 20%. I even saw 1 doctor estimate the stats to be closer to 60%. Millions and millions of people who don't tolerate gluten either. But there are no tests to confirm it. And little scientific understanding. And lots of misunderstanding and guessing. Sometimes bad and sometimes good.
Out of no where, the gluten free market has exploded. And it is full of uneducated people kind of trying it out. Hopeful people. But confused. And companies catering to gluten free consumers. And both are getting it sometimes right and sometimes wrong. Mostly because they don't know any better. It's hard to convert a celiac to a gluten free life, it's harder to fully convert someone who hasn't been told gluten free is a medical necessity but thinks they are doing something good. And for many of them, they are doing something good. And if they get it right, maybe their life could be good too.
But the gluten free world is a mess. Those of us who have to be gluten free have to explain at a restaurant that our gluten free is the serious kind, we need to triple check a package label because sometimes gf isn't all that gf after all. It's not always good. But having options, expanded selection in the supermarket and more restaurants offering options beyond a salad, we'll that is good.
The thing that drives me batty is... Celiacs spend too much time being serious about their disease and being angry at those who want some of the gluten free magic for themselves. Or getting angry at a joke about the gluten free craze. Hello my fellow celiac community members... WE HAVE A DISEASE WHERE PIZZA IS POISON. WHERE A CROSS CONTAMINATED SPOON CAUSES TORTURE. It is awful, it is painful, but come on - it is kind of humorous. Not the disease, that's not funny, but the ridiculousness of it all. Show of hands, who has ever brought their own silverware to a restaurant? Who ever drilled a bartender about the source of their vodka? Death by breadcrumb should be our motto. Yeah, it is our reality, but it is weird and really, really interesting. And it is wonderful when people talk about it. In our schools, in restaurants, in the neighborhood, in the media or on late night tv. Let's talk about it. I don't like it when it's talked about wrong, but when the talk is right, that's good.
My point in writing this too long piece is that I have a message. It's a good one.
Hey Celiac Community - I have 3 things you need to hear this Celiac Awareness Month:
1. No one wants to hear about a disease. The word celiac is icky. As soon as you say the words disease or awareness, most of your potential audience tunes you out. But people DO WANT TO HEAR about other people who were sick and got better without drugs or medicine. The words "gluten free" are cool, they are trendy and when you use them, people will listen to you. It's a marketing thing, capture your audience with buzzwords, it's a trick and it is good.
2. Obsessing over the seriousness of the illness makes us look like even more ridiculous than the the ridiculousness of our lifestyle. My feeling is, I control this disease and if I do my job right, I dont have to think about this disease progressing. People, children... are dying from cancer and heart disease and battling degenerative diseases and genetic diseases for which there is no cure... These are scary and heartbreaking and very very bad. (And sometimes may even be gluten related but I'll save that for another day). And our disease has a food fix. So perhaps it is time to lighten up. Talking about gluten is good. Talking about how good it is to be gluten free is good. Talking about how horrible things were before going gluten free is good. Encouraging every one of us who is trying to make a difference is good. Accepting that our disease is ridiculous and seems a bit funny, we'll that can be good too.
And most important...
3. Let go of your frustration with the fad dieters, the tryers, the gf trend setters and the companies hoping on the gf bandwagon. Stop fighting them and educate them, let's be teachers and find creative ways to educate the masses.
We are the 1%. The gluten free revolution is happening, like it or not and WE NEED TO LEAD IT. We need to stop caring WHY others want to be on our gf roller coaster ride and start operating the ride. Let's drive this crazy train before it spirals out of our control. Let's educate. Encourage dialogue, even if it's in a late night monologue. Let's stop ranting and start yelling our message loud and clear. Let's think bigger. Be bolder. Reach farther. And laugh at ourselves more often.
Monday, May 12, 2014
Tuesday, May 6, 2014
The Gluten-Mental Health Connection
A hundred years ago, schizophrenia was known as "wheat-madness", yet today - most are surprised that there is a connection between gluten/wheat and mental health. I am not an expert, but witnessed a transformation in my husband when my son was diagnosed with celiac and we all went gluten free. Yes, it turned out that celiac/gluten was his problems too... but the mental health connection - that blew us away. And so the research began and it became evident that gluten plays a role for many living with mental illness. Here is a collection of findings and professional articles - note the gluten connection to schitzophrenia has been documented/studied for some time, while the connection to bipolar disorder, anxiety, depression, adhd, etc is "newer" with less evidence. Celiac disease is often referenced but note that the newly accepted Non Celiac Gluten Sensitivity shares common symptoms but is more difficult to diagnose.
Markers of Gluten Sensitivity and Celiac Disease in Bipolar Disorder
Neurologic and psychiatric manifestatio - PubMed Mobile
http://glutenfreegirl.com/2013/02/on-why-i-am-so-happy-now/
http://azarherdmanagement.blogspot.com/2014/02/how-going-gluten-free-combats-my.html?m=1
http://m.washingtonpost.com/national/health-science/can-what-you-eat-affect-your-mental-health-new-research-links-diet-and-the-mind/2014/03/24/c6b40876-abc0-11e3-af5f-4c56b834c4bf_story.html
http://www.glutenfreesociety.org/gluten-free-society-blog/are-food-allergies-affecting-your-brain-part-1/?utm_content=bufferdf114&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
http://dineaware.wordpress.com/2013/10/22/gluten-makes-me-sad/
http://www.phoenixhelix.com/2013/12/01/angies-story/
http://nourishedkitchen.com/nutrition-mental-illness-chronic-pain/
http://glutensensitivity.net/cases.htm
Markers of Gluten Sensitivity and Celiac Disease in Bipolar Disorder
Neurologic and psychiatric manifestatio - PubMed Mobile
Is Gluten Making You Depressed? | Psychology Today
Evolutionary Psychiatry: Gluten and Schizophrenia Again (with an added splash of Toxo!)
Can Eating Wheat Cause Psychiatric Problems?
The Hidden Link Between Gluten Grains and Schizophrenia
Studies show gluten sensitivity in people labeled with schizophrenia and bipolar (and how gluten can effect a lot of us regardless of dx) | Beyond Meds
Prevalence of celiac disease and gluten sensitivity in the United States clinical antipsychotic trials of intervention effectiveness study population.
Gluten Sensitivity Presenting as a Neuropsychiatric Disorder
Why So Sensitive? The Effects of Gluten On The Mind
Developmental Disorders and Dairy Products, Grains, Gluten and Other Proteins
Personal Stories
http://m.anchoragepress.com/news/the-gluten-made-her-do-it-how-going-gluten-free/article_39e2478e-4585-11e2-a80c-0019bb2963f4.html?mode=jqm#.UqyWmUuYGjs.twitter
http://glutenfreegirl.com/2013/02/on-why-i-am-so-happy-now/
http://azarherdmanagement.blogspot.com/2014/02/how-going-gluten-free-combats-my.html?m=1
http://m.washingtonpost.com/national/health-science/can-what-you-eat-affect-your-mental-health-new-research-links-diet-and-the-mind/2014/03/24/c6b40876-abc0-11e3-af5f-4c56b834c4bf_story.html
http://www.glutenfreesociety.org/gluten-free-society-blog/are-food-allergies-affecting-your-brain-part-1/?utm_content=bufferdf114&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
http://dineaware.wordpress.com/2013/10/22/gluten-makes-me-sad/
http://www.phoenixhelix.com/2013/12/01/angies-story/
http://nourishedkitchen.com/nutrition-mental-illness-chronic-pain/
http://glutensensitivity.net/cases.htm
Related Issues
Violence, Aggression, Conduct Disorder
Crime Times- linking brain dysfunction to disordered/ criminal/ psychopathic behavior
Saturday, February 22, 2014
Don't Feed The Kids
This post is in response to a Huffington Post Today's Mama blog post "Why Do Your Kid's Allergies Mean My Kid Can't Have A Birthday" which you can read here
Dear Carina and millions of moms who share your frustration,
I was you. Frustrated parties were a food headache for me.
Kinda proud to say my kids, thankfully no food problems with us. Felt
incredibly sorry for the moms that had to deal with THAT drama. Annoyed that
drama had to be my problem.
My 3 kids, they were all good.
At age 4 my little princess got hives from
strawberries and then suddenly, I was in the club – food allergy mom – no
strawberries for the princess¸ keep those strawberries away from us. Oh it was
heartbreaking, we had to give up our beloved trips to the strawberry patch and
she had to give up her favorite food and ice cream flavor. Oh man, it was
rough. The best friend wanted a strawberry cake for her birthday and her mom
bought us a special cupcake. Yep, I knew that day, I was in the club.
Three year later, I learned that I HADN’T A CLUE!
At 1 ½ years old, my big strong
baby boy got sick, really sick – doctors didn’t have any answers and he was
dying. Tbear (as we affectionately called him) dropped from 30lbs to 20lb in 6
weeks and withered into a child who couldn’t stand, couldn’t sit up without
assistance and ate with a deep hunger followed by violently losing it in both
directions. No thanks to the top notch medical team, we discovered his reaction
was a autoimmune reaction to gluten. Celiac disease it was. That gluten filled
stuff that all of us love had suddenly become a toxic poison in his system. And
the disease, well it caused his body to also reject dairy and soy. Tbear got better rapidly on a restricted diet and oddly, the rest of the family, we started changing too. Turned out,
we didn’t have a clue but celiac was not just Tbear's disease, we had a house
FULL of autoimmune reactions to gluten and bad reactions to dairy. We had had a
multitude of physical and mental health problems that disappeared, some of
which we didn’t even realize we had until they went away. For the record, if your gluten-filled cupcake
is anything like an oreo, it will land my 8 year old in the hospital for days
with internal inflammation that appear like his insides are literally about to
burst. A crumb from that cupcake or a little milk in the frosting, that will
turn our happy home into a house of horrors for about 3 days. But that's my problem. Other moms have it way worse.
So here we are. A gluten free, dairy free, soy free, oh and
I almost forgot, strawberry free family and we don’t want any bit of your
gluten-filled cupcakes or pretty much anything you have to offer. Eat em up, we bring our own treats, everywhere we go. Don't worry about us. No pity either, we've never been better!
But here’s the thing, we aren’t alone. When I learned that
my daughter’s classmate had a anaphylactic reaction to dairy and another to peanuts I started paying attention.
1 in 13 kids has a food allergy
1 in 100 has celiac disease (and research is suggested this number may be closer higher)
1 in 10 have a gluten sensitivity
The consider this, diet is now believed to play a critical role for many other children like:
1 in 50 with autism-spectrum disorder
1 in 10 with ADHD
1 in 10 with asthma
1 in 10 with Juvenile Diabetes
And this list just skims the surface – factor in eczema and
other autoimmune issues and my head starts to hurt. While I’m no math wiz, I
can tell you… that’s a lot of kids who “may” have a food issue that their parents have to be concerned with. Do you really want to be the one feeding them? Really? So your kid's day isn't ruined? Do you realize how ridiculous that sounds? It's really not your call!
Today is not like yesterday and I don't even want to think about the food-challenges of tomorrow. Your kid isn't my kid or anyone else's kids. There is the one thing that's become abundantly clear
So let your child eat his
cupcakes. But do it at home. Keep ‘em away from school and my kids and all these other kids
who can’t, or maybe just shouldn’t.
As for you and all the other moms who find the food-allergy kids a burden, it time to woman-up and BE TODAY'S MAMA!
Stop pretending that cake makes a party and that not having a cupcake with ruin a child’s birthday. You’ve created that notion, not your child. Rise up to the occasion and change the conversation. Be a role model mom for all the kids, the food-sensitive ones included. Celebrate the birthday with cheer! Replace the cupcake or processed gummy bear and with a goodie bag stuffed with stickers and rainbow looms. Visit the class with a great book or bring a party game. Ask the teacher if you can send in materials for a craft project the kids can get their hands dirty with. Be creative with your talents or offer a tiny fraction of your time. For my daughter’s birthday, we skipped the snack and instead we made a scary spider out of pipe cleaners, felt and feathers. It was awesome. The kids had a blast. And not one child asked “where’s the snack”. And trust me, the teacher preferred it.
As moms today, it is time to evolve and teach our kids that food doesn't make a party.
Thursday, November 14, 2013
Gluten doesn't matter on Thanksgiving
Thanksgiving dinner has become my favorite eating holiday! I love the tradition of menu planning with my sisters, breaking bread with my mom, mashing sweet potatoes with my daughter and baking with my son. And wine. Lots of traditions, all surrounding a simple meal.
This year, our Thanksgiving table will be full. With 9 gluten-free eaters and 7 gluten-lovers, us g-free'ers rule the day. But it really shouldn't matter. You see, gluten doesn't matter on Thanksgiving.
Thanksgiving is the one celebratory meal where gluten is really quite unimportant. Two things all us gluten free folks should consider:
1.) if you need to eat gluten-free, almost everything on the traditional thanksgiving table can be easily made gluten-free.
2.) The preparation & cooking is best when it's a group project, it's not hurried and often - there is wine. This is a great time to bond and an even better opportunity to teach your family and friends a thing or two or twenty two about gf living.
I cringe at the thought of a shared gluten/gluten-free table. It's really not the actual table that irks me, I'm not afraid to sit next to gluten. I afraid of the kitchen the food came from. No matter how hard you try - kitchens are a busy place on Thanksgiving. Making 2 versions of everything is asking for trouble. Spoons will double dip. Foil will re-wrapped on the wrong pan. Someone is bound to sneak a taste with a contaminated fork. Dont do it!
Instead, have a Thanksgiving Sans Gluten Feast (and if you say it with an accent, no one will know what your talking about and just assume you've had too much wine).
Not sure where to start for you Sans Gluten Feast? It's not so hard if you remember these pointers....
* buy a fresh turkey if you can. Be careful, many packaged and frozen turkeys are injected with broth to make it juicy - unless it is labeled gf, assume it is NOT! As for the free one you earn from spending gazillions at the supermarket, you might want to consider donating that one to a local food bank.
*make your own gravy with homemade stock (or buy one if you must - Pacific makes a great gf Turkey Stock), butter and a gf flour/starch mix to thicken. Note that the flour is used to thicken & doesn't affect the flavor at all. Not convinced, toss in some white wine. I find that wine is the secret to Thanksgiving success in countless ways. Moving on
*go farm fresh for your sides. Skip the cans, boxed and frozen packages. Potatoes, sweet potatoes, cranberries and vegis like string beans and brussel sprouts are all naturally gluten free and really, really easy to cook. Simple preparation is key, minimize the ingredients and enjoy the natural flavors
* stuffing can be easily made gf. Think about it, regular stuffing is made with dried out bread cubes. The soft, elastic qualities that make a glutinous bread so awesome are completely wasted in a stuffing. Gluten free bread never had such a perfect purpose! Simply cube up some naturally dry gf bread and let it dry out some more, either overnight or in a 200 degree oven and VOILA perfect stuffing stuff. The great flavors in stuffing come from "add ins" like sautéd onions & celery, bacon or sausages or in my house: dried cherries! Did someone say stovetop? No, no, no - no one will miss the stovetop.
I have to admit, there are two places I might compromise with the gluten-lovers (not in my house but I'm not going to be the gluten-police in your house) so I'd bend on:
1. dinner rolls (just keep those soft fluffy bundles of poison far away from your plate) and
2. dessert. I know pie lovers just need that flaky crust, so I would hate to ruin their holiday. Oh, maybe not hate, welcome to my life. The better choice is... homemade gf delicousness. But that's going to take some effort. My sister and I are both making the dessert thing a personal challenge, hoping to nail a few recipes now so that we can complete our gluten-free feast on a high note. She has already mastered a gf pumpkin-chocolate chip bread and now we are on to pies. Practicing ahead is key. And well, quite enjoyable. I've been experimenting making a (mostly dairy free) pumpkin pie with a store bought gf graham cracker crust & Trader Joes organic pumpkin - it was easy. And awesome! So awesome, my husband bought me another pie crust yesterday and suggested I need to make another to be sure. I'll try to remember to take a picture and post it next time with the recipe, for now, here's my not-so-secret ingredients.
My sister has been experimenting with an apple pie using the new Pilsbury pie crust. Her gluten eating daughter gave it a thumbs up on Instagram, so it must be true.
Okay, so all this advice might work if you are the host. But what if you are an invited guest and already feeling stressed... why not tell your host ahead that you would love to be involved in the plans and prep. Assuming your host knows you have special dietary needs, they are probably more stressed about the meal than you are at this point and would likely welcome the help. No host wants one of there guests running to the bathroom, swelling up like a balloon or passing out after dinner. Okay maybe a quick nap is acceptable in some instances (blame the turkey) but really, no joke - when you've been cleaning, shopping and decorating for days and wake up at 5am to start dinner, you really want your guests to have a good meal and not end up sick from it. But do be prepared to help, if you offer - be ready to assist in menu planning, shopping and prep work - then it's on you to make it work for you. Oh, and do it NOW, not 2-days before thanksgiving. And bring a dessert. And wine.
So don't stress this Thanksgiving! Make this sans gluten feast a great one, get involved, make memories and actually enjoy a holiday meal for once. Just keep reminding yourself, gluten doesn't matter on Thanksgiving.
Have a favorite dish that's a challenge to make sans gluten? Share it here, maybe together we can find a fix.
This year, our Thanksgiving table will be full. With 9 gluten-free eaters and 7 gluten-lovers, us g-free'ers rule the day. But it really shouldn't matter. You see, gluten doesn't matter on Thanksgiving.
Thanksgiving is the one celebratory meal where gluten is really quite unimportant. Two things all us gluten free folks should consider:
1.) if you need to eat gluten-free, almost everything on the traditional thanksgiving table can be easily made gluten-free.
2.) The preparation & cooking is best when it's a group project, it's not hurried and often - there is wine. This is a great time to bond and an even better opportunity to teach your family and friends a thing or two or twenty two about gf living.
I cringe at the thought of a shared gluten/gluten-free table. It's really not the actual table that irks me, I'm not afraid to sit next to gluten. I afraid of the kitchen the food came from. No matter how hard you try - kitchens are a busy place on Thanksgiving. Making 2 versions of everything is asking for trouble. Spoons will double dip. Foil will re-wrapped on the wrong pan. Someone is bound to sneak a taste with a contaminated fork. Dont do it!
Instead, have a Thanksgiving Sans Gluten Feast (and if you say it with an accent, no one will know what your talking about and just assume you've had too much wine).
Not sure where to start for you Sans Gluten Feast? It's not so hard if you remember these pointers....
* buy a fresh turkey if you can. Be careful, many packaged and frozen turkeys are injected with broth to make it juicy - unless it is labeled gf, assume it is NOT! As for the free one you earn from spending gazillions at the supermarket, you might want to consider donating that one to a local food bank.
*make your own gravy with homemade stock (or buy one if you must - Pacific makes a great gf Turkey Stock), butter and a gf flour/starch mix to thicken. Note that the flour is used to thicken & doesn't affect the flavor at all. Not convinced, toss in some white wine. I find that wine is the secret to Thanksgiving success in countless ways. Moving on
*go farm fresh for your sides. Skip the cans, boxed and frozen packages. Potatoes, sweet potatoes, cranberries and vegis like string beans and brussel sprouts are all naturally gluten free and really, really easy to cook. Simple preparation is key, minimize the ingredients and enjoy the natural flavors
* stuffing can be easily made gf. Think about it, regular stuffing is made with dried out bread cubes. The soft, elastic qualities that make a glutinous bread so awesome are completely wasted in a stuffing. Gluten free bread never had such a perfect purpose! Simply cube up some naturally dry gf bread and let it dry out some more, either overnight or in a 200 degree oven and VOILA perfect stuffing stuff. The great flavors in stuffing come from "add ins" like sautéd onions & celery, bacon or sausages or in my house: dried cherries! Did someone say stovetop? No, no, no - no one will miss the stovetop.
I have to admit, there are two places I might compromise with the gluten-lovers (not in my house but I'm not going to be the gluten-police in your house) so I'd bend on:
1. dinner rolls (just keep those soft fluffy bundles of poison far away from your plate) and
2. dessert. I know pie lovers just need that flaky crust, so I would hate to ruin their holiday. Oh, maybe not hate, welcome to my life. The better choice is... homemade gf delicousness. But that's going to take some effort. My sister and I are both making the dessert thing a personal challenge, hoping to nail a few recipes now so that we can complete our gluten-free feast on a high note. She has already mastered a gf pumpkin-chocolate chip bread and now we are on to pies. Practicing ahead is key. And well, quite enjoyable. I've been experimenting making a (mostly dairy free) pumpkin pie with a store bought gf graham cracker crust & Trader Joes organic pumpkin - it was easy. And awesome! So awesome, my husband bought me another pie crust yesterday and suggested I need to make another to be sure. I'll try to remember to take a picture and post it next time with the recipe, for now, here's my not-so-secret ingredients.
Okay, so all this advice might work if you are the host. But what if you are an invited guest and already feeling stressed... why not tell your host ahead that you would love to be involved in the plans and prep. Assuming your host knows you have special dietary needs, they are probably more stressed about the meal than you are at this point and would likely welcome the help. No host wants one of there guests running to the bathroom, swelling up like a balloon or passing out after dinner. Okay maybe a quick nap is acceptable in some instances (blame the turkey) but really, no joke - when you've been cleaning, shopping and decorating for days and wake up at 5am to start dinner, you really want your guests to have a good meal and not end up sick from it. But do be prepared to help, if you offer - be ready to assist in menu planning, shopping and prep work - then it's on you to make it work for you. Oh, and do it NOW, not 2-days before thanksgiving. And bring a dessert. And wine.
So don't stress this Thanksgiving! Make this sans gluten feast a great one, get involved, make memories and actually enjoy a holiday meal for once. Just keep reminding yourself, gluten doesn't matter on Thanksgiving.
Have a favorite dish that's a challenge to make sans gluten? Share it here, maybe together we can find a fix.
Thursday, August 22, 2013
Can gluten and gluten-free eaters co-exist in a shared kitchen? I tried it.
A wonderful week long vacation with 22 family members is an
annual tradition in my family. OBX is our favorite destination, a gorgeous location
with houses big enough for our small army and always a dream kitchen stocked
with every convenience.
We do it, all of us, every single year. Except last year.
Last summer, my 1 ½ yr old Tommy was terribly ill and the only traveling we did
was back and forth to the hospital. So no one went. That’s my family, all for
one and one for all – or something like that.
The day Tommy’s GI specialist
confirmed my suspicion Celiac was the cause of his illness, I tore apart my
kitchen. That gluten crap that we had so loved nearly killed my baby and it was
no longer welcome in my house. Out went ALL the food, the toaster, the spatulas,
frying pans, even the placemats. On that kitchen demo day, I informed my husband and the kids that they now lived in a Gluten Free Zone. We had no idea that we would soon find out
that Celiac wasn’t just Tommy’s disease, gluten was our archenemy. My gluten-loving
mother made her home gluten free too, eating her morning bagel in the car, even
ushering the guest arriving with a pie straight to the backyard. Needless to
say, on my list of worries, getting glutened by cross-contamination at home (or at moms) has not been my concern.
Back to paradise. I admit I was nervous about vacation this
year. My little family of 5 is exclusively gluten free and my 2 sisters are now
gluten-intolerant-gluten-free (you know what I mean, order a hot dog and toss
the roll to avoid the migraine or stomach churn). I talked menus for months, researched
area supermarkets, family members began reading labels on
snacks they planned to bring and new cookie sheets and a colander were packed.
We were ready. And when we settled in, the fridge was stocked with healthy eats
and the pantry was filled with gluten free treats. The poison, I mean non-gluten-free-food,
was kept in a little cabinet on the opposite end of the kitchen.
And on day 1… we were sick. Not super sick. By now we all
know our different reactions, and we were reacting.
I suspected the pots and pans could have traces…the hubby
and I found a Walmart and picked up a griddle (my new favorite cooking method) a
pot and a pan and a few utensils. My sister splurged on a few new knives and
extra cutting boards.
On day 2 we feasted with ease, and on day 2….we were still reacting. This wasn’t fun.
On day 3 I was exhausted and in tears…. I had taken great
care and too much time to prepare our food, I spent our vacation spending money
on updating someone else’s kitchen and all I wanted to do was sleep. And I
think the rest of the crowd was starting to think I had become the
crazy-gluten-lady and surely insane. None of us were super-sick like getting full-blown glutened but....
I looked 8 months pregnant in the little beach dress
that was supposed to look cute (did I mention I dropped 35lbs of gluten-bloat this
year)
I was irritable around my relatives, almost as irritable as
the hubby was with me.
I was sad changing my Tommy’s diaper which had that trademark
glutened scent (be thankful if you don’t know what I’m talking about).
Sad for my hubby that he spent the morning in the bathroom.
Mad at the hubby for sleeping away the rest of what would be
the last sunny beach day.
Sad for my 7 yr old son whose mood swung up and down all day.
Even sadder when the cousins overreacted about the 2 year
old needing a diaper change, when it was the big boy whose “I’ve-been-glutened-poopy-problems”
were stinking up the room.
Mad at the world when
my beautiful little 6yr old girl emerged in her tankini, covered in her “looks-like-I’ve
been-beaten” but really “I’ve-been-glutened” Black & Blues.
I cried that night. Not for us. For the others I’ve read
about or tweeted with who struggle with celiac because their family doesn’t get
it and their kitchens aren’t safe. My family GOT IT and it didn’t matter.
And on Day 4, I took
control. Paper plates. Paper cups.
Plastic knives, forks & spoons. Special GF sponges. Oh, and I took over the
cooking. Almost all of the cooking. And
just about all of the rest of the food shopping. For 22 people. Good cooking too – we are on vacation but I’m
feeding an army kinda-food. Blueberry pancakes. Ribs & BBQ chicken (brand
new grill thankfully). Taco salad. Filet de Beef. Rice. Roasted Potatoes. Two gluten
free birthday cakes. And a LOT of fresh fruit. With the exception of an occasional
donut spotting or slice of bread, we all ate gluten-free. And we ate well. Really
well. Oh, I squeezed in a little
crabbing (man those 3 crabs we caught were good – I cooked them too) and a
little jet skiing.
But mostly I cooked. Or shopped. My family members were afraid, very afraid of
coming near the kitchen and ask me for permission with everything they
touched.
And by the last day of vacation, we were all good. And I was
exhausted. If only we had 1 more week.
What did I learn? A shared kitchen is hard. Really hard. Way
harder than going gluten-free. Cross-contamination is ridiculously hard to
avoid.
If you have to be gluten-free and have to share a kitchen
with a gluten-eater or 22, here are some tips:
Step 1 - get a big kitchen if you can
Step 2- separate your FOOD
Shop like you are shopping for
twins. Buy 2 of everything. One for you, one for everyone else.
Label it. Fancy labels are awesome.
A sharpie works too.
Keep a dedicated gluten free space. Designate a drawer in the fridge and a food
cabinet all yours.
Keep your open package sealed shut.
Use GF storage containers, bags or tape ‘em up.
In other words: Your butter is not
their butter, make it clear. Invest in your own jars like peanut butter and
mayo and sketch out some skull and cross bones or a simple DO NOT TOUCH message,
wrap them in duct tape, then hide them really well.
Step 3: Separate EVERYTHING else in NECESSARY too (this step
may require a second job, one at Williams -Sonoma would work well).
Use your own pots, pans, cookie
sheets, colanders, utensils, cutting boards & potholders too.
Use your own dishes, knives, forks and spoons too. It may seem radical but I suspect dishes or forks cleaned in an over-crowded or less-than-perfect dishwasher are an issue. If you must share a bowl or silverware, wash and clean everything meticulously. Or do as I did and go plastic. But the environmentalist in me says that’s a bad long-term plan. Do be sure to use a dedicated sponge with a scrubber on the back (bonus points if you can find a way to label your sponge).
Step 4: Take control of your food, or be sure that the
person in control of the food knows what they are doing. Educate, educate, educate - resources are endless and this is essential. You
can’t ever heal if you keep getting sick.
Step 5: Man up. Be ready to deal with temptation. Sure a
gluten free pizza is okay but Oh man a steaming hot “normal” pizza is tempting.
Can’t you just hear that little devil on your shoulder saying “what would 1
bite hurt” HA! I know better, I’d never.
But I had to knock my husband over the head with a frying pan to keep him away
from the Krispy Kremes. Fortunately, it was a new gf frying pan!
Friday, May 24, 2013
where's the facts...
Straight talk tonight.
It overwhelmingly frustrating to advocate for a cause that doesn't have it's facts straight.
Those of us who advocate for Celiac Disease have lots of facts, but everyone is using different facts.
Here's what I mean....
or
1 in 133 people
or
1 in 141 people
or
1% of the population
or
1.8 million people
or
2 million people
or
3 million people
or better yet...
according to Wikipedia "the condition is thought to affect between 1 in 1,750 and 1 in 105 people in the United States"
or
90%
or
85%
or
80%
And don't even get me started on the ancestry & demographic discussion.
Why are the facts so confusing and inconsistent?
Should we care?
I think so. It is confusing enough to explain a complex disease such as Celiac without having inconsistent facts and figures to sort-of back us up. I hate to think this but it seems to highlight how unimportant knowing the facts and true diagnosis is to the medical community.
Celiac Disease is a life-altering disease with a food-based cure (if you catch it before it causes too much long-term damage) and somewhere between 80 and 95% of the people living with it don't know it. That should be an embarrassment in 2013.
Maybe we should pick one at random and make it the standard that everyone quotes.
Maybe we should raise a little hell with the research institutions.
Maybe we need to raise some money for a study.
Maybe the pharmaceuticals will do some research while developing their celiac drug.
But I think maybe we'd have the most luck calling on the Consumer Packaged Goods Industry to take the lead. The food companies will be the greatest financial benefactors to an increase in diagnosis.
My rant for the night is complete.
_____________________________________________________________________________
It overwhelmingly frustrating to advocate for a cause that doesn't have it's facts straight.
Those of us who advocate for Celiac Disease have lots of facts, but everyone is using different facts.
Here's what I mean....
The # of people with Celiac Disease in the US is:
1 in 100 peopleor
1 in 133 people
or
1 in 141 people
or
1% of the population
or
1.8 million people
or
2 million people
or
3 million people
or better yet...
according to Wikipedia "the condition is thought to affect between 1 in 1,750 and 1 in 105 people in the United States"
The % of people who have celiac disease but have not yet been diagnosed is:
95%or
90%
or
85%
or
80%
And don't even get me started on the ancestry & demographic discussion.
Why are the facts so confusing and inconsistent?
Should we care?
I think so. It is confusing enough to explain a complex disease such as Celiac without having inconsistent facts and figures to sort-of back us up. I hate to think this but it seems to highlight how unimportant knowing the facts and true diagnosis is to the medical community.
Celiac Disease is a life-altering disease with a food-based cure (if you catch it before it causes too much long-term damage) and somewhere between 80 and 95% of the people living with it don't know it. That should be an embarrassment in 2013.
Maybe we should pick one at random and make it the standard that everyone quotes.
Maybe we should raise a little hell with the research institutions.
Maybe we need to raise some money for a study.
Maybe the pharmaceuticals will do some research while developing their celiac drug.
But I think maybe we'd have the most luck calling on the Consumer Packaged Goods Industry to take the lead. The food companies will be the greatest financial benefactors to an increase in diagnosis.
My rant for the night is complete.
_____________________________________________________________________________
Thursday, May 23, 2013
What I've learned during Celiac Awareness Month
Today is May 23rd. The 23rd day of Celiac Awareness Month.
I was so pumped on May 1st, imagining real media coverage about Celiac Disease, intelligent discussions about the danger of gluten for some and awareness that actually improved the pathetic diagnosis numbers - 90% undiagnosed with any condition that can be screened with a blood test is absolutely unacceptable in today's day and age.
Well, as I reflect on the month, I've learned a lot. Celiac/gluten-related issues have gotten some attention. Not the attention I imagined. Thanks to the Disney debacle, it's gotten attention (if you don't know what I'm referencing, see Gluten Dude who has covered every detail superbly).
Apparently, Celiac and gluten-issues are funny. It's a good joke. People who can't tolerate gluten are whiners. Complainers. Even douches. Hmm.
Today I stumbled upon a mom on twitter. A smart mom, vocal & worried. She has a beautiful baby diagnosed with Failure To Thrive. At 8 months old, he hasn't grown out of his 0-3 months clothes. She's struggled with multiple miscarriages. Depression. Bipolar. She has another child on the Autism Spectrum. Her family has discussed trying gluten-free. But doctors, no - no mention of Celiac as a possibility. WHAT THE HELL?! I am in no way a medical expert, but when a young family exhibits a collection of medical issues that are all known to be related to Celiac and child's life is at risk - why has not one doctor suggested Celiac as a possibility? Why is it that she needs to hear from a stranger on twitter that she needs to push for a celiac test? All I know is that that stranger (aka me) lived through the hell of watching my baby fading away while doctors were telling me to be patient, he had a virus and to follow up in a month, which was all WRONG. Now, maybe celiac isn't the reason for her family's health issues but it most certainly should be considered as a possibility. I'm not laughing.
A mind-blowing before & after story was put together by Debbie Simpson of Adam's Gluten Free Surprise, this blog is a must read. The most startling part to me is the part that is always startling to me... years of suffering for adults before diagnosis, children diagnosed by parents before doctors. I'm still not laughing.
A $70 Million investment was made into Celiac Research this month. Research on causes? No. Research on improving diagnosis? No. Research on celiac connection to 300+ other illnesses? No. AbbVie & Alvine Pharmaceuticals are spending $70,000,000 on phase 2 research for a pill to make Celiac more convenient. Learn about it here. I haven't encountered one person living with Celiac who wants a pill, an antidote, they'd rather just have safe food. Would I buy a pet cobra just because there was anti-venom available at CVS? Not laughing.
Members of the celiac community have been very active this month! Great recipes, information blogs, cool videos, recaps of a huge celiac awareness event, good stuff. Really good stuff. The kind of stuff that has gotten me and my family through the difficult transition to a gluten-free celiac life this year. Inspiring. Empowering. Yet, I hate to say it... the only people paying attention and reading, listening and learning are those of us who already care because they are personally affected by Celiac Disease. The health experts, the news media, the people with power to reach the masses - they aren't listening. To the handful that are reading (Chelsea Handler perhaps) turns out, they are mocking (yes, another Gluten Dude reference)! Not even a chuckle.
My mother is awesome. She's a super-gluten-addict who turned her home gluten-free. For me. She now eats her morning bakery roll in her car so that not one crumb will drop in her house because she wants my family to always feel welcome. She is very accepting. She's seen our hardships, she knows all of my stories, she's taken in my kids at 2am when the baby was sick & we would run him to the ER because I worried he was so dehydrated he may not see morning, she's seen me drop 30lbs and grow real finger nails for the first time in my life, she's seen my daughters bruises disappear, I could go on & on... she's lived through it all with me. But she doesn't understand it. She can't understand it. She tries but it doesn't seem logical to her that suddenly, out of the blue, the bagel I always ate will now make me sick for days. She thinks I'm obsessed and worries that my kids will develop a fear of food. Well, the truth is... yes I am obsessed and yes, I've realized that we should all be more than a little fearful of some of the food we eat.
Celiac is still new to me and my family. One year ago - hadn't a clue. We were a mess. Life was a mess. I knew we had problems but NEVER did I think it had something to do with pizza. Really?! Since I'm a celiac-newbie, I'm still able to take a step back - look at the "situation" the way everyone else does. See it with my mom's kind but baffled eyes.
And yes.... it does seems ridiculous that moms (myself included) would complain to Disney because of a pancake joke. It seems ridiculous that I can't eat an egg fried on the same grill as that pancake. It seems ridiculous that a cookie could land my son in the hospital for 3 days with an inflamed appendix. It seems ridiculous that cross-contamination at a restaurant can cause my belly to swell up like a basketball within minutes and that a week later, my husband and my son are still in pain because of it. It seems ridiculous that my husband's issue with compulsive gambling disappeared along with his bipolar disorder, simply by eating food without gluten.
My challenge to others in the Celiac community it to take a step back and see it from the eyes of your former self.
This celiac disease is unlike any other disease. None of our symptoms are exactly the same. Most doctors do not recognize it and do not understand it. The celiac community is unbelievably active and supportive because those of us living with it are looking to each other for insight and answers.
It's so ridiculous, it's almost laughable.
But I can't laugh. The food choices I make for my family impact every aspect of our lives. And my children will have to grow up with the knowledge to handle this and to face bullying from people who are nothing but ignorant.
But the good news is... they have a disease that is controlled by food, they will grow up, they will be healthy, they will be strong and they will not be suffering without a clue as to why. I wish I could say that for the countless others that aren't so lucky.
We have 8 days left in our Celiac Awareness Month. May doesn't have to end with Celiac being the joke of the month. I still have hope. And I could really use a good laugh.
I was so pumped on May 1st, imagining real media coverage about Celiac Disease, intelligent discussions about the danger of gluten for some and awareness that actually improved the pathetic diagnosis numbers - 90% undiagnosed with any condition that can be screened with a blood test is absolutely unacceptable in today's day and age.
Well, as I reflect on the month, I've learned a lot. Celiac/gluten-related issues have gotten some attention. Not the attention I imagined. Thanks to the Disney debacle, it's gotten attention (if you don't know what I'm referencing, see Gluten Dude who has covered every detail superbly).
Apparently, Celiac and gluten-issues are funny. It's a good joke. People who can't tolerate gluten are whiners. Complainers. Even douches. Hmm.
Today I stumbled upon a mom on twitter. A smart mom, vocal & worried. She has a beautiful baby diagnosed with Failure To Thrive. At 8 months old, he hasn't grown out of his 0-3 months clothes. She's struggled with multiple miscarriages. Depression. Bipolar. She has another child on the Autism Spectrum. Her family has discussed trying gluten-free. But doctors, no - no mention of Celiac as a possibility. WHAT THE HELL?! I am in no way a medical expert, but when a young family exhibits a collection of medical issues that are all known to be related to Celiac and child's life is at risk - why has not one doctor suggested Celiac as a possibility? Why is it that she needs to hear from a stranger on twitter that she needs to push for a celiac test? All I know is that that stranger (aka me) lived through the hell of watching my baby fading away while doctors were telling me to be patient, he had a virus and to follow up in a month, which was all WRONG. Now, maybe celiac isn't the reason for her family's health issues but it most certainly should be considered as a possibility. I'm not laughing.
A mind-blowing before & after story was put together by Debbie Simpson of Adam's Gluten Free Surprise, this blog is a must read. The most startling part to me is the part that is always startling to me... years of suffering for adults before diagnosis, children diagnosed by parents before doctors. I'm still not laughing.
A $70 Million investment was made into Celiac Research this month. Research on causes? No. Research on improving diagnosis? No. Research on celiac connection to 300+ other illnesses? No. AbbVie & Alvine Pharmaceuticals are spending $70,000,000 on phase 2 research for a pill to make Celiac more convenient. Learn about it here. I haven't encountered one person living with Celiac who wants a pill, an antidote, they'd rather just have safe food. Would I buy a pet cobra just because there was anti-venom available at CVS? Not laughing.
Members of the celiac community have been very active this month! Great recipes, information blogs, cool videos, recaps of a huge celiac awareness event, good stuff. Really good stuff. The kind of stuff that has gotten me and my family through the difficult transition to a gluten-free celiac life this year. Inspiring. Empowering. Yet, I hate to say it... the only people paying attention and reading, listening and learning are those of us who already care because they are personally affected by Celiac Disease. The health experts, the news media, the people with power to reach the masses - they aren't listening. To the handful that are reading (Chelsea Handler perhaps) turns out, they are mocking (yes, another Gluten Dude reference)! Not even a chuckle.
My mother is awesome. She's a super-gluten-addict who turned her home gluten-free. For me. She now eats her morning bakery roll in her car so that not one crumb will drop in her house because she wants my family to always feel welcome. She is very accepting. She's seen our hardships, she knows all of my stories, she's taken in my kids at 2am when the baby was sick & we would run him to the ER because I worried he was so dehydrated he may not see morning, she's seen me drop 30lbs and grow real finger nails for the first time in my life, she's seen my daughters bruises disappear, I could go on & on... she's lived through it all with me. But she doesn't understand it. She can't understand it. She tries but it doesn't seem logical to her that suddenly, out of the blue, the bagel I always ate will now make me sick for days. She thinks I'm obsessed and worries that my kids will develop a fear of food. Well, the truth is... yes I am obsessed and yes, I've realized that we should all be more than a little fearful of some of the food we eat.
Celiac is still new to me and my family. One year ago - hadn't a clue. We were a mess. Life was a mess. I knew we had problems but NEVER did I think it had something to do with pizza. Really?! Since I'm a celiac-newbie, I'm still able to take a step back - look at the "situation" the way everyone else does. See it with my mom's kind but baffled eyes.
And yes.... it does seems ridiculous that moms (myself included) would complain to Disney because of a pancake joke. It seems ridiculous that I can't eat an egg fried on the same grill as that pancake. It seems ridiculous that a cookie could land my son in the hospital for 3 days with an inflamed appendix. It seems ridiculous that cross-contamination at a restaurant can cause my belly to swell up like a basketball within minutes and that a week later, my husband and my son are still in pain because of it. It seems ridiculous that my husband's issue with compulsive gambling disappeared along with his bipolar disorder, simply by eating food without gluten.
My challenge to others in the Celiac community it to take a step back and see it from the eyes of your former self.
This celiac disease is unlike any other disease. None of our symptoms are exactly the same. Most doctors do not recognize it and do not understand it. The celiac community is unbelievably active and supportive because those of us living with it are looking to each other for insight and answers.
It's so ridiculous, it's almost laughable.
But I can't laugh. The food choices I make for my family impact every aspect of our lives. And my children will have to grow up with the knowledge to handle this and to face bullying from people who are nothing but ignorant.
But the good news is... they have a disease that is controlled by food, they will grow up, they will be healthy, they will be strong and they will not be suffering without a clue as to why. I wish I could say that for the countless others that aren't so lucky.
We have 8 days left in our Celiac Awareness Month. May doesn't have to end with Celiac being the joke of the month. I still have hope. And I could really use a good laugh.
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