You know what your favorite celiac wants for Christmas/ Hannukah? I'll give you a hint. It is not a strange fake hamster (or a strange live hamster, for that matter). And while world peace would be great, lets be honest, it's probably not happening for a while. So. Simple answer: gluten-free food at your holiday party.
The season of parties is upon us and it can be intensely frustrating for a celiac to attend these soirees. Inevitably, amid the small talk and drinking, the fact that someone is not eating gets attention. Your celiac will probably tell you that it's no big deal, they prefer to bring their own food. Not true! What they would prefer is to eat with everyone else. An equality of food, if you will. The problem that's inherent in the system (anyone?) is that even if you make a gluten-free option, the likelihood that it will be contaminated is kind of high. Even people who are moderately aware of the effects of gluten tend to be less than careful about cross-contamination; "aren't you being just a bit too picky?" "can't you eat just a little?" "it won't hurt you." Add alcohol to the mix and there's almost zero chance that the gluten-free food will stay gluten-free if it's universally available. Therefore, the safe celiac will not partake even if there is a gluten-free option.
So. The more complex answer to what your celiac wants for the holidays: universal awareness of celiac disease and its restrictions.
Friday, December 11, 2009
Thursday, December 10, 2009
Its been a...
It has been almost a month since I put keyboard to screen and let loose. High time, I say, to get back into it. November is always a slightly tough month, but now December is here and demands to be celebrated! As most properly socialized people know, celebrations = food. Therefore...
Most Christmas-y food ever: oyster stew. Every Christmas eve, my family would load up into the van (there were a lot of us) and, eventually, after Christmas visits and services, end up at my grandmother's house for dinner. Some of my sisters detested the traditional meal and demanded an alternative, but, to me, nothing smells as rich, tastes as velvety or has such strong memorial resonance. The oyster stew would be warming on the stove when we arrived, filling the air with a buttery aroma. I am not going to post my grandmother's recipe because, frankly, it's not mine to give. But here you can get Madame Paula Dean's, which looks easy, delicious and, best of all, is gluten-free.
Most Christmas-y food ever: oyster stew. Every Christmas eve, my family would load up into the van (there were a lot of us) and, eventually, after Christmas visits and services, end up at my grandmother's house for dinner. Some of my sisters detested the traditional meal and demanded an alternative, but, to me, nothing smells as rich, tastes as velvety or has such strong memorial resonance. The oyster stew would be warming on the stove when we arrived, filling the air with a buttery aroma. I am not going to post my grandmother's recipe because, frankly, it's not mine to give. But here you can get Madame Paula Dean's, which looks easy, delicious and, best of all, is gluten-free.
Sunday, November 15, 2009
GF Goes Mainstream
Have you seen that new legal show, "The Good Wife?" I'm loving it. The storyline: the wife of a politician having an affair with a prostitute (sound familiar?) has to go back to work when her husband is imprisoned for misuse of political office. Luckily, she's a natural litigator and has very interesting cases come up every week. This past week involved a slip and fall case that implicates the first amendment. It also implicates a gluten-free diet! When the plaintiff is asked why she would travel an extra 5 blocks (or some such number) to go to the kosher grocery store when there was a perfectly good grocery closer to her house, she answers, "My daughter has to eat gluten-free (dramatic pause) and there are more options at the kosher grocery." Spoiler alert: turns out, the plaintiff is in cahoots with the security guy and the whole thing was a scam. I think its awesome that they came up with gf needs as the cover story!
Monday, November 2, 2009
Voting Day
A coworker recently expressed his opinion that celiac is a psychosomatic illness. While he did not say I was crazy, he did say that he thought it was all in my head. This guy is (otherwise) intelligent, has a graduate degree in-what amounts to-logical thinking and somehow believes that a verified autoimmune disease actually does not exist. Because he cannot imagine its existence. It is outside the realm of his experience and ability to empathize. Essentially, he feels that if I could just stop thinking that I have a deadly reaction to gluten, my life would be a whole lot easier.
Now, this guy is a nut. And I laughed when I heard about his insane ramblings. But it stuck with me. And it's got me thinking. What if other people felt this way? What if a lot of people decided that celiac is a choice--and a bad one? What if it became a religious issue? (The Christian Bible does talk about wheat an awful lot; it is not impossible that someone could read it literally and decide that a life without wheat was not condoned by God.) What if people got together and decided that, because celiac was not something they experienced, because the Bible suggests separating the wheat from the chaf, because food issues are an inconvenience, that celiacs could not eliminate gluten from their diet?
Now you think I'm crazy. But bear with me. Tomorrow marks a hugely important day in the life of Americans. It is voting day. A lot of you out there may be thinking that, since it isn't a presidential election, your vote doesn't matter. You could not be more wrong. In almost every state, important decisions are being made about who will be making decisions on your behalf and what you and your friends will be allowed -- or not allowed-- to do. In Maine, a vote is being held on whether your gay friends (and whether you know it or not, you probably have some) should be allowed to marry. In Virginia, there are men up for election who condone bigotry, who have publicly decried a woman's role in working society. If these things outrage you, you should go to the polls. If they do not outrage you, then I would challenge you to put yourself in the shoes of those you think are more directly effected. Imagine you are a gay person in love or a woman who is just trying to do the right thing for her family.
The verse by Pastor Martin Niemoller is relevant tomorrow. We need to stand up for the rights of others, lest there be no one left standing to stand up for us.
Now, this guy is a nut. And I laughed when I heard about his insane ramblings. But it stuck with me. And it's got me thinking. What if other people felt this way? What if a lot of people decided that celiac is a choice--and a bad one? What if it became a religious issue? (The Christian Bible does talk about wheat an awful lot; it is not impossible that someone could read it literally and decide that a life without wheat was not condoned by God.) What if people got together and decided that, because celiac was not something they experienced, because the Bible suggests separating the wheat from the chaf, because food issues are an inconvenience, that celiacs could not eliminate gluten from their diet?
Now you think I'm crazy. But bear with me. Tomorrow marks a hugely important day in the life of Americans. It is voting day. A lot of you out there may be thinking that, since it isn't a presidential election, your vote doesn't matter. You could not be more wrong. In almost every state, important decisions are being made about who will be making decisions on your behalf and what you and your friends will be allowed -- or not allowed-- to do. In Maine, a vote is being held on whether your gay friends (and whether you know it or not, you probably have some) should be allowed to marry. In Virginia, there are men up for election who condone bigotry, who have publicly decried a woman's role in working society. If these things outrage you, you should go to the polls. If they do not outrage you, then I would challenge you to put yourself in the shoes of those you think are more directly effected. Imagine you are a gay person in love or a woman who is just trying to do the right thing for her family.
The verse by Pastor Martin Niemoller is relevant tomorrow. We need to stand up for the rights of others, lest there be no one left standing to stand up for us.
Wednesday, October 21, 2009
Weird Gluten-Free Resources
When you have a baby--at least here in DC--you get signed up for a ridiculous number of solicitations. (Or maybe I didn't see the opt out box). Most of these eventually just peter out. One, however, has followed me relentlessly, like a harmless stalker. Parenting magazine lands in my mailbox periodically and it provides a good thirty-minute distraction. This month the "snack" section caught my eye. Allergen treats! For kids! And their parents! The gluten-free snacks even looked delicious. Most of these, celiac parents are already aware of--like Lucy's Cookies--but it is nice to see them mainstreamed.
Tuesday, October 13, 2009
DC Tops List of Brainiest State, But Bad News For Celiacs
DC has been named the top "brainiest" state in the America according to studies based largely on intake of DHA-fortified foods. Interestingly, medical experts not associated with the study indicated that certain other tests should have been included in the index including, specifically, tests for gluten-intolerance. Apparently, consumption of gluten by those with celiac is a factor in the development of dementia.
Monday, October 12, 2009
The Littlest Lobbyist
Kyle Graddy has begun an early and hopefully effective career as a lobbyist. The nine-year old boy, with severe peanut allergies, described his recent Washington, DC experience for CNN. His eloquently simple description of the issues is maybe the most effective I have seen to date.
Magnesium Deficiency in Celiacs
I was reading this month's Oprah -- yes, I'm a little embarrased to admit it, but I read it for the articles! ahem--and noticed a tiny little reference to the glutens. In a question and answer article on medical issues, someone wrote asking about magnesium and copper deficiencies. The author of the question had been told by a dietitian that he had a severe magnesium and copper deficiency. The expert responding to the question was skeptical, stating that it is rare to see the symptoms of a severe deficiency in these minerals in anyone not suffering from "Chron's disease or a gluten sensitivity". Interesting. Magnesium deficiency can cause serious symptoms, like frequent migraines, personality changes, depression and exhaustion. Worth checking into, for sure.
Tuesday, October 6, 2009
The Economic Benefits of a Celiac Diagnosis
I got a medical bill yesterday. You know those notices you get from your insurance company that say how much the doctor's office charged for a service, how much you paid, and how much they are willing to pay? Before I was diagnosed with celiac, I used to get at least one a week. I was going to the doctor so often, I was convinced that they had a little note on the chart saying: "This one's crazy--disregard all complaints." I had gotten to that crisis point that apparently happens frequently for celiacs--my system was essentially shutting down. In many ways, my life and health have improved exponentially following the diagnosis, yet I have health issues that remain because it took so long to find out what was wrong. So I continue to get those medical bills. Luckily, as I've said here before, I have pretty great health insurance.
Just based on my own experiences, I could have told you that undiagnosed celiac causes an enormous economic burden both for individuals and for the health insurance industry. However, you do not have to take my word for it; the Journal of Insurance Medicine published a study back in March discussing this very phenomenon. Dr. Peter Green of the Celiac Disease Center at Columbia University joined forces with CIGNA HealthCare and, using anonymous data collected from 1999 through 2003, compared more than 10 million managed care patients in the U.S. They divided patients into four sub-groups: (1) newly diagnosed with celiac disease, (2) one symptom of celiac disease but no official diagnosis, (3) two symptoms of celiac disease but no official diagnosis, and (4) three celiac disease symptoms but no official diagnosis. After analyzing the medical resources utilized by each of the four groups, including amount and cost, they found that, after the first few months following diagnosis, the first group had consistently lower resource use and overall costs than the other groups.
Clearly, the study is not perfect. But how could this not make sense? Before diagnosis, those suffering with untreated celiac are sick. The list of symptoms is ridiculous. You have migraines, stomach problems (to put it mildly), extreme fatigue, skin issues, mental health problems. It goes on and on. Of course you are going to see the doctor, if you can. And the longer you go with untreated celiac, the sicker you become. It is an autoimmune disease; eventually it will wear your body out. It has been associated with other autoimmune diseases, cancer, osteoperosis, chronic fatigue. When you get to the point of other illness involvement, the medical costs are not going to go down. And those costs are pervasive.
The conclusion of this study was that early diagnosis would be economically beneficial to the health insurance industry. Yes! An important point! The blood test that ultimately was responsible for my diagnosis cost them about $100 versus the many, many thousands that they had put out previously just looking for what was wrong. But I would take it a step further. Early diagnosis is economically beneficial to just about everyone. Besides the pure health costs, imagine the work time that would not be lost for pointless medical tests, unnecessary hospital stays, care for family members who cannot be cared for by the patient. When you get right down to it, considering that an estimated 1 in 133 people have celiac but only a tiny percentage of those are currently diagnosed, the costs of performing the test on everyone are probably lower than the costs associated with undiagnosed celiac. (That might be an exaggeration. I clearly have not done those calculations.)
While health care is on everyone's minds, its a great time to suggest that your loved ones get tested. A simple blood test might save more than your friend's life... it might just save everyone a ton of cash.
Just based on my own experiences, I could have told you that undiagnosed celiac causes an enormous economic burden both for individuals and for the health insurance industry. However, you do not have to take my word for it; the Journal of Insurance Medicine published a study back in March discussing this very phenomenon. Dr. Peter Green of the Celiac Disease Center at Columbia University joined forces with CIGNA HealthCare and, using anonymous data collected from 1999 through 2003, compared more than 10 million managed care patients in the U.S. They divided patients into four sub-groups: (1) newly diagnosed with celiac disease, (2) one symptom of celiac disease but no official diagnosis, (3) two symptoms of celiac disease but no official diagnosis, and (4) three celiac disease symptoms but no official diagnosis. After analyzing the medical resources utilized by each of the four groups, including amount and cost, they found that, after the first few months following diagnosis, the first group had consistently lower resource use and overall costs than the other groups.
Clearly, the study is not perfect. But how could this not make sense? Before diagnosis, those suffering with untreated celiac are sick. The list of symptoms is ridiculous. You have migraines, stomach problems (to put it mildly), extreme fatigue, skin issues, mental health problems. It goes on and on. Of course you are going to see the doctor, if you can. And the longer you go with untreated celiac, the sicker you become. It is an autoimmune disease; eventually it will wear your body out. It has been associated with other autoimmune diseases, cancer, osteoperosis, chronic fatigue. When you get to the point of other illness involvement, the medical costs are not going to go down. And those costs are pervasive.
The conclusion of this study was that early diagnosis would be economically beneficial to the health insurance industry. Yes! An important point! The blood test that ultimately was responsible for my diagnosis cost them about $100 versus the many, many thousands that they had put out previously just looking for what was wrong. But I would take it a step further. Early diagnosis is economically beneficial to just about everyone. Besides the pure health costs, imagine the work time that would not be lost for pointless medical tests, unnecessary hospital stays, care for family members who cannot be cared for by the patient. When you get right down to it, considering that an estimated 1 in 133 people have celiac but only a tiny percentage of those are currently diagnosed, the costs of performing the test on everyone are probably lower than the costs associated with undiagnosed celiac. (That might be an exaggeration. I clearly have not done those calculations.)
While health care is on everyone's minds, its a great time to suggest that your loved ones get tested. A simple blood test might save more than your friend's life... it might just save everyone a ton of cash.
Thursday, October 1, 2009
Online Social Collaboration Community
There's a new resource in town. Gling is a brand new social collaboration community. It is totally free and the content is member-driven. It combines several social networking forums; members can use the site as a base from which to blog, tweet and post comments. It is primarily focused on recipes, gluten-free friendly locations and foods.
So that's the short and dirty. The real story is that this resource has the potential to be a truly useful, supportive community for those who have celiac or cannot eat gluten. It is a distinctly user-friendly site. It's easy on the eyes, easy to navigate, and easy to contribute. Community members are very welcoming. Within a day of joining the site, I had four previously unknown people "friend" me, which gives me access to their resources. As noted, it is new. Which means that certain of the resources have not had time to get to maximum capacity of usefulness. The locations section is virtually empty for DC. We need members to add gluten-free hot spots. Still, there are great recipes and everyone is there for a single purpose: to spread the word about gluten-free living.
Your mission if you choose to accept it: Sign up for gling and see if we can get the DC location filled with at least twenty spots in the next two weeks. Go!
So that's the short and dirty. The real story is that this resource has the potential to be a truly useful, supportive community for those who have celiac or cannot eat gluten. It is a distinctly user-friendly site. It's easy on the eyes, easy to navigate, and easy to contribute. Community members are very welcoming. Within a day of joining the site, I had four previously unknown people "friend" me, which gives me access to their resources. As noted, it is new. Which means that certain of the resources have not had time to get to maximum capacity of usefulness. The locations section is virtually empty for DC. We need members to add gluten-free hot spots. Still, there are great recipes and everyone is there for a single purpose: to spread the word about gluten-free living.
Your mission if you choose to accept it: Sign up for gling and see if we can get the DC location filled with at least twenty spots in the next two weeks. Go!
Tuesday, September 29, 2009
A Non-Sequitor
I was going to post something about something important, I'm sure. But instead, I will just point out this lovely fact: Glenfiddich is gluten-free. Enjoy.
Monday, September 28, 2009
National Family Day --
Today is National Family Day. I was made aware of this "holiday" by the security guard at my parking garage when he wished me a "happy family day." I replied-- "thanks!"-- without missing a beat, even though I had absolutely no idea what he was talking about. A little googling uncovered a rather depressing fact; National Family Day is a day designated to eating dinner with your family. As opposed to every other day?
Apparently, the day is about getting your kids not to do drugs. If you eat with them, they are less likely to do drugs, the theory being that you are more likely to talk about it if you are forced together at a table for a period of time in the form of the family dinner. (The imagery of this can be funny...imagine a family, awkwardly sitting around the table, and the dad thinking, "Well, we've got nothing else to talk about. Might as well broach that drug thing.")
It occurs to me, though, that the reason eating together as a family leads to lower rates of drug use might be more fundamental. I think food can be a really unifying--and divisive--thing. Eating together, eating the same thing, brings you closer to one another. When you initially go out on a date, how often is it over dinner? And meeting up with friends, don't you usually grab a bite to eat? Similarly, eating separately can make you feel isolated and lonely. If you're at all like me, when you cook for yourself, you eat strange little meals that you would never serve your friends. You eat quickly, not really paying attention, just trying to get it done so you can move on to the next thing.
Unfortunately, even in families that do eat together, those who cannot eat gluten often eat alone. I have heard parents talk about their child being diagnosed with celiac and they, very conscientiously, ensure that the child eats gluten-free, but do not consider changing their own diet. Or when a spouse is diagnosed, the other offers sympathy regarding the difficulties of finding delicious, healthy gluten-free food while housing a sandwich. Or when a friend who shares a house has celiac, the housemates never clean the kitchen after eating bread, pizza, spilling beer. I was very lucky that, after my diagnosis, my husband helped me eliminate every trace of gluten from our home. He's been incredibly supportive and is often more cautious than I am.
I think, in consideration of National Family Day, if you know a celiac or someone who cannot eat gluten, you should join them for a meal. Experience with them how difficult it can be to eat gluten-free. Or, alternatively, show them that it does not have to be a trial. If you have a child who cannot eat gluten, make them something delicious and eat it with them. Just imagine how much closer they'll listen if they know that you care enough to make them feel included. Maybe they won't do drugs! Happy family day to you.
Apparently, the day is about getting your kids not to do drugs. If you eat with them, they are less likely to do drugs, the theory being that you are more likely to talk about it if you are forced together at a table for a period of time in the form of the family dinner. (The imagery of this can be funny...imagine a family, awkwardly sitting around the table, and the dad thinking, "Well, we've got nothing else to talk about. Might as well broach that drug thing.")
It occurs to me, though, that the reason eating together as a family leads to lower rates of drug use might be more fundamental. I think food can be a really unifying--and divisive--thing. Eating together, eating the same thing, brings you closer to one another. When you initially go out on a date, how often is it over dinner? And meeting up with friends, don't you usually grab a bite to eat? Similarly, eating separately can make you feel isolated and lonely. If you're at all like me, when you cook for yourself, you eat strange little meals that you would never serve your friends. You eat quickly, not really paying attention, just trying to get it done so you can move on to the next thing.
Unfortunately, even in families that do eat together, those who cannot eat gluten often eat alone. I have heard parents talk about their child being diagnosed with celiac and they, very conscientiously, ensure that the child eats gluten-free, but do not consider changing their own diet. Or when a spouse is diagnosed, the other offers sympathy regarding the difficulties of finding delicious, healthy gluten-free food while housing a sandwich. Or when a friend who shares a house has celiac, the housemates never clean the kitchen after eating bread, pizza, spilling beer. I was very lucky that, after my diagnosis, my husband helped me eliminate every trace of gluten from our home. He's been incredibly supportive and is often more cautious than I am.
I think, in consideration of National Family Day, if you know a celiac or someone who cannot eat gluten, you should join them for a meal. Experience with them how difficult it can be to eat gluten-free. Or, alternatively, show them that it does not have to be a trial. If you have a child who cannot eat gluten, make them something delicious and eat it with them. Just imagine how much closer they'll listen if they know that you care enough to make them feel included. Maybe they won't do drugs! Happy family day to you.
Friday, September 25, 2009
Gluten-free iPhone apps...as if you needed a reason
Ever since I saw a friend playing with the highly addictive "flick the paper into the trashbin" application on her new iPhone, I've been coveting them. My husband made some noises about giving me one for my birthday (subtle reminder) so I had put-off buying one. I may not be able to wait.
I just discovered that someone has been reading my mind and making iPhone apps from my thoughts! Or maybe I'm not the only celiac who has stood in a grocery aisle, mentally debating whether I want to take the risk of buying an item without going through the whole, check the label, call the company, search the web rigamorale...but no more! Zeer, Inc. has released the glutenScan app, which has a database of over 30,000 specific products and their safety for those on a gluten-free diet. I think I need an iPhone just for this app.
Since discovering this delight, I've found a number of other apps I want to try. There's the iEatOut Gluten and Allergen Free, which tells you what you can eat at restaurants--clearly an excuse for me to eat out more often. There's the iCanEat On the Go, which tells you what you can eat at common chains that would be found along a highway--I'm a little skeptical of the utility of this one. There's the glutenFreed, which searches for gluten-free restaurants for you based on your area.
Now someone needs to create an app that tells you whether there is gluten in certain medications and an app to figure out the difference between the cost of gluten-free groceries versus "normal" for flexspending purposes. Anyone up for the challenge?
I just discovered that someone has been reading my mind and making iPhone apps from my thoughts! Or maybe I'm not the only celiac who has stood in a grocery aisle, mentally debating whether I want to take the risk of buying an item without going through the whole, check the label, call the company, search the web rigamorale...but no more! Zeer, Inc. has released the glutenScan app, which has a database of over 30,000 specific products and their safety for those on a gluten-free diet. I think I need an iPhone just for this app.
Since discovering this delight, I've found a number of other apps I want to try. There's the iEatOut Gluten and Allergen Free, which tells you what you can eat at restaurants--clearly an excuse for me to eat out more often. There's the iCanEat On the Go, which tells you what you can eat at common chains that would be found along a highway--I'm a little skeptical of the utility of this one. There's the glutenFreed, which searches for gluten-free restaurants for you based on your area.
Now someone needs to create an app that tells you whether there is gluten in certain medications and an app to figure out the difference between the cost of gluten-free groceries versus "normal" for flexspending purposes. Anyone up for the challenge?
Monday, September 21, 2009
Lunches For All!
Caution: Political perspective below...
School lunch is apparently on everyones radar. The Child Nutrition Act is up for reauthorization this year and, with the new administration's focus on healthy eating--Michelle's vegetable garden on the White House lawn!--expectations are high that there will be increased funding. According to an editorial in the Washington Post today, President Obama has included an additional $1 billion in the 2010 budget, allocated toward school nutrition programs. That's great. I get it. The numbers from the proposed Child Nutrition Promotion and School Lunch Protection Act of 2009 are staggering.
In case you're not up for reading a bill, I'll summarize: since the 1970s, obesity rates have tripled among children ages 6 to 19; sodium intake is 214% above recommended levels; 85 % of children consume more saturated fat than is recommended; type 2 diabetes, which is primarily due to poor diet and physical inactivity, is rising in children; 1/4 of children ages 5 to 10 show early warning signs of heart disease, such as elevated blood cholesterol or high blood pressure; AND in 1996, children aged 2 to 18 years ate approximately 118 more calories per day than children did in 1978, which is the equivalent of 12 pounds of weight gain annually. Final disturbing fact: the national estimated cost of obesity is $123,000,000,000 a year, (that's $123 billion), 1/2 of which is paid through Medicare and Medicaid.
I am not opposed to reform; I think it's clearly necessary and important. However, let's be clear. Even though food allergies generally are on the rise, and celiac disease affects approximately 1 in 133 people, none of the bills currently introduced address the fact that eating in school can be deadly to many of our children. Why isn't some of this additional $1 billion in funding being used to make sure that every kid can eat? Clearly a bit of a rant, but come on! If they think obesity is expensive, they should calculate the cost of not addressing this gap.
Currently, the only way you can force a school to provide gluten-free food for your child is to have them labeled "disabled" and getting a Section 504 plan implemented. This process can be extremely lengthy depending on the cooperation of your school. The ACDA has provided a handy website that summarizes each state's requirements and gives a "how-to" on getting the ball rolling.
While you're fired up, take a minute to contact your Representative and let them know that school lunches should be available to all kids.
School lunch is apparently on everyones radar. The Child Nutrition Act is up for reauthorization this year and, with the new administration's focus on healthy eating--Michelle's vegetable garden on the White House lawn!--expectations are high that there will be increased funding. According to an editorial in the Washington Post today, President Obama has included an additional $1 billion in the 2010 budget, allocated toward school nutrition programs. That's great. I get it. The numbers from the proposed Child Nutrition Promotion and School Lunch Protection Act of 2009 are staggering.
In case you're not up for reading a bill, I'll summarize: since the 1970s, obesity rates have tripled among children ages 6 to 19; sodium intake is 214% above recommended levels; 85 % of children consume more saturated fat than is recommended; type 2 diabetes, which is primarily due to poor diet and physical inactivity, is rising in children; 1/4 of children ages 5 to 10 show early warning signs of heart disease, such as elevated blood cholesterol or high blood pressure; AND in 1996, children aged 2 to 18 years ate approximately 118 more calories per day than children did in 1978, which is the equivalent of 12 pounds of weight gain annually. Final disturbing fact: the national estimated cost of obesity is $123,000,000,000 a year, (that's $123 billion), 1/2 of which is paid through Medicare and Medicaid.
I am not opposed to reform; I think it's clearly necessary and important. However, let's be clear. Even though food allergies generally are on the rise, and celiac disease affects approximately 1 in 133 people, none of the bills currently introduced address the fact that eating in school can be deadly to many of our children. Why isn't some of this additional $1 billion in funding being used to make sure that every kid can eat? Clearly a bit of a rant, but come on! If they think obesity is expensive, they should calculate the cost of not addressing this gap.
Currently, the only way you can force a school to provide gluten-free food for your child is to have them labeled "disabled" and getting a Section 504 plan implemented. This process can be extremely lengthy depending on the cooperation of your school. The ACDA has provided a handy website that summarizes each state's requirements and gives a "how-to" on getting the ball rolling.
While you're fired up, take a minute to contact your Representative and let them know that school lunches should be available to all kids.
Friday, September 18, 2009
Loud Voices
History is filled with examples of vocal minorities effecting change, so I don't know why it continues to surprise me, but this research blew my mind: "Market research organization Packaged Facts clearly sees the trend toward gluten-free formulations as more than a fad, estimating that sales of gluten-free products will reach $2.6bn by 2012. In a recent report, it said that the gluten-free market has grown at an average annual rate of 28 percent since 2004, when it was valued at $580m, to reach $1.56bn last year." The market has grown twenty-eight percent in five years!
Consider, if you will, the concurrent research indicating that only around 50,000 people in the US have yet been diagnosed, out of an estimated 2 million. Put those together and you've got a very loud minority of the population insisting that our health concerns be addressed through the market. You can see it on store shelves--Chex cereal was reformulated to be gluten-free. And we're only increasing in number. Information like this makes me optimistic that, someday soon, healthy, delicious, gluten-free fare will be standard on every menu and easy to buy.
Consider, if you will, the concurrent research indicating that only around 50,000 people in the US have yet been diagnosed, out of an estimated 2 million. Put those together and you've got a very loud minority of the population insisting that our health concerns be addressed through the market. You can see it on store shelves--Chex cereal was reformulated to be gluten-free. And we're only increasing in number. Information like this makes me optimistic that, someday soon, healthy, delicious, gluten-free fare will be standard on every menu and easy to buy.
Monday, September 14, 2009
Health Care Reform
My beautiful, perfect little son has been sick. For four days, he had an alarmingly high fever and was as lethargic as I had ever seen him. When his fever would not respond to tylonol, his pediatrician recommended we take him to the ER. Which we did. Without hestitation. A couple of hours later, reassured that nothing was seriously wrong, we paid the $50 deductible and went on our way. For me, $50 was an easy amount to pay for peace of mind; I didn't think twice about it. Probably because health care reform has been so much in the news, it did occur to me, even as I paid it, that there is a large population of people that would not have been able to afford to unhesitatingly run to the ER. I was saddened, in that moment, that some mothers might not have the means to ease their worries.
It's been several weeks since we took our son to the hospital and this thought--that health care is not available to everyone--has been increasingly nudging my conscience. Because I do not live under a rock, I've been half-aware of the raucous debate going on across the country. To a large degree, I have tuned out the specifics, finding the "debates" to be mostly ridiculous posturings by angry people. As Barney Frank exclaimed: "Trying to have a debate with you would be like arguing with a dining room table." I was not engaged because: (1) I did not think of how it would directly impact me and, like most people, I'm inherently self-interested; and (2) I had other things going on. Ok, bad reasons. But there it is. My trip to the ER changed that. Let me tell you why it has become clear to me that it is critical that everyone be provided access to some form of health care. Open your mind, please, and imagine, first, that you are a new mother or father. (If this is beyond the realm of possibility for you, imagine that you are a caretaker for someone you love more than yourself). Here we go:
You have a new child. He is perfect in every way, precocious, funny and bubbling with personality. You have been lucky; he's been healthy since the day he was born. His vaccinations are up to date and everything's going well until, suddenly, you lose your job and, with it, your insurance. Cobra is too expensive given the daily costs of living and, besides, everyone's pretty healthy in your family. Then one day, your child's previously sweet disposition turns sour. He's tired all the time and exceptionally cranky. You, already stressed to the point of losing it, chalk it up to the terrible-twos. It's not constant; there are times when you recognize that sweet child of before. Eventually, the crankiness becomes the norm and you don't really notice it anymore. Then, the bouts of diarrehea start. You think, he's got a stomach bug. True, he doesn't have a fever, but kids are like that. More worrisome is that he's slowed down. Where he was tired occasionally, now he's borderline lethargic. He has stopped chatting at you all the time and doesn't seem to be learning as much as he was. On the other hand, you have been busy looking for work. Maybe he is just watching too much tv? You consider taking him to the doctor, but decide that he is probably ok; rent is already late. Then, the nighttime screaming starts. Clearly, he is in pain. You finally take him to the doctor--a clinic that provides free health care. The doctors are harried and overworked. They draw some blood, a horrible experience requiring you to hold your child down, and run some tests. When the tests come back normal, they tell you: "He's just a kid." Except now you are scared. Your son's belly sticks out and he has stopped growing. After yet another night of constant diarrehea, you calculate your savings and decide to take him to the ER. The doctors run what seems like hundreds of tests. Your poor little baby is tiny on that huge white bed and it is terrifying to see him hooked up to machines and wires. After a night in the hospital, after the ER realizes you have no insurance, you are discharged with your sick, tired, scared little boy. And no wiser. You now have over $20,000 in medical expenses and no answers.
Fast forward: Your son has celiac disease. The average time between the onset of symptoms and a diagnosis is nine years. Think about that. Think about what nine years means in the life of a child. Now consider--if that child does not have health insurance, how likely is it that a diagnosis will be made? Frequently, the only way the test is run is if the patient knows to ask about it. If you don't have health insurance, you may not get to that point--the point where you've run out of other answers.
My doctors estimate that I have had active celiac since I was 15. I was not diagnosed until I was 28. And I've had fantastic health insurance that whole time. A child who is suffering from untreated celiac can have serious and lasting health problems. If a child is malnourished during critical growth periods, that loss of growth will likely be permanent. A child who is malnourished will be unable to learn to their capacity, resulting in probably permanent scholastic disabilities. For those of you who feel that the costs of providing basic health care to everyone are too high, I would submit to you--the costs of NOT providing it may be much higher.
Please, take a moment to contact your representative and tell them, we need health care reform.
It's been several weeks since we took our son to the hospital and this thought--that health care is not available to everyone--has been increasingly nudging my conscience. Because I do not live under a rock, I've been half-aware of the raucous debate going on across the country. To a large degree, I have tuned out the specifics, finding the "debates" to be mostly ridiculous posturings by angry people. As Barney Frank exclaimed: "Trying to have a debate with you would be like arguing with a dining room table." I was not engaged because: (1) I did not think of how it would directly impact me and, like most people, I'm inherently self-interested; and (2) I had other things going on. Ok, bad reasons. But there it is. My trip to the ER changed that. Let me tell you why it has become clear to me that it is critical that everyone be provided access to some form of health care. Open your mind, please, and imagine, first, that you are a new mother or father. (If this is beyond the realm of possibility for you, imagine that you are a caretaker for someone you love more than yourself). Here we go:
You have a new child. He is perfect in every way, precocious, funny and bubbling with personality. You have been lucky; he's been healthy since the day he was born. His vaccinations are up to date and everything's going well until, suddenly, you lose your job and, with it, your insurance. Cobra is too expensive given the daily costs of living and, besides, everyone's pretty healthy in your family. Then one day, your child's previously sweet disposition turns sour. He's tired all the time and exceptionally cranky. You, already stressed to the point of losing it, chalk it up to the terrible-twos. It's not constant; there are times when you recognize that sweet child of before. Eventually, the crankiness becomes the norm and you don't really notice it anymore. Then, the bouts of diarrehea start. You think, he's got a stomach bug. True, he doesn't have a fever, but kids are like that. More worrisome is that he's slowed down. Where he was tired occasionally, now he's borderline lethargic. He has stopped chatting at you all the time and doesn't seem to be learning as much as he was. On the other hand, you have been busy looking for work. Maybe he is just watching too much tv? You consider taking him to the doctor, but decide that he is probably ok; rent is already late. Then, the nighttime screaming starts. Clearly, he is in pain. You finally take him to the doctor--a clinic that provides free health care. The doctors are harried and overworked. They draw some blood, a horrible experience requiring you to hold your child down, and run some tests. When the tests come back normal, they tell you: "He's just a kid." Except now you are scared. Your son's belly sticks out and he has stopped growing. After yet another night of constant diarrehea, you calculate your savings and decide to take him to the ER. The doctors run what seems like hundreds of tests. Your poor little baby is tiny on that huge white bed and it is terrifying to see him hooked up to machines and wires. After a night in the hospital, after the ER realizes you have no insurance, you are discharged with your sick, tired, scared little boy. And no wiser. You now have over $20,000 in medical expenses and no answers.
Fast forward: Your son has celiac disease. The average time between the onset of symptoms and a diagnosis is nine years. Think about that. Think about what nine years means in the life of a child. Now consider--if that child does not have health insurance, how likely is it that a diagnosis will be made? Frequently, the only way the test is run is if the patient knows to ask about it. If you don't have health insurance, you may not get to that point--the point where you've run out of other answers.
My doctors estimate that I have had active celiac since I was 15. I was not diagnosed until I was 28. And I've had fantastic health insurance that whole time. A child who is suffering from untreated celiac can have serious and lasting health problems. If a child is malnourished during critical growth periods, that loss of growth will likely be permanent. A child who is malnourished will be unable to learn to their capacity, resulting in probably permanent scholastic disabilities. For those of you who feel that the costs of providing basic health care to everyone are too high, I would submit to you--the costs of NOT providing it may be much higher.
Please, take a moment to contact your representative and tell them, we need health care reform.
Friday, September 11, 2009
New World
It's been two years. Two incredible, event-filled years. I've gotten married, had a child, recovered from the mind-blowing world shift that accompanies having a child and am, finally, regrouping and rejoining society. And in the intervening two years, DC has changed in a million important ways. There's a lot to write about.
I know that the gluten-free community already has two great advocates in the DC area--the DCgluties and the Gluten Free Optimist (who is fabulously splitting her time and writing for the examiner)--but I truly feel that there can never be too many resources. We all have different perspectives and experiences. It is important that people with information on living gluten-free get it into the universe. For sure, it's too difficult to go it alone.
That said, I'm going to try to widen my focus a bit. We in DC are uniquely situated in the epicenter of the political world; it feels almost irresponsible to ignore the opportunities for impact. Therefore, to the extent that issues arise that are relevant to those of us with celiac or who should, for health reasons, live a gluten-free lifestyle, I will attempt to get the word out. I'll still be talking about other gluten-free relevant things, too.
Initially, I want to give a shout-out to the American Celiac Disease Alliance, http://americanceliac.org/, a non-profit advocacy group initially formed back in 2003. This organization has recognized the need for inclusivity; its members include representatives from the medical community, the food industry, and persons living with celiac. They've focused on several issues in the past six years and helped to effectuate the Food Allergen Labeling and Consumer Protection Act (want to read it? you can at http://www.foodallergy.org/Advocacy/FALCPAlaw.pdf). They are now directing their resources to the critical issue of the availability--or lack thereof--of gluten-free school lunches for children suffering from celiac. As we all know, celiac can be particularly devastating in children. It can have a lasting impact if left untreated. Yet many public schools--where our children spend an enormous percentage of their lives--have neither the awareness nor the resources to properly feed a child with celiac.
If you're interested in learning more about this issue, or--as I hope--in supporting the ACDA's efforts, just click on the link to their incredibly handy advocacy page.
I know that the gluten-free community already has two great advocates in the DC area--the DCgluties and the Gluten Free Optimist (who is fabulously splitting her time and writing for the examiner)--but I truly feel that there can never be too many resources. We all have different perspectives and experiences. It is important that people with information on living gluten-free get it into the universe. For sure, it's too difficult to go it alone.
That said, I'm going to try to widen my focus a bit. We in DC are uniquely situated in the epicenter of the political world; it feels almost irresponsible to ignore the opportunities for impact. Therefore, to the extent that issues arise that are relevant to those of us with celiac or who should, for health reasons, live a gluten-free lifestyle, I will attempt to get the word out. I'll still be talking about other gluten-free relevant things, too.
Initially, I want to give a shout-out to the American Celiac Disease Alliance, http://americanceliac.org/, a non-profit advocacy group initially formed back in 2003. This organization has recognized the need for inclusivity; its members include representatives from the medical community, the food industry, and persons living with celiac. They've focused on several issues in the past six years and helped to effectuate the Food Allergen Labeling and Consumer Protection Act (want to read it? you can at http://www.foodallergy.org/Advocacy/FALCPAlaw.pdf). They are now directing their resources to the critical issue of the availability--or lack thereof--of gluten-free school lunches for children suffering from celiac. As we all know, celiac can be particularly devastating in children. It can have a lasting impact if left untreated. Yet many public schools--where our children spend an enormous percentage of their lives--have neither the awareness nor the resources to properly feed a child with celiac.
If you're interested in learning more about this issue, or--as I hope--in supporting the ACDA's efforts, just click on the link to their incredibly handy advocacy page.
Subscribe to:
Posts (Atom)
Posts
