An article in the NY Times online is headlined thusly: Really? Celiac Disease is Influenced by Season of Birth. It concludes, not surprisingly, that there are studies suggesting that the season of birth may influence incidence of celiac, though more research is needed. The article cites to three studies -- one recently published -- that have found a correlation between spring/ summer births and an increased incidence in celiac. One theory about the correlation is that typical introduction to gluten occurs around 6 months and, in babies born in spring or summer, that coincides with the winter and an increase in colds and flus. Another theory is that vitamin D exposure may play a role. I am clearly no scientist and these theories seemed truly odd to me -- how does it occur to someone to investigate this?? However, I am loving that studies are being conducted. It gives me hope that there may be some conclusions drawn during my lifetime. Perhaps even a way to prevent it.
Showing posts with label Health. Show all posts
Showing posts with label Health. Show all posts
Tuesday, October 30, 2012
Sunday, October 21, 2012
FDA Delays
Here's the timeline --
2004 -- Food Allergen Labeling and Consumer Protection Act passes, requiring FDA to propose within 2 years regulations defining "gluten-free" for purposes of food labeling and finalize those regulations within 4 years. (In case you hate math, that's 2006 for the proposal and 2008 for the final rule).
2007 -- FDA published a proposed rule to permit food manufacturers to label a food as "gluten-free" if, generally, it does not contain more than 20 ppm of gluten. The rule was published on Jan. 23, 2007, with a comment period ending April 23, 2007. (If you're not close to the regulatory process, a four month comment period is LONG).
2011 -- May. FDA publishes a study entitled Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease.
2011 -- August. FDA reopens the comment period on its previous rule proposal. In the accompanying press release, the FDA states that it wants up to date information prior to finalizing the rule. And cites to 2008 data. This time, the comment period stayed open for 60 days.
2012 -- October. Over a year later, no final rule has been adopted.
What we need here is a petition for rulemaking.
2004 -- Food Allergen Labeling and Consumer Protection Act passes, requiring FDA to propose within 2 years regulations defining "gluten-free" for purposes of food labeling and finalize those regulations within 4 years. (In case you hate math, that's 2006 for the proposal and 2008 for the final rule).
2007 -- FDA published a proposed rule to permit food manufacturers to label a food as "gluten-free" if, generally, it does not contain more than 20 ppm of gluten. The rule was published on Jan. 23, 2007, with a comment period ending April 23, 2007. (If you're not close to the regulatory process, a four month comment period is LONG).
2011 -- May. FDA publishes a study entitled Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease.
2011 -- August. FDA reopens the comment period on its previous rule proposal. In the accompanying press release, the FDA states that it wants up to date information prior to finalizing the rule. And cites to 2008 data. This time, the comment period stayed open for 60 days.
2012 -- October. Over a year later, no final rule has been adopted.
What we need here is a petition for rulemaking.
Thursday, April 22, 2010
Beyond Gluten-Free
Having celiac is nothing if not completely life-altering. Your history has an immediate schism: pre-GF and GF. Memories are altered with the overlay of new information (oh, my ability to eat anything and actually lose weight is not a good thing?) Moreover, every new experience is colored with the shade of celiac. Immediately, grocery shopping is medicinal. There are explanations for inexplicable ailments. You aren't the crazy, hysterical hypochondriac.
I have found that, contrary to popular current opinion, managing the disease involves a holistic approach. Yes, you must eat gluten-free. You also, though, may have to change your make-up. You may need to treat the inevitable symptoms that come from having lived with untreated celiac for a long period of time. You also need to be aware that not everything in your life relates back to the disease. It is possible that you really just have a stomach ache. Or that the extreme exhaustion you are feeling is from your toddler being up all night instead of inadvertent glutening.
In that regard, it is useful to have an arsenal of resources to supplement your physician in treating the total life experience of having celiac. Eastern medicine--specifically, acupuncture and massage therapy--can be particularly helpful in relieving stress, counteracting headaches and just basic life management. There are infinite levels of ability, costs and venue available in DC. Unlike some things in life, however, cost does not necessarily correlate to ability. You can get a terrible massage at a fancy spa. You can pay a ton for acupuncture that is perfunctory and impersonal. Alternatively, you could check out my favorites.
For massage: Eye Street Massage. They aren't fancy. In fact, as you hike up the four flights of stairs in the dingy building, I can almost guarantee you'll be skeptical. But I've found that they are universally very good. I particularly like Dee and Pam.
For acupuncture: Pekoe Acupuncture. Whenever I get glutened, I get a migraine. It's a clear, direct correlative event. It sucks. Nicole Mires has helped me through some of my worst. To be honest, I don't go with any regularity (which I understand is how you get the most benefit). Nonetheless, I have found it to be really effective in managing pain.
I have found that, contrary to popular current opinion, managing the disease involves a holistic approach. Yes, you must eat gluten-free. You also, though, may have to change your make-up. You may need to treat the inevitable symptoms that come from having lived with untreated celiac for a long period of time. You also need to be aware that not everything in your life relates back to the disease. It is possible that you really just have a stomach ache. Or that the extreme exhaustion you are feeling is from your toddler being up all night instead of inadvertent glutening.
In that regard, it is useful to have an arsenal of resources to supplement your physician in treating the total life experience of having celiac. Eastern medicine--specifically, acupuncture and massage therapy--can be particularly helpful in relieving stress, counteracting headaches and just basic life management. There are infinite levels of ability, costs and venue available in DC. Unlike some things in life, however, cost does not necessarily correlate to ability. You can get a terrible massage at a fancy spa. You can pay a ton for acupuncture that is perfunctory and impersonal. Alternatively, you could check out my favorites.
For massage: Eye Street Massage. They aren't fancy. In fact, as you hike up the four flights of stairs in the dingy building, I can almost guarantee you'll be skeptical. But I've found that they are universally very good. I particularly like Dee and Pam.
For acupuncture: Pekoe Acupuncture. Whenever I get glutened, I get a migraine. It's a clear, direct correlative event. It sucks. Nicole Mires has helped me through some of my worst. To be honest, I don't go with any regularity (which I understand is how you get the most benefit). Nonetheless, I have found it to be really effective in managing pain.
Tuesday, April 20, 2010
From My Dad--With Love
Celiac runs in families. My mom, for example, got it from me. At least, I was diagnosed and insisted everyone else get tested--hers came up positive. My dad, who discovered an abiding love of cooking in recent years, stepped up to his two-fold challenge; learn to cook gluten-free and do it in a tiny, northern Maine town with limited resources.
I love when he comes to visit in DC for many reasons, but certainly one of them is that he enjoys cooking, knows how to cook gluten-free and he's like a kid let loose in a candy store in our bountiful DC grocery stores. Every time he comes down, our standard of eating rises. On one of his recent trips, it was a cold, rainy day calling for soup. He made us the most incredible soup. After much prodding, I got him to write it down. He's been asking me to send it to him and, frankly, I think other celiacs could benefit from it, too. I make it whenever I'm sick (which has been frequent lately).
Thai Style Chicken Soup (from my dad's recipe)
1 package extra firm tofu--drained, pressed & cubed
2 cloves of garlic - minced (I usually use three or four. And I don't believe my father has ever made anything with less than 5 cloves of garlic)
1 in. ginger - minced
1 chicken breast - cubed
3-4 cups chicken broth
red pepper cut into strips
1/4 -1/2 fresh red chili peppers
1 cup julienned carrots
1-2 cups fresh baby spinach - chopped
salt and pepper to taste
2-4 tablespoons of extra virgin olive oil
cilantro for garnish
Heat the oil in a wok, fry tofu until crispy (this requires a lot of patience--leave it longer than you might want). Remove the tofu and drain it on some paper towel. Add cubed chicken to remaining oil and cook, stirring frequently until no longer pink. Add the garlic and ginger. Stir for a couple minutes. Add carrots and red pepper, stir frying for 2-3 minutes. Add the spinach, stir frying until wilted. Add the chicken broth. Bring it to a boil and add tofu. Add the chili pepper and simmer for 5-10 minutes. Salt and pepper to taste, adding spring onions and cilantro as wanted.
I love when he comes to visit in DC for many reasons, but certainly one of them is that he enjoys cooking, knows how to cook gluten-free and he's like a kid let loose in a candy store in our bountiful DC grocery stores. Every time he comes down, our standard of eating rises. On one of his recent trips, it was a cold, rainy day calling for soup. He made us the most incredible soup. After much prodding, I got him to write it down. He's been asking me to send it to him and, frankly, I think other celiacs could benefit from it, too. I make it whenever I'm sick (which has been frequent lately).
Thai Style Chicken Soup (from my dad's recipe)
1 package extra firm tofu--drained, pressed & cubed
2 cloves of garlic - minced (I usually use three or four. And I don't believe my father has ever made anything with less than 5 cloves of garlic)
1 in. ginger - minced
1 chicken breast - cubed
3-4 cups chicken broth
red pepper cut into strips
1/4 -1/2 fresh red chili peppers
1 cup julienned carrots
1-2 cups fresh baby spinach - chopped
salt and pepper to taste
2-4 tablespoons of extra virgin olive oil
cilantro for garnish
Heat the oil in a wok, fry tofu until crispy (this requires a lot of patience--leave it longer than you might want). Remove the tofu and drain it on some paper towel. Add cubed chicken to remaining oil and cook, stirring frequently until no longer pink. Add the garlic and ginger. Stir for a couple minutes. Add carrots and red pepper, stir frying for 2-3 minutes. Add the spinach, stir frying until wilted. Add the chicken broth. Bring it to a boil and add tofu. Add the chili pepper and simmer for 5-10 minutes. Salt and pepper to taste, adding spring onions and cilantro as wanted.
Monday, April 19, 2010
F&*K*#&$!!!
Damn you people on the train, with your germs and your sneezing and your failure to cover your mouth! Ok, so maybe its not the best idea to lick the poles on the metro (my toddler, not me). Lesson learned. Thank you. Again, my household has been struck down.
For the first day, I thought it was allergies. Really, really bad allergies. But no. Is it just me or do celiacs get sick all the time? I guess it makes sense, right? Compromised immune system and all? I actually thought that once you were on the diet and no longer testing positive, you were "normal". This does not seem to be the case. I think, in the last three months, I've been sick--with a cold, flu, etc.--at least three times. That's a LOT! And I'm not a good sick person. I'm whiny, pathetic, irritable, cranky. (When I'm sick!)
The icing on the cake is that, while food is increasingly labelled gluten-free, medication is not. Apparently, there are proprietary issues; pharmaceutical companies have resisted any attempts to require allergen labeling because they fear that their super-secret formulas will be stolen. Somehow. From the indication that it has wheat in it. Because the presence of wheat is clearly the missing link. Anyway. Suffice it to say, it can be tricky to determine whether a medication has gluten in it.
Take Zyrtec, for example (I thought I had allergies). Google it. Some sites say "zyrtec has gluten." Others claim that calls to the company have assured them that the medication is safe. Still others suggest that some dosages are fine, while others are dangerous. Calls to the company--typically the go-to measure of last resort--were, frankly, no more helpful. I got transferred around.
I don't have a great suggestion here. I'm worn down. Really, I don't understand the logic behind not mandating the drug companies label the presence of common allergens. I'm sure I'm overly cynical, but I have a fair certainty that effective lobbying has played a role. What can you do to fight that?
Meanwhile, it's late. I'm sick. I need to go to bed.
For the first day, I thought it was allergies. Really, really bad allergies. But no. Is it just me or do celiacs get sick all the time? I guess it makes sense, right? Compromised immune system and all? I actually thought that once you were on the diet and no longer testing positive, you were "normal". This does not seem to be the case. I think, in the last three months, I've been sick--with a cold, flu, etc.--at least three times. That's a LOT! And I'm not a good sick person. I'm whiny, pathetic, irritable, cranky. (When I'm sick!)
The icing on the cake is that, while food is increasingly labelled gluten-free, medication is not. Apparently, there are proprietary issues; pharmaceutical companies have resisted any attempts to require allergen labeling because they fear that their super-secret formulas will be stolen. Somehow. From the indication that it has wheat in it. Because the presence of wheat is clearly the missing link. Anyway. Suffice it to say, it can be tricky to determine whether a medication has gluten in it.
Take Zyrtec, for example (I thought I had allergies). Google it. Some sites say "zyrtec has gluten." Others claim that calls to the company have assured them that the medication is safe. Still others suggest that some dosages are fine, while others are dangerous. Calls to the company--typically the go-to measure of last resort--were, frankly, no more helpful. I got transferred around.
I don't have a great suggestion here. I'm worn down. Really, I don't understand the logic behind not mandating the drug companies label the presence of common allergens. I'm sure I'm overly cynical, but I have a fair certainty that effective lobbying has played a role. What can you do to fight that?
Meanwhile, it's late. I'm sick. I need to go to bed.
Wednesday, April 7, 2010
Think Twice About The Tea Parties
The health care bill has passed. For that matter, the health care bill passed, was effectively castrated, and passed again. There are uproars and...tea parties. The ironically named "tea parties" (for who can imagine something so completely counter to the conservative, polite discourse that occurs at most tea parties?) are being held in protest.
To what? Well, to be honest, I am not entirely sure. Taxes increasing to pay for it? (Do they all live in DC where you really do have taxation without representation?) Illegal immigrants with no current coverage will suddenly have access to doctors, thus decreasing the availability of those doctors for citizens? (No, seriously, I heard that one. The lack of basic humanity that must exist to say something so egregious with a straight face...) I do, however, know one thing for certain: there are at least 1 out of approximately every 133 people in the U.S. who should be thanking whatever higher power they believe in that this health care reform has passed. That's right, celiacs. I'm talking to you.
Health insurance companies used to be able to refuse to cover pre-existing conditions if an insured had allowed their previous insurance to lapse for any significant amount of time. Now, there is a provision in the law that disallows insurance companies from refusing coverage for pre-existing conditions.
Celiac disease "presents" with a myriad of symptoms and its impact--if untreated--can be catastrophic on several systems. Anything from gas to severe depression can be clinically linked to celiac. It has been shown to lead to other autoimmune diseases and even cancers. Make no mistake, it is a serious disease. And it has been gaining in prevalence and diagnosis. Presumably, health insurance companies are becoming aware of its far reaching tentacles.
Now imagine--under the old health insurance regime--that you lose your job and your insurance. Your cobra coverage expires. Six months later, you get a new job and--thankfully--new insurance. You fill out the paperwork, noting the existence of celiac. To the extent you think about it, you think that your celiac is being treated as much as is possible by your adherence to a gluten-free diet. But wait. You're having some difficulty dealing with the financial stress of being out of a job for so long. You want to see a doctor for depression, but your coverage is denied: depression is a symptom of celiac, a pre-existing condition. Your back is hurting. You want to get chiropractic treatment, but your coverage is denied: back pain is a symptom of celiac, your pre-existing condition. You break your arm and the doctors discover you have osteoporosis. Coverage for the treatment is denied: brittle bones are a side-effect of celiac, the condition that has effectively eliminated any security you may have felt from having insurance.
This concern, which I became aware of when my husband recently switched jobs, no longer exists. While the above are all hypothetical--I am as yet unaware of any real instance where someone was denied coverage for a celiac disease related incident--it is not difficult to imagine that the industry that denied insurance to a fat baby would make those not-so-attenuated arguments.
So. For all of you celiacs out there...avoid the Tea Parties. I don't think they can accommodate a gluten-free diet.
To what? Well, to be honest, I am not entirely sure. Taxes increasing to pay for it? (Do they all live in DC where you really do have taxation without representation?) Illegal immigrants with no current coverage will suddenly have access to doctors, thus decreasing the availability of those doctors for citizens? (No, seriously, I heard that one. The lack of basic humanity that must exist to say something so egregious with a straight face...) I do, however, know one thing for certain: there are at least 1 out of approximately every 133 people in the U.S. who should be thanking whatever higher power they believe in that this health care reform has passed. That's right, celiacs. I'm talking to you.
Health insurance companies used to be able to refuse to cover pre-existing conditions if an insured had allowed their previous insurance to lapse for any significant amount of time. Now, there is a provision in the law that disallows insurance companies from refusing coverage for pre-existing conditions.
Celiac disease "presents" with a myriad of symptoms and its impact--if untreated--can be catastrophic on several systems. Anything from gas to severe depression can be clinically linked to celiac. It has been shown to lead to other autoimmune diseases and even cancers. Make no mistake, it is a serious disease. And it has been gaining in prevalence and diagnosis. Presumably, health insurance companies are becoming aware of its far reaching tentacles.
Now imagine--under the old health insurance regime--that you lose your job and your insurance. Your cobra coverage expires. Six months later, you get a new job and--thankfully--new insurance. You fill out the paperwork, noting the existence of celiac. To the extent you think about it, you think that your celiac is being treated as much as is possible by your adherence to a gluten-free diet. But wait. You're having some difficulty dealing with the financial stress of being out of a job for so long. You want to see a doctor for depression, but your coverage is denied: depression is a symptom of celiac, a pre-existing condition. Your back is hurting. You want to get chiropractic treatment, but your coverage is denied: back pain is a symptom of celiac, your pre-existing condition. You break your arm and the doctors discover you have osteoporosis. Coverage for the treatment is denied: brittle bones are a side-effect of celiac, the condition that has effectively eliminated any security you may have felt from having insurance.
This concern, which I became aware of when my husband recently switched jobs, no longer exists. While the above are all hypothetical--I am as yet unaware of any real instance where someone was denied coverage for a celiac disease related incident--it is not difficult to imagine that the industry that denied insurance to a fat baby would make those not-so-attenuated arguments.
So. For all of you celiacs out there...avoid the Tea Parties. I don't think they can accommodate a gluten-free diet.
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
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.
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