Here is an excellent article from Columbia University.
Some quick stats: 1 in 100 people in the US have CD. 97 of those people don't know they have it. Only 1 in 6 people who have CD have typical gastrointestinal symptoms. Many are completely asymptomatic. Untreated CD can lead to cancer, diabetes, and a host of other autoimmune diseases. 80% of medical research in the US is done by drug companies and because CD is treated without drugs there is very little attention given to the disease. Most physicians receive their continuing education from drug reps. Physicians taught in the US are still taught that CD is a rare disease of childhood.
Showing posts with label Rants. Show all posts
Showing posts with label Rants. Show all posts
Friday, January 8, 2010
Sunday, October 18, 2009
Celiac Disease: It's More Than Just The Trots
Let's say that someone in your family had a history of breast or testicular cancer. Then one morning you are in the shower and you feel a lump in your breast or testicle. What would you do? Would you go see your doctor to be evaluated? Of course you would, right?! You wouldn't sit at home and try to ignore the lump. You wouldn't say, "my breast/teste is too important to me so I don't want to find out what this lump is because that may mean losing it." That could possibly be suicidal, right? Well, Celiac Disease is no different. Untreated Celiac Disease can cause conditions that can be fatal. It should not be ignored. Good nutrition is the basis of health and Celiac Disease prevents good nutrition. In CD, even minute amounts of gluten (which is found in more than just "flour") will destroy your small intestine. It will cause damage even if you are not having symptoms. Your small intestine is where all the vitamins, minerals, protein, etc is absorbed. They are absorbed by tiny little finger like projections called villi. Celiac Disease flattens and destroys those villi making it impossible to absorb the nutrition you need to stay healthy and fight disease. Gluten will eventually cause disease, debility and yes, even death in a person with CD. CD is an auto immune disease. It is not an allergy, a sensitivity or an intolerance. It needs to be taken as seriously as cancer. It is more than just the inconvenience of a few extra trips to the bathroom.
I talked to a woman a couple of weeks ago and she was saying that her friend has a daughter with CD. "But she (the young girl) has so many other health issues that (the mother) just lets it (the CD) go." She said that the diet was just too hard and the child's symptoms weren't that bad so they just don't worry about it. I could not believe what I was hearing. Clearly it isn't completely the mothers fault that there is a Grand Canyon's worth of education missing in this family. That mother has no idea that most, if not all, of the child's other issues are a result of her Celiac Disease and just because she wasn't having diarrhea did not mean that it wasn't an enormous problem. The woman told me that this poor little kid has crippling Rheumatoid Arthritis. It is so bad she can't even walk up stairs. It is heartbreaking to me that the mother doesn't know that RA is also an autoimmune disease and that it was likely triggered by untreated CD. Why didn't the girl's doctor educate the mother? Maybe it was because he didn't know. When my husband was diagnosed they weren't looking for CD so we had no idea what was coming. We were completely unprepared. The day he got that diagnosis the doctor handed him his biopsy results and said "you need to go on a gluten free diet, permanently." That was it. No further education. Done. He just got instructions to follow up for another biopsy in one year. When my friend was diagnosed this March, her GI doctor told her that "at least you can still have Mexican food." (I can't even count the number of ways that this is wrong.) Again, no education, no referral to someone who could educate.
The newest research says that 1 in 100 people have CD and that if you have a blood relative that has CD, you have a 1 in 22 chance of having it. Mark my words here and now: those numbers are inaccurate and the true number is much, much higher. Of all the people I know that have CD, they are not the only one in their family who has it. If you have a family member that has CD you NEED to be screened. Saying that the diet is just too difficult or you don't have the time to do it or that you love your bread or pasta or whatever too much, isn't a good enough reason to not get screened. You need to ask your doctor to have the appropriate blood work done. If he/she refuses then find another doctor. Some doctors still believe that CD is rare. You need to be screened even if you don't have diarrhea. Some people have constipation. Some people have both and some people don't have a single symptom and do not feel sick. That doesn't mean that they don't have the disease or that the gluten that they are ingesting is not damaging their body. It may just mean they don't have symptoms yet. When you do get your blood drawn keep in mind that a negative result does not mean that you don't have CD and are free and clear forever. It just means that you don't have enough antibodies in your blood on that day. That could change in a month or a year or never. The point is, you won't know if you aren't screened. There is a grey area or continuum in CD diagnosis, meaning that there is a period of time from when the disease starts to when antibodies can be detected in your blood. That period of time is different for everyone. So, if you have symptoms or if you have a family member who has it, you should be screened regularly. If you have any autoimmune diseases (Type 1 diabetes, Arthritis, thyroid disorders etc) know that autoimmune diseases tend to come in groups. Meaning, if you have one you are at greater risk to have another.
I wonder about the number of kids that are on the autism spectrum (Aspergers, ADD, ADHD etc). There was a recent study just released about about the incidence of autism. Turns out it is much more prevalent that previously thought. I bring this up because I am absolutely positive that had we not had the diagnosis for my husband; my oldest daughter would be diagnosed with ADHD. When she ingests gluten she has more behavioral symptoms than GI (although she does have those too depending on dose). She gets hyperactive, defiant, belligerent, aggressive, angry, sad and volatile. It is horrible to see and our hearts break for her when this happens. I wonder if we would ever have gotten a diagnosis of CD if it weren't for her daddy's diagnosis since she doesn't present with "typical" symptoms. Prior to eliminating gluten from her diet her only other symptom aside from the behavioral stuff was that she was small.
The previous mentioned friend had both her daughters tested and one was positive. Other than just being small, she had no symptoms. My friend encouraged her family to get tested. They did. Both her father and her only other sibling both have it. Now, I am no statistician but that does not work out to 1 in 22. It's the same in my immediate family. 2 of our 3 kids have it. There are many in my husbands family that likely have it too. His mother and her father, though not diagnosed, in retrospect likely had it too. They both died in nursing homes with atypical Alzheimer dementia with a long history of bowel issues and depression. My husband is one of seven children. One other has an "assumed celiac" diagnosis and others report symptoms but have not yet been screened. That's not 1 in 22 either. That is only a few examples of many I could site.
Here is a list of possible symptoms of CD. Here is a list of conditions that are associated with CD. Here is a list of conditions that are probably associated with CD. Yes, it's a huge list and like I said, some people have no symptoms at all because the damage has just started. Don't wait until you have a laundry list of those ailments and don't wait until you have cancer. If you have a family member who has CD you must be screened and your children must be screened. Screen now and screen often. And pass on the message!
****If you are the owner of a gluten free / Celiac blog, please consider linking this post to your blog to help spread the message. Help me to increase Celiac awareness. Thanks****
I talked to a woman a couple of weeks ago and she was saying that her friend has a daughter with CD. "But she (the young girl) has so many other health issues that (the mother) just lets it (the CD) go." She said that the diet was just too hard and the child's symptoms weren't that bad so they just don't worry about it. I could not believe what I was hearing. Clearly it isn't completely the mothers fault that there is a Grand Canyon's worth of education missing in this family. That mother has no idea that most, if not all, of the child's other issues are a result of her Celiac Disease and just because she wasn't having diarrhea did not mean that it wasn't an enormous problem. The woman told me that this poor little kid has crippling Rheumatoid Arthritis. It is so bad she can't even walk up stairs. It is heartbreaking to me that the mother doesn't know that RA is also an autoimmune disease and that it was likely triggered by untreated CD. Why didn't the girl's doctor educate the mother? Maybe it was because he didn't know. When my husband was diagnosed they weren't looking for CD so we had no idea what was coming. We were completely unprepared. The day he got that diagnosis the doctor handed him his biopsy results and said "you need to go on a gluten free diet, permanently." That was it. No further education. Done. He just got instructions to follow up for another biopsy in one year. When my friend was diagnosed this March, her GI doctor told her that "at least you can still have Mexican food." (I can't even count the number of ways that this is wrong.) Again, no education, no referral to someone who could educate.
The newest research says that 1 in 100 people have CD and that if you have a blood relative that has CD, you have a 1 in 22 chance of having it. Mark my words here and now: those numbers are inaccurate and the true number is much, much higher. Of all the people I know that have CD, they are not the only one in their family who has it. If you have a family member that has CD you NEED to be screened. Saying that the diet is just too difficult or you don't have the time to do it or that you love your bread or pasta or whatever too much, isn't a good enough reason to not get screened. You need to ask your doctor to have the appropriate blood work done. If he/she refuses then find another doctor. Some doctors still believe that CD is rare. You need to be screened even if you don't have diarrhea. Some people have constipation. Some people have both and some people don't have a single symptom and do not feel sick. That doesn't mean that they don't have the disease or that the gluten that they are ingesting is not damaging their body. It may just mean they don't have symptoms yet. When you do get your blood drawn keep in mind that a negative result does not mean that you don't have CD and are free and clear forever. It just means that you don't have enough antibodies in your blood on that day. That could change in a month or a year or never. The point is, you won't know if you aren't screened. There is a grey area or continuum in CD diagnosis, meaning that there is a period of time from when the disease starts to when antibodies can be detected in your blood. That period of time is different for everyone. So, if you have symptoms or if you have a family member who has it, you should be screened regularly. If you have any autoimmune diseases (Type 1 diabetes, Arthritis, thyroid disorders etc) know that autoimmune diseases tend to come in groups. Meaning, if you have one you are at greater risk to have another.
I wonder about the number of kids that are on the autism spectrum (Aspergers, ADD, ADHD etc). There was a recent study just released about about the incidence of autism. Turns out it is much more prevalent that previously thought. I bring this up because I am absolutely positive that had we not had the diagnosis for my husband; my oldest daughter would be diagnosed with ADHD. When she ingests gluten she has more behavioral symptoms than GI (although she does have those too depending on dose). She gets hyperactive, defiant, belligerent, aggressive, angry, sad and volatile. It is horrible to see and our hearts break for her when this happens. I wonder if we would ever have gotten a diagnosis of CD if it weren't for her daddy's diagnosis since she doesn't present with "typical" symptoms. Prior to eliminating gluten from her diet her only other symptom aside from the behavioral stuff was that she was small.
The previous mentioned friend had both her daughters tested and one was positive. Other than just being small, she had no symptoms. My friend encouraged her family to get tested. They did. Both her father and her only other sibling both have it. Now, I am no statistician but that does not work out to 1 in 22. It's the same in my immediate family. 2 of our 3 kids have it. There are many in my husbands family that likely have it too. His mother and her father, though not diagnosed, in retrospect likely had it too. They both died in nursing homes with atypical Alzheimer dementia with a long history of bowel issues and depression. My husband is one of seven children. One other has an "assumed celiac" diagnosis and others report symptoms but have not yet been screened. That's not 1 in 22 either. That is only a few examples of many I could site.
Here is a list of possible symptoms of CD. Here is a list of conditions that are associated with CD. Here is a list of conditions that are probably associated with CD. Yes, it's a huge list and like I said, some people have no symptoms at all because the damage has just started. Don't wait until you have a laundry list of those ailments and don't wait until you have cancer. If you have a family member who has CD you must be screened and your children must be screened. Screen now and screen often. And pass on the message!
****If you are the owner of a gluten free / Celiac blog, please consider linking this post to your blog to help spread the message. Help me to increase Celiac awareness. Thanks****
Sunday, June 7, 2009
Nutrition and Behavior - Video
This video is fascinating. Definitely worth the time to watch. It talks about the effects of diet on brain function. Dr. Blaylock has summarized a ton of studies in this presentation. It really is making me look at food in a different way. Please take the time to watch and let me know what you think.
http://dprogram.net/2009/01/27/videodr-russell-blaylock-nutrition-and-behavior-aspartame-msg/
http://dprogram.net/2009/01/27/videodr-russell-blaylock-nutrition-and-behavior-aspartame-msg/
Saturday, January 24, 2009
Ditching TV Among Other Things
In the last week of December Ron and I made a decision to discontinue our satellite service. This is something that I have been wanting to do for some time and I had suggested it more than once. But like most North Amercians, we are a teeny bit addicted to TV so Ron nixed the idea. I let it go. Then in the beginning of December it became his idea. Then of course it turned into a great idea. I was fully supportive of "his" idea but really didn't think he would do it. First he started with the TVs. We had an embarrassing 6 flat screen TVs. One in nearly every room and even in the kids rooms (which we had always said we wouldn't do). He started selling them off on Craigslist. I love Craigslist. Soon enough we had just one left. The he cancelled the satellite service. I was stunned and more than a little impressed. First he kicks gluten without even a flinch, then dairy, then aspartame, then TV and now he is working on soda in general. Since he has no other "real" vices he is on a fast track to becoming perfect. So you might be asking yourself, why would we do this? No, we're not starving or having trouble paying the bills. This is really all just a part of a bigger picture. There is a lot to gain by ditching TV. First, the most obvious, is the cash you dish out every month for 7000 stations (and none of them are worth your time). Then there are the countless hours you can reclaim that can go to important things, like your family. We find we are spending more time as a family. We are playing games together, reading, making things, building things, going for walks, cooking, hanging out outside etc. Ron and I are talking more. Ron has started reading again. Him and I are both getting more sleep. Both of us had the habit of turning on the TV when we are tired to "just watch a couple of minutes." Hours later we are still staring blankly at the TV. Then we wake up tired the next day and our patience is short with the kids and sometimes with each other. Then we'd miserable and lazy and only want to, guess what's coming... watch TV. The TV was on in the background all the time whether or not anyone was watching. Since it has been off there is a beautiful calm in the house. I am enjoying the lack of the constant din. The girls are more often playing with each other. They are pretending, creating, learning and running. None of those things are done in front of the TV. We are spending more time outside and our attention is more fully on the present moment. How many times have I wished that the kids would just be quiet for a bit so I could hear or see something on the TV... TV is an escape, a drug, a diversion. I don't want to be diverted from my life. I want to live it. At the end of our lives, will we look back and think "wow, I remeber that one TV show...."? We want our kids to have great memories of the time we spent together. Memories aren't made waching TV. Life is so short and I want to be present for all of it. I don't want to waste my precious time being told how I should look or what I should want (also why I don't buy magazines anymore). I really don't care what the Hollywood stars are doing, saying or wearing. I love the fact that my kids have no idea what a BRATZ doll is or who Hannah Montana is or what High School Musical is. I love that they adored the castle that Ron made for them at Christmas and that it wasn't MADE IN CHINA or made from plastic. As I get older I find myself deploring the consumerism that defines American life. Everything is disposable, everything is about appearances and having the right car, handbag, hairstyle, jewelry, cell phone, clothing, body shape and bra size. I think that we have all lost sight of what really matters. Have have have get get get buy buy buy does not make us happier. Maybe it feels good for a minute but why? Because we have one upped the Jones', or because we are one step closer to looking just so? In the last few months we have tried to reverse our years of that mindset of having and getting. We are constantly selling stuff we don't use or need. Our entire focus is probably the exact opposite of most people here in Scottsdale. And you know what? It feels good. Really really good. We aren't just selling stuff but we are giving stuff away too. I have discovered freecycle. This is an online group (probably one near you) that is all about the giving and receiving of free stuff in an effort to keep things out of the landfills a while longer. Right before Christmas we went through the kids toys and gave away everything that they didn't use regularly. The whole lot of it went to a foster mom of 3 girls for their Christmas gifts. Even Sage felt good about that. So, to those of our friends and family who know about us ditching our TVs and selling all of our stuff: No, we are not starving or even having financial difficulties we are just trying to make the most of our lives.
Okay, I will step down from my soap box now.
Okay, I will step down from my soap box now.
Sunday, November 9, 2008
Aspartame
Okay, since I am at it anyway, sleep can wait a couple minutes more.
Ron has been a huge consumer of diet sodas since he was a teen. By huge I mean everyday, sometimes a couple liters worth. I have bugged him about it so much he was just tuning me out. Then we watched the documentary "Sweet Misery". (I LOVE the documentary channel.) Since then, he (we) have completely stopped. Here is another one worth watching.
Okay, to bed now. I am so tired with Justus waking every hour or two it is likely that I won't even remember writing this in the morning.
Ron has been a huge consumer of diet sodas since he was a teen. By huge I mean everyday, sometimes a couple liters worth. I have bugged him about it so much he was just tuning me out. Then we watched the documentary "Sweet Misery". (I LOVE the documentary channel.) Since then, he (we) have completely stopped. Here is another one worth watching.
Okay, to bed now. I am so tired with Justus waking every hour or two it is likely that I won't even remember writing this in the morning.
Milk is Evil
I have been thinking in the last year that milk is evil and that it is really no good for anyone. I know that sounds really crazy to many people but it does make sense. Humans are the only mammals to consume the milk of another animal. When you think about it that way it sounds kind of gross doesn't it? I am not saying I don't like it myself, I do. I like it in all forms and it has been really difficult for me to avoid it entirely while I have been breastfeeding but I do, usually. Actually, it is really hard to avoid. It is in EVERYTHING. It is way easier to avoid gluten than it is to avoid dairy. (Try both simultaneously!) I grew up thinking that milk was necessary in your diet to get enough calcium. Turns out that isn't the case. I was allergic to dairy as a baby, my mom tells me and I was slow to gain weight. When switched to soy formula I gained weight quickly. But after that for who knows why my doctor told my mom to go back to cows milk formula. Anyway, as an adult I thought I was not allergic anymore. Then I had to cut it out of my diet 100% while nursing Rori. Then when she weened I started eating it again. That was when I noticed issues with it. Terrible stomach pains when I had it. Did that deter me? No. Of course not. The pain eventually went away. Now in hindsight I know that Sage was sensitive to it too. What I didn't know back then was that in order to see if your breastfed baby is sensitive to it you need to eliminate it from your diet 100% for about 2 weeks. It can stay in your breast milk and in your body for that long. Now nursing Justus I figured it out right from the very start. In my personal opinion colic = milk sensitivity. Since then I have read about many different symptoms of milk sensitivity that range from the expected "big D" (diarrhea) to anxiety, cough, depression and insomnia. Since all 5 of us in this house have some kind of issue with dairy it has led me to believe that dairy is evil. Then I came upon a documentary called "White Mischief". Now I feel vindicated. If you have some time (45 minutes) please check this out. It is well worth your time.
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