Timmy is young enough that he doesn't really miss gluten things. Connor, on the other hand, was a solid mac n cheese, bread, pancake, cookie loving little guy. I didn't feed him much of the sweets at all before, but I'm afraid to say Annie's organic mac n cheese and sandwiches were a lunch staple in our house. I already fought enough for him to eat chicken and veggies and fruit for dinner...I hated fighting about lunch too. So I started incorporating some sneaky nutrition fixes where I can, and I feel like I can really relax and let them enjoy what they like without fretting too much about whether they're getting all the vitamins and minerals they need to be truly well.
Some of the things I've done are straight out of "Sneaky Chef" by Missy Lapine, some from "Deceptively Delicious" by Jessica Seinfeld and some from the "Nutrition Book" by the Sears family. Others I've concocted on my own but work well. Keep in mind some of the things in these books will need to be adapted heavily -- Lapine in particular loves her some wheat germ, which is a definite no-no for gf kids. She also depends a lot on milk, bread and pasta as kid friendly vehicles for sneaky stuff, so it's not easy to adapt some things. A few things that DID work for me though...
- I started putting 1/4 cup of pureed pumpkin, yam and carrots into their Annie's Gluten Free Mac N Cheese. Connor actually ate MORE with this in it. Miraculous. It makes it sweeter and richer tasting, as well as making it a deep orange color that is more appealing.
- Added avocado to homemade chocolate pudding. I put in a half...might cut that a bit next time because it did have a slight aftertaste.
- Added Tbsp of pureed pumpkin to grilled cheese. No kidding, smear it on the gf bread making sure to cover it with cheese, the kids will snarf it like it's going out of style.
- Made strong raspberry juice concentrate to add to cold water...a Tbsp flavors it nicely with very little sugar. You could do this with nearly any fruit...I just cook down two cups with two cups of water, boil for 10 mins and voila! Some fruits do better with a little lemon added. For kids who can tolerate milk, raspberry and blueberry juice is absolutely ideal to add to "chocolate" milk. I put in a Tbsp of juice and less than a tsp of chocolate and it tastes richer and is a deeper chocolatey color with 1/5 the sugar.
- I add pumpkin, sweet potato and carrots to everything. Waffles, pancakes, muffins, tomato sauce. Rich in vitamin A and lycopene as well as vitamin E. So important for healing children!
- I'm using purees to replace half the fat in recipes where fat is not critical to the success of the recipe...for example, you can easily replace most of the fat in brownies with pureed blueberries. I put 1/2 cup of applesauce to replace half the butter in chocolate chip cookies.
- I buy one 64 oz jar of 100% fruit juice. I usually water that down to 1 oz of juice to 8 oz of water for Timmy, and 3 oz of juice to 6 oz of water for Connor. If you consequently buy fruit juice concentrate, you can mix it up in the 64 oz container and by filling it up to the top, you have already cut the juice in half with water (concentrates are usually 32 oz -37 oz). I then add a smidge more water for Connor; he's used to seeing me add water and always requests it, and has started rejecting undiluted juice boxes as too sweet.
A few guidelines I'm trying to stay with...
- Less than 40 g of added sugar. I don't count natural fruit sugars, just sucrose and doctored fructose. My personal demon is high fructose corn syrup so none of that. It horrifies me to my very soul that there is MORE than that in a single 12 oz can of root beer. The average person eats 153 lbs of sugar a year, or more than 1/2 cup a day (according to Duke University studies). And that's just sugar...if you add high fructose corn syrup and artificial sweeteners, people eat over 300 lbs of sweet stuff. No wonder type II diabetes is rampant. Besides, in cutting sugar myself, I'm finding that I enjoy other tastes more now that sweet isn't primarily what I'm after.
- Organic wherever possible. Tough to do up here with fruits outside of the summer months, but I belong to a local organic CSA for veggies. Sure makes a big difference to health and less impact on pocketbook.
- If I buy a treat, I look for real ingredients. I'd rather the boys have full fat ice cream with four real ingredients once a week than low fat ice cream with 30 "WTFO?" ingredients every day. Otherwise, if something is going to be doctored, I'll do it so I KNOW what's in it. Honestly, who knew polysorbate 80 is a standard low fat additive? What is polysorbate 80? Bad juju, my friend. I made my own chocolate frozen yogurt the other day with sugar, cornstarch, yogurt, cocoa and avocado. Pretty tasty and very healthy. Or a chocolate banana almond loaf sweetened with honey...high fat but it's good almond fat and extremely low sugar. Who knew dessert could have the same sugar content as a bran cereal? Or should I be shocked that the bran cereal has as much sugar as dessert? Accordingly, anything with sugar content over 15 g (again, exception is fruits and 100% juices) is treated as dessert.
- Sneak nutrition in but present healthy options still. Let kids pick what kind of fruit they want for dinner. I allow all fruit and veggies they want for snacks but rarely allow crackers or granola bars; those are saved for high calorie expenditure activities like bike riding or park time. We have things we call "sometimes treats." He asks for them a lot but knows that those are only for "sometimes." Shhh, even "sometimes" foods are doctored by mom -- my chocolate chip cookies have peanut butter and flax seed for vitamin E boost, applesauce to cut the fat and sugar, and almond meal in addition to garfava and brown rice flour to add healthy fat and fiber.
- I'm also trying to teach Connor about why he can't eat certain things but immediately have a tasty option to present when he has to forego something. I hated having to tell him no when the other kids enjoyed a cinnamon bun at the Art Festival but I whipped out mom's homemade cinnamon sugar gfcf corn chips and he happily munched those down, at a cost of 110 calories and only 4 g of sugar. Wonder how much those other kids ate...
- Connor gets to pick meals for dinner and help prepare them...this has gone a long way to making him at least try things...I get out books with pictures of the different food, he picks it and then helps me throw it in the pot to cook. He'll actually eat carrots and beans when he helps. I'm really pleased with how this is going, but we also get into food ruts when he discovers a favorite and mommy has to overrule his picking ham and peas over rice pasta for the fourth night in a row.
What are you doing to boost your family's health?
Showing posts with label celiac disease. Show all posts
Showing posts with label celiac disease. Show all posts
Friday, June 12, 2009
And then there were two...
We officially have another child with celiac disease. This is not a surprise...we were fully expecting the result we received, but were totally taken aback by the severity of Connor's celiac disease. The boys each have different genes, one each celiac and one each gluten sensitive, so Charlie and I obviously are double gened ourselves. I would never have guessed that Connor was as severe as he has proved to be, given that his symptoms were so much less dramatic than Timmy's. We took him off gluten almost a month ago, and we're not looking back.
He is HLA-DQ2 and DQ6 positive, which means that his particular brand of celiac disease is strongly associated with "brain fog", gluten ataxia, apraxia and aphasia. Since going off gluten 3.5 weeks ago, he has made more progress in his speech than in the previous year. He's using "-ing", actually using "is" and "the", possessives for people other than himself, and putting together sentences of increasing complexity. Speech has been our biggest worry with Connor -- he's been evaluated several times, and each time no one in the process could figure out why he didn't talk properly. At 30 months, he was testing at 18-20 months. At 36 months, he was testing at 20-24 months. Now he's matching markers for 36 months at almost 41 months, so he's done six months of catch up in less than a month. It's been nothing less than miraculous.
Other things that have dramatically improved...
- He's gained almost half an inch of height in a month, and one lb. Oddly enough, he's eating less though. His tests showed that he was actually absorbing less than 30% of what he was eating as opposed to 90-95% of a non celiac person. As a result, we suspect he has some nutritional deficiencies. Dr Fine and Dr Fasano estimated a full 6-12 months before his gut is fully healed and only then if he stay STRICTLY gluten free.
- Despite weight gain, he's actually had to have his pants tightened because belly swelling has gone down. I never particularly noticed he had a swollen tummy until it was gone.
- He's asking again for naps after quitting taking them for almost a year, and is sleeping at least 11 hrs at night as well. Considering that at 15 months he was getting up 8-10 times a night and kept that up until almost 3, this is damn near miraculous.
- He actually has healthy bathroom time. I won't share too much here, but he and I are both pleased with poop time! In the last few months before his diagnosis, he had been experiencing sudden unexplained uncontrolled diarrhea -- it even threatened his "Day Out with Thomas", it was so bad. We had to buy emergency underwear out on Baltimore harbor. And we took him to the Air and Space Museum in DC and had to go home because of a horrid series of accidents on the National Mall. Poor kid HATES having accidents, and he's had no episodes at all since going gluten free.
I am so glad that if the boys had to have this condition that Timmy was as dramatically sensitive as he is. He saved his brother a few years of pain, because I believe it would have taken me a much longer time to put together the puzzle from speech delay and some diarrhea. But I also believe that if I hadn't pushed so hard and been willing to depart from the military healthcare model, both children would be in much worse shape today. Celiac disease is a sneaky insidious disease that cripples people and shortens their lives; and unfortunately it is one of the most vastly underdiagnosed diseases in America today. It takes 11 years on average from onset of symptoms to find out what is wrong. That is about 11 years too long in my opinion, and all I can hope is that my sweet babies were caught in enough time to make sure that they will never feel the ill effects of unchecked CD.
I've jumped into gluten free baking and studying nutritional issues. For people interested in gluten intolerance, sensitivity, celiac disease, what have you...I strongly recommend "The Gluten Connection" by Sheri Lieberman. This book is revolutionary and ties many seemingly disconnected issues to include osteoporosis, fibromyalgia, weight gain, acid reflux, etc to gluten intolerance. You don't have to be full blown celiac like my children to really have gluten screw up your health.
I've take the kitchen completely gluten free. I bought some applications for gluten free shopping and cooking for my iPhone. I prepare and pack food for every outing. I've perfected a standard bread recipe, and found a kick ass chocolate cake recipe. I've read book after book about healing with food, and am sneaky chefing my butt off to get needed nutrients into the kids. I've got rid of the vast majority of prepared foods - not that we had many to begin with - but am hoping to take the whole family in the direction of organic fresh foods with a heavy emphasis on lean meat, vegetables, fruit and nuts with a smattering of whole grains like brown rice and quinoa. I joined a local organic community supported agriculture (CSA) and will be getting an amazing amount of fresh organic locally grown produce starting in a week or so. We are off of all artificial sweeteners and high fructose corn syrup is strictly verboten. I am strongly trying to avoid almost all food additives to include the polysorbate family and noxious food dyes. I'm seriously considering brewing my own kombucha. I bought a book about celiac disease for Connor and after an unfortunate shared cracker incident have repeatedly emphasized that he must check with mommy to find out if he's eating a "feel good" food. I've got plans in place for preschool, birthday parties, PCS, etc. I will be a gluten policeman until my kids can be responsible on their own for their own health.
I'm not saying any of this to be patted on the back, but just to show that this disease is totally manageable and practically nonexistent if it's actively pursued daily. And I am pursuing all these other health related changes because I think that the current American diet and food processing is seriously endangering our children's health -- the incidence of genetically modified foods, processing, celiac disease, diabetes, lupus, asthma, allergies and autism are all rising at roughly the same rate. That can't be entirely coincidental.
I'm going to follow up this post with some nutritional changes I'm making...we're doing a few incremental things (we're still eating too much pasta and bread IMO, but we're moving away from it...just to show what I'm trying to do. If people have any other ideas, I would love to hear them...
So...Connor has celiac disease. I gave him some extra hugs tonight, got "Wuv oo, mommy" and sigh...here we go, kiddo...let's make you well.
He is HLA-DQ2 and DQ6 positive, which means that his particular brand of celiac disease is strongly associated with "brain fog", gluten ataxia, apraxia and aphasia. Since going off gluten 3.5 weeks ago, he has made more progress in his speech than in the previous year. He's using "-ing", actually using "is" and "the", possessives for people other than himself, and putting together sentences of increasing complexity. Speech has been our biggest worry with Connor -- he's been evaluated several times, and each time no one in the process could figure out why he didn't talk properly. At 30 months, he was testing at 18-20 months. At 36 months, he was testing at 20-24 months. Now he's matching markers for 36 months at almost 41 months, so he's done six months of catch up in less than a month. It's been nothing less than miraculous.
Other things that have dramatically improved...
- He's gained almost half an inch of height in a month, and one lb. Oddly enough, he's eating less though. His tests showed that he was actually absorbing less than 30% of what he was eating as opposed to 90-95% of a non celiac person. As a result, we suspect he has some nutritional deficiencies. Dr Fine and Dr Fasano estimated a full 6-12 months before his gut is fully healed and only then if he stay STRICTLY gluten free.
- Despite weight gain, he's actually had to have his pants tightened because belly swelling has gone down. I never particularly noticed he had a swollen tummy until it was gone.
- He's asking again for naps after quitting taking them for almost a year, and is sleeping at least 11 hrs at night as well. Considering that at 15 months he was getting up 8-10 times a night and kept that up until almost 3, this is damn near miraculous.
- He actually has healthy bathroom time. I won't share too much here, but he and I are both pleased with poop time! In the last few months before his diagnosis, he had been experiencing sudden unexplained uncontrolled diarrhea -- it even threatened his "Day Out with Thomas", it was so bad. We had to buy emergency underwear out on Baltimore harbor. And we took him to the Air and Space Museum in DC and had to go home because of a horrid series of accidents on the National Mall. Poor kid HATES having accidents, and he's had no episodes at all since going gluten free.
I am so glad that if the boys had to have this condition that Timmy was as dramatically sensitive as he is. He saved his brother a few years of pain, because I believe it would have taken me a much longer time to put together the puzzle from speech delay and some diarrhea. But I also believe that if I hadn't pushed so hard and been willing to depart from the military healthcare model, both children would be in much worse shape today. Celiac disease is a sneaky insidious disease that cripples people and shortens their lives; and unfortunately it is one of the most vastly underdiagnosed diseases in America today. It takes 11 years on average from onset of symptoms to find out what is wrong. That is about 11 years too long in my opinion, and all I can hope is that my sweet babies were caught in enough time to make sure that they will never feel the ill effects of unchecked CD.
I've jumped into gluten free baking and studying nutritional issues. For people interested in gluten intolerance, sensitivity, celiac disease, what have you...I strongly recommend "The Gluten Connection" by Sheri Lieberman. This book is revolutionary and ties many seemingly disconnected issues to include osteoporosis, fibromyalgia, weight gain, acid reflux, etc to gluten intolerance. You don't have to be full blown celiac like my children to really have gluten screw up your health.
I've take the kitchen completely gluten free. I bought some applications for gluten free shopping and cooking for my iPhone. I prepare and pack food for every outing. I've perfected a standard bread recipe, and found a kick ass chocolate cake recipe. I've read book after book about healing with food, and am sneaky chefing my butt off to get needed nutrients into the kids. I've got rid of the vast majority of prepared foods - not that we had many to begin with - but am hoping to take the whole family in the direction of organic fresh foods with a heavy emphasis on lean meat, vegetables, fruit and nuts with a smattering of whole grains like brown rice and quinoa. I joined a local organic community supported agriculture (CSA) and will be getting an amazing amount of fresh organic locally grown produce starting in a week or so. We are off of all artificial sweeteners and high fructose corn syrup is strictly verboten. I am strongly trying to avoid almost all food additives to include the polysorbate family and noxious food dyes. I'm seriously considering brewing my own kombucha. I bought a book about celiac disease for Connor and after an unfortunate shared cracker incident have repeatedly emphasized that he must check with mommy to find out if he's eating a "feel good" food. I've got plans in place for preschool, birthday parties, PCS, etc. I will be a gluten policeman until my kids can be responsible on their own for their own health.
I'm not saying any of this to be patted on the back, but just to show that this disease is totally manageable and practically nonexistent if it's actively pursued daily. And I am pursuing all these other health related changes because I think that the current American diet and food processing is seriously endangering our children's health -- the incidence of genetically modified foods, processing, celiac disease, diabetes, lupus, asthma, allergies and autism are all rising at roughly the same rate. That can't be entirely coincidental.
I'm going to follow up this post with some nutritional changes I'm making...we're doing a few incremental things (we're still eating too much pasta and bread IMO, but we're moving away from it...just to show what I'm trying to do. If people have any other ideas, I would love to hear them...
So...Connor has celiac disease. I gave him some extra hugs tonight, got "Wuv oo, mommy" and sigh...here we go, kiddo...let's make you well.
Sunday, May 3, 2009
So...our baby boy has celiac disease
I have been holding off posting about our trials and travails with Timmy's health until we had definitive answers. Now that we have one -- celiac disease -- I can tell the story. Maybe someone else in my shoes will stumble across this and have an epiphany and maybe this will give family and friends a better understanding of what celiac disease entails.
Just short of 6 months, I decided to let Timmy experiment with food. Connor had lunged at my lentils at 5 months, 3 weeks...so why not let Timmy gnaw a teething biscuit while I fed Connor his breakfast? I got my answer a few hours later when Timmy was screaming in uncontrollable shrieking pain. He couldn't nurse; all he could do was draw his legs to his chest and suffer. It went on for HOURS. My parents and I took turns walking the floor with him. Mom and I alternated floating in a warm bath with him. The only relief he seemed to find was when mom stashed a warm heating pad under a blanket and cuddled him belly down on it. Even then, he sobbed quietly in his exhausted sleep. Finally at 930 pm after 8 hours of shrieking, I took him into the ER.
Prince William Hospital was great..they rushed him straight back and did tons of testing: CT scans, ultrasounds, blood cultures, stool testing, a full gamut. They weren't able to find much wrong, an elevated level there, a lower level there. They finally diagnosed him with a probable intussesception (bowels telescoping inside out, common in baby boys) and emergency transported him to Inova Fairfax for a pediatric surgery consult. As we walked in the building, he hiccuped and started smiling at everyone. It was eerie...like someone flipped a switch. The team was still prepped to cut into his belly but the radiologist decided to do one last ultrasound. Thank goodness he did because they didn't find the suspicious area this time. They chalked it up to a self resolving intussesception and sent us home at 7 am, weary but grateful. As we left, a doctor tossed over her shoulder that we might think about celiac. Um, what's that?
The next day he had some horrible poops. Anyone that has changed an exclusively breastfed baby knows that it really doesn't smell much. It wins the smell test hands down over a formula fed baby's waste. This smelled like a dead body rotting in the sun. It was eye watering. It was the strangest color too...white and green. Sorry if that's TMI, but it was definitely odd enough to make everyone ponder.
A couple days later, I gave Timmy a couple noodles to play with as I cooked dinner. A few hours later, we started in again on the cycle of misery and uncontrollable crying. It lasted for a shorter period...9 hours rather than 18...but still agonizing and obviously excruciating for him. Again the horrid diapers. Mom and I combed the days the incidents occurred to look for common factors and the only thing we could find was that on both occasions could isolate only gluten ingestion. I then started researching and figured that celiac disease was gluten intolerance on steroids.
We did a follow up appt with both the general physician and the military clinic to get a GI referral in the Tricare system. Our GP, Dr Buchinsky, admitted there was a good possibility that was a problem, though she noted the severity of the symptoms didn't match classic celiac disease. Most celiacs have a more sneaky pernicious onset...kids end up looking like they came out of an Ethiopian famine with a big belly and thin limbs, some diarrhea and discomfort, etc. It takes years to get diagnosed. This was not at all like that. Dr. B ran a celiac panel but warned us it would likely not be positive since he had been gluten free since the second incident and the test requires steady gluten ingestion. It was indeed negative, but I still wanted to pursue a diagnosis through a specialist.
After a HORRID experience with a GI NP at Walter Reed, I blew off all the torturous things she wanted to do instead of celiac testing. I ordered private DNA testing and the test came back two weeks later strongly positive for celiac disease. It's impossible to be more strongly celiac...with the gene combo he has, celiac is inevitable. And it apparently reared its head early. Celiac is NOT an allergy. It is not a sensitivity. It is an autoimmune disease where the body sees an otherwise innocuous piece of bread as a lump of poison and makes the body attack itself. The resulting damage to organs, GI tract and nervous system is cumulative and can lead to other AI disorders like lupus and diabetes or even cancer. You cannot outgrow it.
Luckily, there is a cure: maintain a completely gluten free diet for life. What is gluten in, you say? Oh good Lord. It's in barley, wheat, oats and rye. Guess what is in half the food on supermarket shelves? Oh yeah, barley, wheat, oats and rye and their derivatives. No pizza for Timmy! The more processed it is, the higher the likelihood is that there is gluten in it.
As I've done more reading, I am just floored by how underdiagnosed this disease is. University of Maryland has found evidence that 1 in 132 people in the US have it. It's more like 1 in 32 or 1 in 54 for certain populations like Finnish, Irish and British. That means that around 2 million people in this country have it with only 15,000 actually diagnosed. But those numbers are growing. People are finally recognizing the prevalence of it and the wide diversity of symptoms associated with it. You don't have to be a malnourished waif before you get diagnosed. Celiac disease can be anything from constipation alternating with diarrhea to extreme pain like Timmy to neurological issues like ataxia, behavioral problems, etc. This is not a problem for just babies, young kids or elderly people. In the US people go an average of 11 years before diagnosis. That's a long time to suffer damage to your system.
Now Connor is being screened. He has a 50-75% chance of also being a celiac. I'm taking the entire kitchen gluten free. Timmy is sensitive enough to have a reaction from a kiss from a parent post sandwich. It's daunting, challenging and exciting all in one to embark on gluten free baking and cooking. We're going to be focusing on simple organic recipes with alternative baked goods and focus on keeping as healthy as possible.
In a way Timmy's severe celiac symptoms have been a blessing. If they had not been so dramatic, if he had been a less smiley happy baby, if he hadn't reacted as instantly as he did when we could isolate everything he had eaten so easily, if, if, if...we could have had a child with severe malnutrition, neurological complications, and severe weight loss before drawing the dots together. Now we've had only three exposures, one accidental brother-feeding-granola-bars incident unfortunately, and hopefully we can minimize any future exposures.
I'm sure I'll be blogging about this quite a bit in the future...my mind is reeling with all the implications of this diagnosis. But for now...I'm so grateful we have an answer.
Just short of 6 months, I decided to let Timmy experiment with food. Connor had lunged at my lentils at 5 months, 3 weeks...so why not let Timmy gnaw a teething biscuit while I fed Connor his breakfast? I got my answer a few hours later when Timmy was screaming in uncontrollable shrieking pain. He couldn't nurse; all he could do was draw his legs to his chest and suffer. It went on for HOURS. My parents and I took turns walking the floor with him. Mom and I alternated floating in a warm bath with him. The only relief he seemed to find was when mom stashed a warm heating pad under a blanket and cuddled him belly down on it. Even then, he sobbed quietly in his exhausted sleep. Finally at 930 pm after 8 hours of shrieking, I took him into the ER.
Prince William Hospital was great..they rushed him straight back and did tons of testing: CT scans, ultrasounds, blood cultures, stool testing, a full gamut. They weren't able to find much wrong, an elevated level there, a lower level there. They finally diagnosed him with a probable intussesception (bowels telescoping inside out, common in baby boys) and emergency transported him to Inova Fairfax for a pediatric surgery consult. As we walked in the building, he hiccuped and started smiling at everyone. It was eerie...like someone flipped a switch. The team was still prepped to cut into his belly but the radiologist decided to do one last ultrasound. Thank goodness he did because they didn't find the suspicious area this time. They chalked it up to a self resolving intussesception and sent us home at 7 am, weary but grateful. As we left, a doctor tossed over her shoulder that we might think about celiac. Um, what's that?
The next day he had some horrible poops. Anyone that has changed an exclusively breastfed baby knows that it really doesn't smell much. It wins the smell test hands down over a formula fed baby's waste. This smelled like a dead body rotting in the sun. It was eye watering. It was the strangest color too...white and green. Sorry if that's TMI, but it was definitely odd enough to make everyone ponder.
A couple days later, I gave Timmy a couple noodles to play with as I cooked dinner. A few hours later, we started in again on the cycle of misery and uncontrollable crying. It lasted for a shorter period...9 hours rather than 18...but still agonizing and obviously excruciating for him. Again the horrid diapers. Mom and I combed the days the incidents occurred to look for common factors and the only thing we could find was that on both occasions could isolate only gluten ingestion. I then started researching and figured that celiac disease was gluten intolerance on steroids.
We did a follow up appt with both the general physician and the military clinic to get a GI referral in the Tricare system. Our GP, Dr Buchinsky, admitted there was a good possibility that was a problem, though she noted the severity of the symptoms didn't match classic celiac disease. Most celiacs have a more sneaky pernicious onset...kids end up looking like they came out of an Ethiopian famine with a big belly and thin limbs, some diarrhea and discomfort, etc. It takes years to get diagnosed. This was not at all like that. Dr. B ran a celiac panel but warned us it would likely not be positive since he had been gluten free since the second incident and the test requires steady gluten ingestion. It was indeed negative, but I still wanted to pursue a diagnosis through a specialist.
After a HORRID experience with a GI NP at Walter Reed, I blew off all the torturous things she wanted to do instead of celiac testing. I ordered private DNA testing and the test came back two weeks later strongly positive for celiac disease. It's impossible to be more strongly celiac...with the gene combo he has, celiac is inevitable. And it apparently reared its head early. Celiac is NOT an allergy. It is not a sensitivity. It is an autoimmune disease where the body sees an otherwise innocuous piece of bread as a lump of poison and makes the body attack itself. The resulting damage to organs, GI tract and nervous system is cumulative and can lead to other AI disorders like lupus and diabetes or even cancer. You cannot outgrow it.
Luckily, there is a cure: maintain a completely gluten free diet for life. What is gluten in, you say? Oh good Lord. It's in barley, wheat, oats and rye. Guess what is in half the food on supermarket shelves? Oh yeah, barley, wheat, oats and rye and their derivatives. No pizza for Timmy! The more processed it is, the higher the likelihood is that there is gluten in it.
As I've done more reading, I am just floored by how underdiagnosed this disease is. University of Maryland has found evidence that 1 in 132 people in the US have it. It's more like 1 in 32 or 1 in 54 for certain populations like Finnish, Irish and British. That means that around 2 million people in this country have it with only 15,000 actually diagnosed. But those numbers are growing. People are finally recognizing the prevalence of it and the wide diversity of symptoms associated with it. You don't have to be a malnourished waif before you get diagnosed. Celiac disease can be anything from constipation alternating with diarrhea to extreme pain like Timmy to neurological issues like ataxia, behavioral problems, etc. This is not a problem for just babies, young kids or elderly people. In the US people go an average of 11 years before diagnosis. That's a long time to suffer damage to your system.
Now Connor is being screened. He has a 50-75% chance of also being a celiac. I'm taking the entire kitchen gluten free. Timmy is sensitive enough to have a reaction from a kiss from a parent post sandwich. It's daunting, challenging and exciting all in one to embark on gluten free baking and cooking. We're going to be focusing on simple organic recipes with alternative baked goods and focus on keeping as healthy as possible.
In a way Timmy's severe celiac symptoms have been a blessing. If they had not been so dramatic, if he had been a less smiley happy baby, if he hadn't reacted as instantly as he did when we could isolate everything he had eaten so easily, if, if, if...we could have had a child with severe malnutrition, neurological complications, and severe weight loss before drawing the dots together. Now we've had only three exposures, one accidental brother-feeding-granola-bars incident unfortunately, and hopefully we can minimize any future exposures.
I'm sure I'll be blogging about this quite a bit in the future...my mind is reeling with all the implications of this diagnosis. But for now...I'm so grateful we have an answer.
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