Food Allergies the Finale

I have been experimenting with Lily's diet since her fourth birthday. She is allergic to wheat, corn, egg, oat, apple, and tomato. Allergic is not really the right word but it is a word people understand. She is actually intolerant, like some people are allergic to milk and they swell up, have trouble breathing, go to the hospital etc. Some people have lactose intolerance, they get a belly ache from drinking milk. See the difference? Lily is ..... intolerant. Don't know which word or how many words to fill in that blank, it is to the best of my understanding a bunch of enzymes that her body has trouble digesting. Her symptoms were quite severe as a baby and we have been very careful with her diet ever since.

The doctor recommended that we try re-introducing those foods at the age of four just to see, because many kids out grow this thing that she has. So I did, re-introduce. For the last four years I have been cooking every meal for Lily from scratch. She eats four to five times per day. Do you have any idea how many dishes that is? It has been a real challenge trying to figure out something she will eat, something she can eat, and something she should eat. Sometimes I get so frustrated. Like when we go visit family, or go on vacation, or move, it was all a trial. I would mess up, Lily would get sick. Corn and wheat are often hidden in the most unlikely places and I would feed her something and it would contain one of her triggers and she would get sick. No fun.

Now, I had to try to get her to eat stuff. That was so funny. Now I am trying to coerce my kid into eating an Oreo, just try it sweetie. She looks at me like I must be on drugs. The other day I tried to get her to take a bite of scrambled eggs, she acted like I was trying to kill her. She wouldn't taste mac n cheese etc. The girl wants her broccoli and blueberries. Go figure.

I know you are thinking I am so lucky to have a girl who wants to eat fruits and veggies. I know, I am glad both my kids like fruits and veggies, unlike their momma. The problem is that those foods are not portable. When we have to eat dinner at Mandy's volleyball game, a sandwich is a lot easier than messy, perishable fruits and veggies. Did I mention she wont even taste bread.

I have been feeling so bad all this time, because Lily has been missing out on all the good foods. Missing out on all the traditional foods that we all eat and love. She apparently doesn't mind. I am sure that will change once she goes to school next year.

So far, and we have been doing this for 6 weeks, so far Lily has not had any reactions. Now I have no idea what to do with all my time. I fed Lily a peanut butter and banana sandwich for lunch, she helped me make it and after getting past her fear of the bread, she gobbled it down and asked for another. That took a total of 2 minutes. It usually takes me at least an hour to prepare and clean up for just one meal. My head is spinning with the possibilities.

Of course, Lily still wants all the homemade no processed food crap I have been feeding her for her whole life. Poor girl. I have gotten used to eating this way too. I really learned a lot about food and ingredients, I am not sure we will entirely change the way we eat. At least now we have a choice. Cross your fingers that it is really and truly gone for good and not going to bite me in the butt. I still keep waiting for the other shoe to drop.

Food Allergies

History: When Lily was around 9 months old I discovered that eating wheat, oat, corn, egg, apple, or tomato made her sick. When I informed her doctor, he subjected her to many tests. When all those tests were negative he sent her to a specialist who gave her another battery of tests. All these tests and it has not been determined why Lily gets sick when she eats these foods. They tell me she will probably grow out of it by the time she is four, or she might have celiac disease, many people especially little ones test negative for Celiac even when they actually have the disease. It is all very confusing for me. Except, I just don't feed her stuff that makes her sick. That part is easy. The why she gets sick, that part is hard.

Now what: Lily just had her fourth birthday. I decided it might be a good idea to re-introduce some of these foods and see if she still gets sick. I started with egg. I put an egg in her pancakes every morning for about three days. At first I didn't see any reaction. No rashes, no diarrhea, no lethargy-I am thinking, great, this is fabulous, I am so excited.

Screaming: Then the screaming happened. For those of you who have been reading my blog for awhile, you will recall that Lily spent most of her twos and threes screaming at the top of her lungs all day long. And then she stopped. For the last six months we have had very few episodes. We had a bad episode while visiting Jeff's family toward the end of our vacation, how embarrassing. Mostly, Lily has been screamless. I mean whole days, even whole weeks with no fits. She communicated with words, it is lovely, so lovely. About three days after the introduction of egg into her diet, the screaming came back.

Was it the egg? Many other things happened during this time, that could have led to the screaming. Things like driving all day long. Due to Mandy's volleyball and work schedules, Lily went from having a daily three hour nap to not having any nap at all. That could lead to a grumpy gus. We also started swim lessons, which was new and perhaps a bit stressful at first. We also ran out of many of the foods Lily loves and have been unable to find these foods again. Like her favorite cereal, the gluten-free and corn-free flour we use to make pancakes, her cookies, blueberries, etc. So Lily has been refusing to eat some. Could it be that she was tired and hungry and just grumpy? Or was it the egg?

Previously she would have rashes and diarrhea. This time there was no physical reaction. A part of me is questioning myself. A part of me is wondering, is this food allergy thing just in my head? The doctors tests have all been negative, according to them there isn't a logical explanation or scientific evidence of her having an allergy or whatever to these foods. I have never heard of anyone else being allergic to such a weird combination of food. No one else in our family has problems with these foods or any foods. Lily is never sick (knock on wood), most kids who have food allergies get sick a lot, and she is almost never sick.

I just don't know what to think. There was a real difference in her behavior when I gave her the egg. There was a real difference in her behavior when we were on vacation and eating out at restaurants and she was most likely ingesting one of the foods which may or may not cause her to get sick. It has been a week since I have given her any egg, and it has been a week since she has thrown a fit.

The fits: Just to be clear, the fits are when she starts to scream and cry and I cannot snap her out of it for a very long time. She wont listen, or react to me, she just loses it. Usually we communicate, she listens and discusses things etc. But, when she is having a fit, she will get mad at something like if I call her pajama shorts, just shorts instead of saying pajama shorts and this will cause her to start screaming, lose all sense of everything and just scream and throw things for an hour. I will have to rock her or just leave her to get it all out. This used to be my life all the time, it was a nightmare. But, lately she will laugh and tell me that I said it wrong and go on with her life. It used to be everything like when she would have a cup of milk if I set the milk down on the table in the wrong spot or if her babies were put on the pillow in the wrong order etc. Everything would drive her crazy. Lately this behavior has totally disappeared.

Conclusion: I really don't have a conclusion. I don't know if it was the food that led to this behavior or if it was just the age. Was the fits last week a result of the egg or just a coincidence? This week there is still swimming lessons, still no time for naps, still none of her favorite foods, but this week there haven't been any fits. I just wish she could take a test and have a diagnosis. I just don't know if I want to keep testing the food or if I just want to let it go. Any thoughts?

Revolution Health Online Health Fair

Shawna James from Gluten-Free Girl is a fabulous resource for all things gluten-free. My little one is gluten-free and since so many of my blogging friends are as well I wanted to pass along some important resources. I just got through listening to a fascinating discussion partnering gluten-free bloggers with the experts in order to facilitate giving people who blog about eating gluten-free the power of knowledge. The participants in the discussion are as follows.

Alice Bast founder of National Foundation for Celiac Awareness

Sponsored by Revolution Health

Dr. Anthony DiMarino - Jefferson University Hospital director of division of Gastronentoerology and Hepatology at Thomas Jefferson University and Hospital.

Allergy Girl from Allergic Girl

Dianne from A Gluten-Free Journey

Rachel from Rachel's Recipe Box

Elwoodcity from Gluten-Free Gastro-Gnome

Gina Clowes from Allergy Moms

Gastro Girl from Gastrol Girl: All Things Digestive

This was a fascinating discussion and you can listen to it here. Even a girl like me who thinks she knows all thing Celiac learned a thing or two. Second important fact, Revolution Health is holding an online health fair featuring links to various not for profit health websites. If you go to this site and click on the links to the various health sites the Revolution Health people will donate money to those charities. You may learn something, but you will definitely help some wonderful organizations like my beloved National Foundations for Celiac Awareness raise some money.

There are literally millions of people in the US who have Celiac Disease but just don't know it. If you are not feeling well, why not stop by Celiac.com and get some information to find out if you might be a Celiac too.

The Cookie Store

Yesterday, I took Lily to the beach. We threw rocks into the waves, walked to the end of the pier, and saw two beautiful cranes and an alligator. Then, we went to McDonald's. We bought a milk and played in the indoor play area. Slides, tunnels, and tons of kids were all there for Lily to enjoy, and she did enjoy McDonald's for about an hour. Then we went to Five Seasons Whole Foods Market, AKA - the cookie store. Followed by a trip to the grocery store and then a trip to a local playground. We then went home, had some lunch and took a nap.

After Lily's nap, and after dinner, she was taking a bath and we were having a little chat. I asked Lily what we did today and she said, "we went to the cookie store." I thought that was funny seeing as how we did so many things, the only thing that had an impact on her was the cookie store.

Long story short is that Lily has a hard time digesting wheat, oat, corn, and egg. Those things make her sick and we found this out when she was only 9 months old. Living in Japan I didn't have access to the things I have access to here in America. One of those things is stores that carry cookies which are somehow magically made without any of the above mentioned ingredients. I tried making baked goods for Lily myself a few times, I tried mail ordering baked good for Lily a couple of times, while we were living in Japan. But, for the most part poor little miss Lily had never had a cookie in all her three years and 9 months of her life. Poor dear. She actually had rarely had sugar either. Poor, poor, Lily.

So we found the "cookie store". I actually find it ironic that I go to the health food store in order to buy junk food for my kid. he he, I will probably get struck by lightning for saying that.

When people find out about Lily's food issues they become fraught with anxiety and ask me what in the world the child eats. I am thinking to myself, ummm ....food, she eats food. Stuff like meat, potatoes, veggies, fruits, rice, beans, cheese, nuts - you know the stuff in the grocery store hidden around the edges. We don't really even go down the isles anymore, nothing from a box, or a can, or a bag for Lily. I guess I have just gotten used to cooking this way for her.

We eat bananas with peanut butter. We eat sweet rice with blueberries. We eat French fried potatoes (that I cut and fry myself) covered in fresh grated cheese. We eat meat at almost every meal, seasoned with salt, maybe some lemon and garlic or cheese. I am a pretty boring cook. We eat beans and rice, we eat lots of green beans and broccoli. Lot of nuts, Lily loves nuts, mostly pistachios and cashews, she wouldn't touch a peanut with a ten foot pole, but loves all natural peanut butter, by the spoon or on bananas. She loves all kinds of fruit, mostly the expensive stuff, like strawberries, blueberries, kiwi, and raspberries. We eat carrots and squash a lot too. I am a horrid and boring cook so I shy away from questions of what we eat because it is embarrassing, that I serve my family such plain and boring food all the time. Poor family.

Anyways, now I have learned the power of the cookie. Lily will do anything for a cookie. She will finish her dinner. She will stop saying that word that she has refused to stop saying for the past three weeks that someone taught her and she repeats every time we leave the house. Basically cookies are like gold. Now I know why other mommies get that look in their eye when they find out I didn't give her cookies, cakes, ice cream or candy. Now I know why Lily never listened to me before now. Just kidding. But, I am loving the cookies.

We may have accidentally bought the last box of cookies in the cookie store and the lady at the counter said they were on order. What will I do without my cookies. We have been back to the store and bought a box of cookies three times this past week. It was the only box of cookies in the entire store with no egg, wheat, corn or oat. It is a hard combination to try to remove from baked goods. I seriously stop by there almost everyday and see what is in and say hello. Bonus is that I found a playground just down the street and a little mom and pop grocery store on the way home.

These people know me well enough now after one week , that they strike up conversations with me. Just yesterday the lady stocking the apples talked to me for fifteen minutes about the Wiggles. But, nothing beats the cookie store.

I feel old

Your only as old as you feel and I feel old. Last week Lily and I expanded our daily schedule to include walking about a 1/2 mile to the gym and back. This is in addition to the walking to the playground and walking the dog. Therefore Lily has been walking a lot more than usual. When I say walking I really mean running. Jeff and Mandy have been very busy in the evenings and we find ourselves on our own a lot. I also have a ton of school work and find myself on the computer a lot. So Lily is not really getting as much attention from any of us as she is used to getting. Spending time together outside is helping us get through this difficult time. Lily and I have a great time talking, counting, singing, laughing and afterwards Lily eats better, sleeps better and plays quietly on her own better. All good things, excpet...

It seems that all this running, Lily doesn't particularly like to walk, she likes to run full tilt. All this running is causing Lily's endurance level to increase exponentially while mine is only increasing incrementally. Sunday for example we took the dog for a walk and Lily ran full speed for an entire mile. Lily's full speed with her tiny little legs is only a slow jog for me, but a slow jog for a mile is pushing up to the limits of my abilities. I fear that she will surpass me in the very near future. Therefore a little part of me thinks I should strap her into the stroller instead of letter her run. Wouldn't that be mean? It just doesn't seem fair that she is so strong so young. I think she gets it from her dad.

We did take her to the doctor. She is growing well. So her food allergies are not compromising her ability to grow, she is 75 percentile for height and weight. Which is delightful because she was under the 50th percentile before we found out her allergies and now she is more toward where I think she should be. While we didn't receive any additional council or magic cure for her ailments I was glad to have a professional tell me she is healthy. I worry, even if it is obvious from looking at her that she is fine, I still worry. I guess the wish for a doctor to be able to wave a magic wand and make her better is silly, but I couldn't help but feel a little let down that she isn't fixed. Because of all her vigor and good health I sometimes think that maybe she isn't allergic to anything, maybe she is better, maybe we were wrong. I guess it is wishful thinking or my brain playing tricks on me.

Complaining about Lily's allergies

Yesterday, I took Lily to her first ever birthday party (outside of the family). I have been avoiding them due to the cake issues. I have actually had nightmares, real nightmares. All the kids sit at the table and get a piece of cake. I tell Lily she can't have any cake due to her food allergies. She screams and all the moms tell me how evil I am not letting my baby have cake.

I spent the weekend trying to bake a cake without eggs or flour. The first one tasted great but was the texture of a gummy bear. The second one had a perfect cake texture but tasted like saw dust. I eventually got something decent, not great but decent and I brought a piece of cake to the party. When we got to the part where kids were getting cake, I slipped Lily's cake on a party plate and handed it to her. She did not notice the difference. She didn't eat it, but she didn't scream. She went about playing and having a great time. Poor girl thinks cake is gross.

It was a big hurdle for me, to let Lily go to a party. Doesn’t that sound weird? She had such a great time, I am so glad we went. I still haven't found the courage to do preschool or even a playgroup because they both have snacks. I just don't understand why a three hour long preschool or an hour long playgroup has to have a snack. I would have never even thought it was out of the ordinary if it were for Lily's allergies. I guess no one else thinks about those things either. I guess I could make a special treat for Lily, try to coordinate what I make for her with what will be served so she doesn't see the difference? Or I can just get her used to the idea that she eats differently? I am putting these decisions off for another year.

When I called to make Lily's doctor appointment for her three year old check up I was told they don't do well baby checks for three year olds. So I have to decide if I want to force the issue. I would like for Lily to have a check up. There really isn't a clear reason except that she has food allergies. I want to tell the doctor she still gets sick if she eats those foods. I am not really sure why, or what telling the doctor will accomplish. So far, we have been sent to Hawaii for extensive testing and they couldn't find the reason for her adverse reaction to eating those foods. They told me just don't give her the foods that make her sick. At every appointment there after I remind the doctor of her issues and they tell me she looks fine, just don’t feed her foods that make her sick. So, do I really need to go back and be told again not to feed her the foods that make her sick? On the other hand, shouldn’t her progress and growth be at least noted by the doctor? It is weird being in a military community, we get free health care, but we have to make a case for ourselves in order to get an appointment. Even if you do get an appointment and get to see the doctor you have to convince the doctor to take the time to give you their best efforts. More often than not people just dismiss you as abusing your free health care and they do their best to usher you out the door. I have found that the only way to get a doctor to listen to me is to bring Jeff. I took Lily to the doctor five times with her food allergies alone and was dismissed, I brought Jeff and we were sent to Hawaii. However, I have to convince Jeff that we need to see the doctor and that I am not over reacting. A part of me isn't sure, I mean what is the point?

Progress

It never ceases to surprise me how often I have to tell total strangers about Lily's allergies. I wrote all about it here if you are interested, otherwise just know she is allergic to wheat, corn, egg, oat, apple and tomato. People often offer her a cracker, cookie, or candy. Sometimes we are invited to play at McDonald's play land (lots of crumbs) or whatever. It seems that these conversations go pretty much the same way. First people ask me what in the world she eats, and second people tell me that back when they were kids, no one had food allergies and now it seems every has them. They usually go on to say that ADD, asthma, autism, and a whole host of other childhood diseases are more prevalent today than they were when they were growing up. They tell me that they believe that this is due to either baby formula, immunizations, pesticides, or preservatives.

I usually smile and nod, I have tried to argue but their eyes glaze over when I start to quote statistics, so I am making an attempt here to say that I don't think that the very things that separate the industrialized countries, that progress and science are causing kids who would otherwise be healthy to become sick. I don't think that progress makes kids sick. I think that due to progress sick kids are living full lives, with a few health complications and before when you were growing up and there weren't any kids with asthma or food allergies it was because they died before they ever made it to their first birthday.

I think that we are forgetting about the fact that in non-industrialized countries, the majority of kids who are born do not live to see their first birthday. Kids who do live to see their first birthday generally don't live to see their fortieth. Countries that don't have immunizations or a stable food supply have citizens who don't have asthma or food allergies, but that doesn't mean that immunizations, pesticides and preservatives cause those diseases. It is within the realm of possibility that children born with health problems are the children who die before their first birthday, both in our country before progress and in other countries which have not yet sustained progress, sick kids die. So we live in a country where the sick kids live.

I believe that pointing fingers at the progress which allows almost every child that is born in America to live to see their 70th birthday, and calling that progress detrimental to the health and well being of our children is frustrating. I do believe that our immunizations, pesticides, and preservatives need to be improved, we are not at a place of Utopia. Saying that they are evil in my opinion causes most of the scientists to shake their heads and walk away in disgust, thinking that the finger pointers need an education. We need to ask for and improvements in a way that is not a condemnation of all the progress we have made. I am so very grateful that Lily has a chance at a full and healthy life. I am grateful that even though America suffered a severe heat wave this summer, our grocery store shelves are filled with food. I am grateful for progress and I don't look back at the past thinking those were the days, I am grateful to be in the present and grateful my children will be there for the future.

Gymnastics and fits

Yesterday, Lily started her new gymnastics class. In this class she goes to the same place, with the same teacher, and does many of the same things, but in this class she does it without her mom. I sat in the mommy area, while she did her gymnastics. The first 1/2 hour of the class went well. They did all the same things that she has been doing for a year now in her toddler gymnastics class and she was very willing to cooperate. Then, they moved on to some new and different things and she went ballistic. She screamed and cried and called for her, "Momma". An entire 1/2 hour of crying.

Her teacher said, she thought Lily did very well, so did all the other moms. I guess everyone freaks out a bit at their first class without mommy.

Lily has never been the type of baby, toddler, kid who calls for her Momma. She doesn't really like to be held. She likes to go-go-go. I am thinking that maybe the fact that I am always there for her is part of the reason she is so independent, you know you don't cry for the things you already have. Anyways, I feel bad, but I felt a little bit of happiness that she wanted me. It feels like the first time she ever really wanted me. That is so petty.

Later Mandy and I went back to school shopping, and after it was all said and done, she said she had fun. Both my girls were nice to me on the same day. That was weird.

Lily is having a bit of an allergic reaction, now for a couple of weeks. So she is out of sorts and not at all fun. That coupled with the gymnastics class, caused her to be quite a handful yesterday afternoon. I decided that even though she is having a reaction and even though she isn't feeling her best, I still needed to enforce the rules. She was having screaming fits about everything. So I gave her a time out. First I put her in her chair and asked her to sit there until Mommy came to get her. She picked up her metal chair and threw it across the room. That chair went about 3 feet up and about 8 feet across. The girl has a future, in either wrestling or on a Jerry Springer show. So I decided to make her time out place a pillow. She settled down and then she sat on my lap with her arms around me holding me fiercely for a 1/2 hour. She wouldn't let go. Again, this is not a typical behavior of Lily. I did the horse whisperer stuff, well that is what I call it. I talked to her about things. I talked about the hard part of gymnastics, I told her that I understood she was scared. I put into words the reasons she was upset as best I could, so that she would know, I know, and she could quit screaming and crying trying to express herself. I get it Lily let's move on. Then I started to talk about some things she likes, got her laughing and our day went on. No more fits. I think that if I didn't stand up to her she would have continued to go on and on with her fits for the rest of the day.

When Lily is having an allergic reaction she is worse than all the kids I have ever seen on the Supernanny combined. But, on the days, which is most of the time, when she is not having an allergic reaction she is a sweet independent easy child. I sometimes feel bad about having to be strict with her, because I know the bad behavior is due to her discomfort and I also think that the chemistry of her body is affected by the reaction. I also think though that allowing bad behavior only makes it worse. It is a difficult position for me. Very frustrating. Mostly I am not completely sure that what I do is the right thing, mostly I feel like I wish I had definitive answers.

This and That

I have officially finished my desktop publishing class. I got an A. I learned a lot, but mostly I learned how much I have to learn. I am currently taking introduction to Java Programming. So far I am loving it, but it is only week five. Next term I am thinking about taking two classes instead of just the one. The second in the series of Java programming and the first in the series of website making. I already know a little about html so I thought this might be a breeze. However, the scholarship I use only covers one course per semester and so this would come out of pocket, and two classes is a lot. But, all my classes will be out of pocket at our next base so who it is either now or then. Unless of course by some miracle we get another overseas assignment and that base offers a 50% scholarship as well. Everyone says oodles of money is coming our way now that Jeff has made Master sergeant, we will see.

Lily turns three this week on Friday. We have decided to have a little party just the family. I bought several pre-made cake mixes that are free from wheat, egg, and corn. They are most definitely the most awful thing you have ever tasted but at least we will have a place to stick the candles.

We are currently working on potty training. Working hard, not making any progress. Lily is so sweet, but she will not go in the potty. Never has, never will. We tried naked, but she just cries and cries, I feel bad making her be naked when she is so uncomfortable. So we are doing the underwear and pants. She keeps looking for places to go - so she doesn't go on the carpet and make a mess. Behind the curtains, in the bathroom next to the potty, on the exercise bike in the guest bedroom. She can hold it for more than four hours. She can pull down her pants and sit on the potty all by herself. She wont actually go in the potty. I have even tried bribes. Well we are keeping on keeping on. My thinking is that if I keep trying all day everyday and if I am nice about it she will eventually relent. Or not. She loves having all her babies go potty. I don't know if she doesn't understand the concept yet or if she is being stubborn or if she is uncomfortable with the concept.

Next weekend we are hopefully going to a huge festival with a bunch of friends and then camping in the area. This is at a big lake, with fireworks and sounds very fun. Very excited we are.

And finally. During the six weeks of the Biggest Loser contest I lost 15 pounds, I worked very hard at it everyday. Since the contest I have been a complete slacker. I haven't been going to the gym more than a little bit here and there. I have been eating too much etc. So today begins my new resolve to get back on track and hopefully loose another 15 pounds in the next 6 weeks. For me a 6 week push seems easier than the concept of a year on the diet. So back to the gym, back to only eating what I need and not eating for fun or pleasure. I told my family, and said I was sorry if I was going to be grouchy while I get used to being without sugar again and they all said, what - you are always grouchy I am sure we wont even notice the difference. And they wonder why their dinner was burnt.

All before my first cup of coffee

I woke up yesterday morning to the sound of Lily talking in her crib. I had stayed up way too late the night before trying to work on writing the code for the webpage I am making for my dad. I got something up and running at Spike's Pickleball Paddles but I am not done yet. Takes forever when you are a beginner at both writing the html code and designing a layout – too many options both on the writing of the code and where to put it all. Thanks for all your advice on the layout.

So I get Lily out of her crib, change her diaper and carry her downstairs. Usually I don’t carry Lily anywhere because she is a very independent little toddler. However, Monday Lily jumping around hurt her big toe. We took her to the doctor on Tuesday as it was swollen and she was hobbling around the house. She got her first x-ray and the doctor told us that little kid bones are not fully developed and it is hard to tell if there is or is not damage. He do know for sure that the toe was not broken and that there was some internal swelling. He advised us to keep her off it as much as possible and to come back if she isn’t better in a week. I have been trying to find ways to keep Lily off her feet. Lily is a very mobile child, very active and this inactivity and being carried around is not fun for her at all.

By the time we get downstairs and I set Lily on the couch, she is very irate. She begins her tirade and screams about every little thing. Have I ever mentioned to you that the sound of Lily’s voice of dissent is louder than the jets that fly over my house? I feel bad for her and I try my horse whisperer technique to stop the screeching. This wasn’t working very well.

I left her on the couch with her screeching as my attempts to help were not met with any success, I moved on and hoped she would too. Next, I cleaned up the cat poo that our dog had dug out of the cat box and spread around the house. Our dog enjoys eating cat poo. Jeff had cleaned the cat box before we retired, and the dog sleeps in Mandy’s room with the door closed. Still the animals thwarted us and I had to clean cat poo before my coffee. I don’t much like to do anything before my coffee especially when I am very tired.

As I was vacuuming and Lily was screaming Jeff came downstairs and did his horse whisperer technique with Lily. His always works, mine is very sketchy. So Lily got all good and sweet, I finished the animal excrement removal of the morning, washed my hands and prepared to get Lily her breakfast. I opened the refrigerator door and the bar that hold all the stuff in the door fell off. Down came all the glass bottles of various items. Including but not limited to a 1 liter bottle of fish sauce. I don’t know if you have fish sauce in your kitchen, but the smell of a liter of fish sauce is enough to kill the average mom before her first cup of coffee. I think that fish sauce is made of fermented fish broth. It is tasty in small portions, mixed with some curry and some coconut milk. Mmmm. We do not have access to soy sauce that doesn’t contain, wheat or corn so I use a lot of fish sauce which is naturally without wheat or corn. Most Thai food is without those items of which our Lily is allergic, so I buy a lot of stuff from the Thai section of our store.

It took me a ½ an hour to finish cleaning the fish sauce, broken glass, get the smell out of the house and repair the refrigerator. I then got Lily her breakfast of banana slices slathered in all natural peanut butter. Lily is happily eating her banana slices, covering her hands and face with peanut butter – it sucks not having that bread buffer. I begin to make the coffee. Just then Mandy enters the kitchen, imagine the rabbit in Alice in Wonderland, Mandy is always in a hurry and running late in the morning. So she says in her exasperated I cannot believe you have the nerve to be in my way tone, EXCUSE ME! And I am ushered out of her way, she then SLOWLY goes about making her breakfast right in my way. I screamed at her about not being the only person on earth or something not very nice and she muttered under her breath about how she said excuse me. So Mandy left for school with a chip on her shoulder, great. I finally got to make the coffee, while it percolated I washed Lily’s hands and mouth. She was still hungry so I got her some cold rice, some cold beans, some cheese and some grapes. All her favorite breakfast foods and some milk. Finally I poured my coffee and added my beloved cream and sugar.

I had more first sip of Boca Java’s - Blogs of Bravery. It is a combination of dark and medium beans. I loved it. Best cup of coffee of my life. I heartily recommend you stop by their website and buy as much coffee as you can.

Wheat

My two, almost three year old, daughter Lily is allergic to wheat, corn, oat, egg, tomato and apple. Click here for the whole sorted story.

I have become pretty good at managing this problem over the last two years. It has become second nature. I worried about getting her proper nutrition, and about being able to cook something edible, and about having to cook everything from scratch every meal of every day. Things are pretty smooth and I am used to it now.

When I first started to try and figure it all out I did a lot of research. That is how I discovered blogging and one of the first blogs I discovered was, Gluten-Free Girl. She discovered that she has Celiac Disease in her 30's. She is a wonderful writer and wonderful cook. I have dearly loved so many of the recipes I have found at her website, like lemon-rosemary-garlic roasted chicken and potatoes, and salmon covered in orange marmalade-mustard-wasabi. Go to her blog and find the recipes, you wont be sorry. But, more than the recipes I love her enthusiasm. She believes that having to live without wheat is a blessing not a curse. It gives us a chance to try new things, and discover new foods. I have to say that the food we are eating now does taste better than the wheat food. Her enthusiasm is contagious. And now she is being featured on the foodnetwork. How amazing. Congratulations Shanna! She also has tons of great links to other food bloggers most are not gluten free but all have really great recipes. Yummy!

For 7 weeks and 2 days I participated in Misawa's Biggest Loser contest. I came in 23 place out of more than 200 participants. Not great but not terrible either. Everyone on my team, except me, quit the contest so our team was disqualified. So sad. Talk about big losers, just kidding. During the contest I lost 15 lbs. Yeah. For food, I ate what I was already cooking for Lily. I had done all the research and I was already cooking it so I just made a little more and ate the Miss Lily diet. Wheat-free, corn-free, egg-free, oat-free, tomato-free, apple-free. During the contest I also made sure I drank plenty of water and exercised everyday.

The contest ended the day before my birthday. And on my birthday I had cake, and then I had some pizza, and some toast, some sandwiches. Not all on the same day, but that week. I was good about calories but I started eating regular food again. I didn't exercise all that much or drink as much water. While I was participating in the contest I had started to feel better. I didn't realize it at the time, because the progression of feeling better was slow. But, when I went off the Miss Lily food diet all my previous conditions returned like a thunder bolt and I noticed. My aches and pains, sluggishness and poor temperament returned. Bam! Not slowly but they all just returned. Back ache, knee pain, ankle pain, stiff neck, head aches, allergies, always tired, no motivation. I had felt that way for years, maybe my whole life and I was feeling better and didn't know it. I am now wondering if Lily got her food issues from me?

So I am back on the Miss Lily food diet, including the exercise and water. I hope I feel better soon. I could be the water or exercise or a combination of all three or a coincidence? I guess I will have to experiment to figure it all out.

McDonald's: Fries Have Potential allergenic - Yahoo! News

McDonald's: Fries Have Potential Allergens - Yahoo! News
I have always known that My Lily has a reaction to eating these fries. At least now Mickey D's is labeling them properly. She also has a reaction to eating the hamburgers, even when we purchase them plain and with no bun.

I cannot tell you how frustrating it is to be told that a food does not contain wheat and then watch Lily get sick because it really does have wheat in it. The labeling rules are such crap! I am so grateful that they have been improved and this new admission by McDonald's is a really positive step in the right direction. Yeah.

A couple of weeks ago Lily had a mild cold. I haven't been able to find a cold medicine that she can take. She has only been sick with a cold a couple of times and I should be more pro-active. So I didn't give her any meds during her cold. She had a really runny nose and we went through a couple of boxes of tissues but poor Miss Lily had to live through the cold the old fashioned way.

Then, a few days into the cold she woke up in the middle of the night with a cough. She coughed for hours. So I got her up and gave her some medicine, and that medicine contained some incident which caused an allergic reaction. I knew this would happen as I used this same medication the last time she was sick. The label does not list any bad ingredients, but her reaction is my only barometer. So after taking the medicine we sat up for an hour and watched late night TV and her cough went away. She went back to sleep and the whole scenerio was repeated the next night.

After those two doses on two consecutive nights Lily's cold went away. However, now she was embroiled in the mist of a horrid allergic reaction. This includes rashes, diarrhea, lethargy, and lots of screaming discomfort. So after the cold was over we had another week and a half of feeling lousy. Just because I gave her the medication. I never know the right thing to do, let her cough and get no sleep for two nights or feel awful for a week and a half. The biggest problem is that she is allergic to both corn and wheat, so the meds that don't have wheat have corn and vice versa. I am hoping she will never get sick again. I have called the manufacturers of all the cold meds that I have access to here in Japan and none have ok for Lily. So I guess I have to go through the doctor and pharmacy. Fun.

So yeah, McDonald's. According to the new law wheat has to be clearly marked on products along with many other allergens, but not corn, so basically I am still screwed!

plantain

A couple of weeks ago while watching Sesame Street, I discovered plantains. I had heard of them before but never tried one. On Sesame Street they showed a mom cooking up some slices of plantain in a little vegetable oil, it looked pretty easy. So I bought a couple and gave it a try. It was fantastic, they taste like crackers, light and crisp. We have them salted or with a bit of cheese. Lily loves them. We call them banana cookies. Another bonus is that it slows down the poop machine a bit. A diet full of beans and veggies makes for a lot of poopy diapers.

We over bought the plantains and a few of them ripened to a yellow. You must cook them green or it doesn't work. So I didn't know what to do with the yellow plantains and I decided to experiment. I ended up making the best chocolate cupcakes ever, and they were without flour or egg. They were totally Miss Lily friendly and she got to taste cake for the first time. It was light a fluffy and moist. I was so pleased with myself. I mixed together mashed ripened plantain with some ricotta cheese, added a little vegetable oil and some sugar. In a separate bowl I mixed cocoa powder, baking soda and salt and then I sifted the dry ingredients into the wet. I haven't worked out the exact measurements yet, but I scooped the batter into a muffin tin and viola, chocolate cupcakes. I am currently waiting for another batch of plantains to ripen, but we keep eating banana cookies.

We have also been eating a lot of banana slices topped with organic peanut butter, yum. Very messy but worth it. I am very excited whenever I am able to expand Lily's limited diet to include something that is friendly to her food issues and something she is willing to actually eat.

She is allergic to wheat, oat, corn, egg, apple and tomato.

Wheat Free, Worry Free by Danna Korn

Last week as I was furiously trying to run last minute Thanksgiving preparation errands I stopped by the post office and was surprized to find that I had two packages to pick up. The first was from Jen at Not Calm (dot com) which is the most clever blog name I have ever seen. Jen and I had an international exchange - Lemony Snicket, gluten-free flour and brownie mix for Japanese stationary. Thanks Jen.

Our other package was this book. Danna Korn is a mother with a child who has Celiac disease and has written a few books about how to deal with it all. This information has been so helpful and soothing. It is always nice to know you are not alone in your struggles.

Lily has not been diagnosed as having Celiac disease. In fact she has taken several blood tests and all have come back negative. Negative blood tests are encouraging but not a diffinative, she does not have Celiac Disease, and not a she will never have Celiac disease. Currently she is labeled as being Gluten intolerant. It is so complex with all the labels and tests, but the long and short of it is Lily cannot eat gluten, which is science speak for wheat. She also has the same reaction to corn, oat, egg, apple and tomato so she can't eat those either. It may be a life long sentence and it may be until she is a bit bigger.

I was able to make Thanksgiving almost completely what we refer to as Lily friendly. We had some corn on the cob and some rolls but other than that we were good. Amazingly enough Butterball Turkeys have corn starch in them, what is up with that! They somehow shoot the turkey full of corn starch. I am so amazed, I thought meat was safe, turkey isn't processed meat it is still on the bones, so frustrating. I also discovered that her toothpaste is not Lily friendly. Toothpaste, what a pain. Plus, she has a cold and there is not medicine on our base that is Lily friendly.

I have been a bit frustrated by this over the last year that we have been trying to manage her food issues. Reading this book and the blog Gluten Free Girl have been a real help with my attitude problem. It is possible that if we didn't discover her intolerances at such an early age (9 months) that she could have developed a whole host of serious problems. Now she has no real problem just that she has to have a special diet. A diet with no junk food, no processed food, only health lovingly prepared food. Intelectually speaking that isn't such a bad thing, having to eat healthy, not being able to tolerate junk. We should all be so lucky. But, in my heart I feel like she is missing out.

I guess through this process of dealing with Lily's food issues I have discovered that I have some crazy food issues myself. It is nice to read in the book that I am not alone. It is not crazy to want to take part in the rituals I grew up with. Traditions like eating birthday cake, dessert, and crackers. It is hard to give up those things. I am having to wrap my mind around the fact that those traditions are harmful to Lily and giving them up is not taking away something but giving her something, the gift of good food. I associate tasty food with more than just the pleasure of eating it, I associate being deprived of that food with more than just not having a bit a pleasure that only lasts a moment on the lips. The whole food issue is amazingly complex. So I am trying to look at this whole experience as a gift to both Lily (to grow up eating well) and myself (to see food as simply food and not as a metaphor for being left out).

Processed Food

What do the following foods have in common? Grapes, tofu, cheddar cheese, bananas, rice, beans, chicken, beef, pork, fish, broccoli, beets, potato

give up? These are all foods Lily eats. Do to her food allergies (wheat, corn, oat, egg, apple, tomato) she has a bit of a limited diet.

What these foods have in common? Cookies, crackers, chips, brownies, bread, Macaroni and Cheese

Yes, they are all foods that Lily cannot eat.

But wait, I found a company that makes all of these foods without any of the ingredients that make Lily sick, so $50 later we had a box in the mail.

But, Lily wouldn’t eat any of it. There is something wrong with my kid she hates junk food. Should I be upset? I have been trying to figure out how to make all this crap from scratch and then when I got it in the mail I was so excited, and yes, it all tasted good. But, no she wouldn’t eat it. She eats tofu plain, but wont eat a cookie.

Celiac Disease

Our Lily gets sick when she eats wheat, corn, oat, egg, apple or tomato. We have no idea why. This is her story.

Lily had a rash on her face which started about a week after she was born. The doctor kept telling me it was baby acne and not to worry. At about 3 months the doctor decided it was no longer baby acne but since she was gaining weight at the appropriate rate this was not something we should worry about. (turns out her formula had a bit of wheat or corn in it).

Lily began to eat solid food at four months. I gave her the food just as the doctor recommended one food at a time to test for food allergies. I did not detect any food allergies at all for any food. I was looking for a change in her condition not a continuation of the same old thing. Lily, who was at the time developing at a rate much faster than the other children in her play group, stopped developing. She was rolling over at 8 weeks and sitting up etc. But at four months she stopped rolling over and sitting up, she slept a lot and starred off into space a lot. She also developed a bad diarrhea problem and a bad diaper rash. The rash was so bad that the skin would bleed when I wiped off the poop, which happened about 8 to 10 times per day. The doctor said this was normal? Babies get diarrhea and rashes, she is gaining weight, she is tracking correctly on the growth chart so all it fine.

At nine months Mandy and I took Lily to America. The toll of the flight and the increased amount of solid food led to a huge reaction. Lily started to throw up, in addition to the diarrhea and rashes. I ended up getting sick too so I thought she had a bug of some sort. The trip was very difficult because of all the vomit and diarrhea. She was an angel the entire time, I don't even remember her crying at all. She slept a lot or sat quietly. I was feeding her oatmeal and apples every morning.

When we got home from the trip I was reading an email from the babycenter.com and they were discussion wheat allergies and other food allergies. They discusses how parents often miss food allergies because sometimes the children don't begin to have a reaction until after being exposed for awhile. I thought to myself, maybe she is allergic to something. I remembered that she used to be so active and LOUD and now she is so quiet and sweet.

I stopped feeding her solid food for a couple of weeks. She got better. The vomiting, rashes and diarrhea were nearly gone. I re-introduced foods again one at a time and was able to tell what her reactions looked like. I can tell when she gets a hold of something that does not agree with her, she gets quiet, she gets little bumps around her mouth long before she gets really sick. So now armed with this information I eliminated the foods she was having a reaction to from her diet.

At the next doctors appt I mentioned to him all that I had discovered. The doctor insisted that we give her a battery of tests to discover why she has a reaction to these foods. I took her to the lab and held her down while they took 5 vials of blood from my baby. That was horrific. All the tests came back negative. The doctor insisted that she go see an allergy specialist in Hawaii. So we flew the whole family to Hawaii and he did a battery of tests, scratch tests, blood tests, still nothing. According to the doctors there is no reason for her to be getting sick from those foods. They said they could take some scrapings of her colon, I said no thank you. So we don't really know why these foods make her sick, just that they do. The allergy specialist and my doctor both recommend that I don't feed her stuff that makes her sick, ya think?

Now came an entire year from one until two where I had to learn about the hidden wheat and corn in just about everything. Wheat and Corn are not really labeled on food in a way that I can understand. Just about all ingredients contain some wheat or corn. Baby food, pure natural baby food contains citric acid, which is made from corn. It took me ages to actually eliminate all the bad foods from her diet. But, by watching her closely I was able to get to a place where she is well more than sick.

So now the true Lily has emerged. She is not a sweet and quiet girl. She is loud and wild. She loves to run and play and scream. A huge part of me is so glad at all of this craziness. I am so glad that she is well enough to throw temper tantrums and has so much energy. The rest of me wants some ear plugs. This is our story, hope it helps someone else!


Posts I have written about our struggles...

January 17, 2005 - Celiac Disease

October 19, 2005 - Processed Food

November 19, 2005 - Wheat Free, Worry Free by Donna Korn

December 1, 2005 - Terrible Twos or Maybe Not

January 27, 2006 - Plantain

February 14, 2006 - McDonald's

February 20, 2006 - Miss Lily

Blogging Buddies with similar struggles...

Gluten Free Girl - Shauna writes a lovely blog about living gluten-free. She is an amazing writer and shares wonderful recipes and experiences with eating out. She also has the most amazing attitude toward Celiac Disease and learning the find the silver lining in eating gluten-free.


No Appropriate Behavior - Another mom struggling with keeping her kids diet safe from the food that make them sick. It is always nice to find someone who shares your woes.

Other Internet resources I have discovered...

The Celiac Disease Center at Columbia University

Celiac.com

Gluten Solutions - They ship to APO Addresses and I love them!

Tell me about your struggles and lend me your resources!