Saturday, October 29, 2011
Tom’s-With or without fluoride, this is a great toothpaste that does not contain gluten. In fact with the exception of maybe two lines of products, Toms of Maine products are completely gluten free. They sometimes offer coupons for free samples. Wren recommends the Silly Strawberry fluoride free toothpaste. It’s made brushing teeth a lot less work!
Larabars-There is so much to say about Larabars. The ingredient list is short and contains real ingredients; all of their bars are gluten free, and most are dairy free, non GMO, vegan, kosher, soy free. There is nothing but nuts, fruits, and spices, and they are delicious! A staple in our house, we buy them in bulk when they are on sale. Kroger has them 10/$10 right now, and I had Kroger coupons. Our pantry looks like a Larabar explosion occurred.
Enjoy Life-I am addicted to Not Nuts mix from this company. Addicted might not be strong enough of a word. They not only rid their products of gluten but of the top 8 allergens people struggle with(we are probably allergic to at least 5). Somewhat pricey for the portions, they still can’t be beat when it comes to price or safe products.
Kiss my Face-When I buy sunscreen, I don’t just look for gluten free. I want mineral based that offers the best protection without toxic chemicals for a price I can actually afford. Kiss My Face bought on Amazon is what I found. This was one of my most exciting finds due to the duration of time I spent seeking this product(and if you are wondering why someone needs gluten free sunscreen, wait till you have children!)
Jason’s-Gluten-free soap may not be a necessity if you’re over five years of age and don’t attempt to drink it out of a tea cup in the bathtub, but I like the idea of not letting any of what I call “satan’s ingredient” in my home. Jason’s makes a soap, an olive oil soap I think(it’s green and in my shower, but I threw away the package and can’t remember exactly) that is so good on the skin, available at Kroger, and lasts forever. Jason’s has other gluten free products as well, but check the package or the website to verify. The soap clearly says gluten free, and it’s good to know my husband can eat it if he ever really gets in a jam!
Wholesome Foods Bakery-This is a new discovery, one that makes us happy! We rarely eat grains since we’re mainly on a Paleo diet, but when we do, this is where we do it. Owned and managed by a mom and her daughter, both who actually have Celiac, nothing contains gluten, most items are free of dairy and corn, and all of it is perfection. This is not food that’s good for gluten free food; this is just amazing food. Check out their website. They will ship your order, such a dangerous prospect for a girl who loves fudge brownies.
Applegate-Sausage, nitrate-free turkey and chicken slices, and a ton of other foods come from Applegate. We shy away from the chicken nuggets and other non-Paleo selections, but this food is delicious with few ingredients, and high quality ones at that.
Melaleuca-I used to be a Marketing Rep for this company. I bring this up to offer full disclosure, but I don’t add them to this list because I used to work for them. Check out the website at melaleuca.com/ps. There is a button on the lower left hand side that clearly says gluten free, and clicking on it will take you to their more than 200 gluten free products, including vitamins. If it’s from Melaleuca, it also contains no other harsh ingredients and is super safe because of what’s not in them. Cleaning products, shampoo, some foods, and more are included on the extensive gluten free list, and finding what is gluten-free is not a challenge for once.
Burt’s Bees-Not all Burt’s Bees products are gluten-free, but if they contain gluten the words oats, wheat, barley, etc. will be used. They don’t try to hide behind the 500 different things gluten can be called. What an honest and amazing concept! We love the baby wash and shampoo, an all in one bath treat for the kiddos that makes fun, fluffy bubbles.
So Delicious products-From coconut milk to coconut milk ice cream, this has been a favorite since Wren’s diagnosis. The ice cream is a sweet treat on occasion, and the milk has made my husband happy about breakfast again. Coconut everything is all the hype right now, and for good reason. The health benefits are solid and the taste is amazing. I also frequently find coupons, which makes a good thing even better.
Wren will be a princess. Sammy will be a pumpkin. We will walk around our neighborhood screaming trick or treat and come home with a huge load of candy, candy no one in this house can eat. What to do?
First of all, I know there are some gluten-free candies. However, Wren is allergic to a lot and finding them without eggs, corn, dairy, and gluten is a bit of a challenge. Plus, we don’t allow high fructose corn syrup, hydrogenated oils, or tons of refined sugar to enter our house or bodies just by personal choice, so candy is kind of a junky area for us. We don’t want the kids to miss the fun of Halloween, so we have come up with a plan: the candy trade. The kids will get to come in from trick or treating and trade their candy for something else. Wren is going to get the art set she’s been eyeing for weeks. Sammy will probably just get some breast milk because he loves it and doesn’t so much care what else we give him right now. He’s a boob man. It’s Halloween without the sugar hangover. I’m pretty excited and will let you know how it goes.
This plan comes from one of our living with Celiac principles: It’s all about attitude. Halloween can be a bummer holiday if you can’t eat any of the junk you work so hard to attain. However, completely shutting out the trick or treat tradition, if that is how your family usually celebrates, can lead to resentful children who feel isolated. By finding a way to participate but make it Celiac friendly, we’re hoping to create our own, new traditions that work for us. We’re new at this, it may not work, and if not we’ll try something else next year. I’m hopeful. My daughter came to me yesterday and proclaimed: “I would like lunch, Mommy. I would like it to be roast with green beans and avocado. Thanks.” She then pranced off in her princess tiara wearing nothing else but her big girl panties. She’s a pretty unique, awesome kid. I believe she’ll adapt just fine. And my son frequently wakes up from his nap, looks at me, and in a British accents says, “Bugger!” They are both pretty unique. I think they’ll enjoy living life to the beat of our own drum.
Friday, October 14, 2011
The two weeks after Dennis’ Celiac diagnosis have not been particularly kind to him. The day he headed back to work after being diagnosed, his office had a team building event that included a barbeque and a dessert bake off where every person in the place bought the biggest, white flour, full of gluten treats on the planet for everyone to taste. Though we don’t advocate processed food in our house, Dennis downed a whole box of gluten free snickerdoodles to survive. The next challenge came from being sent to the fair for team building(his job really is pretty awesome) and watching everyone around him eating whatever they figured out a way to fry this year. Dennis was able to locate the stand with gluten free French fries, but since he has been thoroughly schooled on cross-contamination risks, he passed it up due to the uncertainty of high food standards at the fair.
I think the biggest challenge for all of us came this week. Sitting on Dennis’ desk when he arrived at work Wednesday was a yellow cake with chocolate icing made by a very sweet lady. Her family has food allergies, and she assured Dennis it was made with gluten free flours and safe. She did confess that her house is not gluten free, but she was sure she had chased every crumb of danger from the place before she made the cake. With a smile, she dropped the cake bomb on his desk and told him to let her know if it was good.
Our rules for the food people can eat inside our house are pretty easy to follow right now: don’t eat it unless we make it or unless it is from an establishment that has been certified and guaranteed to serve gluten free, such as Wholesome Food Bakery. This cake did not meet the criteria. When Dennis told me about it over the phone, he asked my advice. I pondered before answering.
Frankly, I’m tired of being the food Nazi. I have a definite path I want our family to be on as far as food is concerned, and knowingly ingesting gluten is obviously NEVER allowed. However, this cake fell into a grey area: probably gluten free, but suspect. To me, it was a definite no, but this was Dennis' cake, and I don’t want to pull the reins so tight that everyone ends up rejecting roast and veggies to live on gluten free pizza and cookies. Plus, there is a difference between telling your two year old what to eat and controlling your husband's food consumption. So I threw it back on Dennis by asking my gold standard question: Would you let Wren eat it?
Dennis sat there for a while knowing his answer would directly affect whether he ate the cake. Finally, he said, “No, of course not. I have no idea if this is cross contaminated. There’s no way to know.” He brought the cake home in tact without the smallest piece of icing even touched. Then he left it on the counter for me to stare at all the next day.
There are a lot of memories associated with yellow cake and chocolate icing: every childhood birthday party, days of licking the bowl the mix was left in, eating cold icing right out of the tub using your finger after it’s been in the fridge. I knew when I woke up that morning that I would not eat that cake, but that certainty did not make my day easier.
In the end, no one ate the cake. We called one of my girlfriends and asked her to please come get it, but she was out with friends and couldn’t make it before the kids’ bedtime. We didn’t want to throw it away because of the expense, time, and consideration that went into making it. I think we have convinced some of Dennis’ family to come take it this weekend. For now, it’s hiding in the fridge covered by roast and veggies. We may not be able to eat it, but we can smother it in carrots.
Monday, October 10, 2011
Beginnings are hard sometimes. When I started contemplating blogging again, I couldn’t think where to begin. This year of our lives has been full in both good and bad ways, and since I didn’t document all of the events as they happened, I couldn’t figure out how to jump in. Did it begin with Sammy’s birth? His pneumonia and miracle recovery? Wren’s Celiac diagnosis, or Dennis’? With friendships and family connections that pulled us through? Where?
It struck me recently that it all began before that, last year actually. It started with a little girl named Sierra Rayn who fought a tough battle with neuroblastoma and became an angel on November 23rd of last year. It started there because the events that followed her passing have affected my family for life. With permission from Gen, Sierra’s mom, I’m going to tell you why.
I have been on conference calls and such with Gen for some time, but we’ve never met. However, I received all the updates about Sierra’s condition and sat with my family and cried when she passed. Shortly after, Sammy was born, hospitalized, life sort of went nuts. It wasn’t until March of 2011 that I saw Sierra’s face again in a magazine put out by a company I purchase health products from. The company interviewed Gen and shared information about the foundation she started for Sierra.
Excited to read about Sierra’s life and dreading to read about how it ended so early, I stood in my kitchen with the magazine on the counter and read while Wren napped on the floor and Sammy napped against my chest in his Moby wrap. My brain was in a fog; I was quarantined in the house with a three month old and a two year old, and I was exhausted. Very few things were able to grab my attention at that point, but this article grabbed me. I started reading the symptoms of neuroblastoma, a cancer that preys on children and usually isn’t detected until it’s at stage four. I stopped cold and felt a lump in my throat. I turned to look at my two year old daughter sleeping peacefully on the floor, and fear that I may have made the biggest of mistake of my life washed over my brain.
In the previous months, Wren’s stomach had started pooching out. She basically had a beer gut for toddlers. It was cute, and most kids have one to a certain extent. However, Wren’s was getting bigger. In my half asleep, still recovering from a c-section, never not holding, feeding, or changing a child state of mind, I didn’t think too much about it. Dennis did. He asked me why Wren’s stomach looked like she was starving, like those kids on the commercials where they ask you to send money to feed them. I joked saying, “Do you want to ask friends and family to send a dollar to the Feed-A-Wren Foundation? Seriously, I’m with her all day and I never stop feeding the child.”
That probably should have been a sign, but my understanding was that toddlers just ate often. And Wren always woke to nurse when I breastfed her, always needed some sort of food in her hand to be happy. I thought she just had a high metabolism. The doctors never thought it was weird. But for my husband’s sake I asked at Wren’s next appointment. There are three doctors in the practice she goes to, and we got the new one on this particular day. He asked if Wren was pooping. Yes. He asked if she had stomach aches. No. He declared her okay except that she had fallen off the weight chart. He attributed that to the emotional breakdown she suffered during Sammy’s hospitalization, the breakdown that landed her in the doctor’s office several times in 10 days, and took weeks for her to pull out of.
Months passed, the stomach stayed bloated, then I came across the article about Sierra. One major sign of neuroblastoma: a distended stomach. A large, I believe tennis ball sized, tumor was hiding behind Sierra’s stomach. Oh, God, I thought. I really screwed up.
I called the doctor back, made an appointment with a different doctor, our usual one in the practice, and took Wren in the next day.
Now, despite my immediate concerns, I had no idea how to walk into a pediatrician’s office and explain that I thought my child had cancer because I had read a magazine article and then surfed the internet while I should have been sleeping. I know doctors hate this. But I was not walking out of that room without saying cancer and my child in the same sentence because I needed someone to tell me what was going on. So I sheepishly explained about Wren’s stomach, the article I read, the fact that it wasn’t getting better. The doctor didn’t laugh. She asked Wren if she could see her belly button and then tickled her while she felt the huge ball that was now my child’s abdomen. After several minutes she said, “Mom, I don’t think it’s a tumor.” I breathed for the first time since I made the appointment. I waited for the inevitable lecture about not self diagnosing your kids because of the years it shaves off your life. However, that’s not what came next. The next thing she said was that it wasn’t normal and that we needed to start food allergy testing and stool testing ASAP. This led to weeks of insanity before Wren was diagnosed with Celiac disease.
Celiac is not cancer. Celiac is a disorder where the sufferer has to avoid eating gluten because it poisons their bodies. It’s a chronic autoimmune disorder that can only be managed through diet, and it can never be cured. It’s neither the best or worst diagnosis you can hear for your two year old. There are severe consequences for not following a gluten free diet if you have Celiac, such as increased risk of bone loss, diabetes, cancer, infertility, other auto immune disorders, other diseases in general because of an unhealthy gut, and death, usually caused by one of the other conditions it causes . Finding it early is the best thing that can possibly happen to a Celiac sufferer. Just ask my husband who was diagnosed a week ago at almost 30 years old. Wren was actually very blessed to be diagnosed at two.
However, I doubt she would have been if not for Gen and Sierra. I am overwhelmed that a life that lasted only two and a half years has impacted my family for the rest of our lives. I am also shocked at the selflessness of a mother who, in her mourning, was still thinking about helping other people’s kids.
I am selfish. I am not saying this so people will come back and say I’m not, or that that’s not true, or that I’m one of the most unselfish people they know. If I am one of the most unselfish people you know, then you hang around a bunch of jackasses. I’m saying it because when my son stopped breathing in my arms twice, or when we realized we were feeding my daughter every two hours because she was actually starving, I did not give a damn about anybody but myself and the people in my immediate family. I have pretty much been living that way for the last year. It’s been survival, but it’s been selfish.
During this time I have thought about Gen and Sierra. I’ve wondered what would have happened if Gen hadn’t started Sierra’s foundation, hadn’t allowed herself to be interviewed for that article. Would we be finding out about Wren’s Celiac after she developed intestinal cancer? After she had diabetes? After her body started showing signs of malnutrition(her gut was showing severe signs, but the rest of her body hadn’t caught up yet)? Thanks to these two, I won’t have to find out. Gen is the best kind of mother. She’s not just a mother to her children; she is a mother to everyone's children. Because of her, I've realized I cannot live in a shell without community, without caring about the hurt of others. I aspire to possess her strength daily.
So, I am going to attempt to blog again. This blog will not be defined by Celiac, as we are so much more than this funky condition(by we I mean all of us as Sammy and I are also believed to have it and live as if we do. Testing is pending based on several factors which I’ll go into another time). However, Celiac is a big part of our existence now, and we can’t change that. If anything I happen to post helps someone else, I feel blessed. Understand I’m not a doctor, a nutritionist, or even sane most days. If I had to write a book about our lives right now it would be titled, I don’t know what the hell is going on and what’s for dinner? But, if anything, maybe others can avoid some of the mistakes we’ve made, be encouraged about nutrition, or laugh when they read about me cutting my own hair off with a pair of dull scissors(I was serious about the not being sane part).
I’ll try to be consistent in my blogs, but all I can guarantee is that I’ll try to be real to wherever we are the moment I’m writing them. I’m hoping to stop making excuses about time. That’s not my real reason for not blogging most days. My real reason is selfishness. It’s not like I think my little blog changes the world, but I know we have done a ton of research that someone can benefit from. I keep telling myself there are millions of blogs that deal with Celiac, and this one will not be totally dedicated to that. Why should I put myself out there? However, it was Gen’s article I ran across when Wren was sick, not one of the many other sources about childhood cancer. I keep coming back to that.
Please check out Sierra’s foundation at http://www.sierrarayn.org/home/. Maybe give up your morning coffee for a couple of days and donate to this amazing foundation. I hope one day to be as brave and giving as Sierra and Gen. Right now, I’m just a mom in progress.