She Says… Sweet Reward

Remember Owen’s recurring issue of not always being so gentle with his friends (aka the not terribly uncommon phenomenon of my generally well-mannered child attacking his friends)? And that simple little sticker chart we instituted for successful school days without an altercation?

Well, it worked beautifully. Stickers are an amazing motivator for 2 year olds. Or, my two year old, at least.

Owen was SO PROUD when he asked his teachers at the end of the day, “Do I get a sticker?” and he knew the answer when he had a little lapse in  memory and forgot what “gentle hands” really meant. The last month or so wasn’t perfect, but the chart and the promise of a sticker was a very strong motivator for good behavior.

As we got closer to the end, Benjamin and I made a big deal of saying, “Oh, the chart is almost filled! When you get to the end you’ll get a really special treat.”. We had no idea how long it would take him to fill up the chart, and really had no special treat in mind, but I figured I’d play it by ear and let Owen help pick the reward. As the chart filled up, Owen would guess, “I think it’s an airplane” or “It’s a bear. Is it a bear?”. Adorable.

To be honest, he has enough toys and I do my best to limit crap accrual, so when he finally filled the chart, I gave him a choice. We could take a walk to our local toy store and pick out a small toy OR we could go out for ice cream. His choice.

The fact that he chose ice cream so quickly and with such glee just goes to show you how rare treats like that are around here   I was so glad that was his choice… I was craving some myself!

So last Saturday we headed to the local Pinkberry for a celebrating of gentle hands. Now before you get all up on my case for giving him the “healthy” ice cream instead of a splurge, it was based largely on the fact that Pinkberry frozen yogurt (and most soft-serve that comes out of a dispenser rather than a carton) is gluten free. As are many of the toppings. Due to Benjamin’s (and possibly Owen’s) celiac disease, getting ice cream scooped at a normal ice cream place is a breeding ground for cross contamination (if the scooper touches a cone and then goes in the ice cream carton, or touches a kind of ice cream with gluten in it, there is a good chance there’s gluten getting in our order, even if we order a gluten-free ice cream flavor and a cup). And I knew how much he would love choosing his toppings (and they use separate spoons for every topping, so although the risk of cross-contamination with toppings still exists, I felt comfortable letting him pick fruit or M&Ms as his toppings).

It was AWESOME.

He had a blast. And savored every bite of that delicious ice cream. As did Benjamin and I.

So now the question is… do we start another sticker chart or has it done its job? The jury is still out. He still needs some reminders about using gentle hands at school (and the last few days his teeth have been bothering him as his 3 year molars are coming in and he’s been threatening to bite again — ugh!), but I don’t want to over-do the sticker thing. I also want to reserve the next sticker chart for our big boy bed transition and any “bad” behaviors that may come from that transition.

She Says… A Delicious Thanksgiving, With or Without Gluten

Given that Benjamin’s celiac diagnosis came right before Thanksgiving, I had to quickly come up with a gluten-free Plan B for almost every dish I usually make for the big day. We hosted 11 adults and 3 kids, and only 3 out of the 14 were gluten free. But still,  it was really important to me that everyone was able to eat [almost!] everything, and no one got unintentionally glutened in the process. Not the easiest task, but certainly easier to do at MY house than at someone else’s.

We have gone back and forth spending Thanksgiving with Benjamin’s family or with my family. This year, we got a little of both (though not all of either — too many families, too little time!).

My brother and sister-in-law, their two kids (Tori, almost 2, and James, 4 months), and their dog Charlie drove up from Philly to spend a few days with us. I was so happy to see them and to have some of my family represented at the Thanksgiving table! As I said in my last post, we had a blast while they were here, showing them our favorite playgrounds and pulling all of Owen’s toys out of the cabinets.

On Thursday afternoon, some of Benjamin’s family joined us for Turkey Day. I supplied the turkey, stuffing, rolls and cranberry sauce, and others brought vegetable side dishes. This worked out so well for the gluten issue — they didn’t have to adjust their dishes since things like mashed potatoes, butternut squash and peas don’t have gluten anyway. We even made gravy from the turkey drippings with gluten free flour and no one noticed the difference!

The pie baker in the family was even up for trying a gluten free pie crust so the non-gluten eaters even had their very own pumpkin pie. I don’t know how she did it, but man, it was delicious!

Turkey: I was surprised to see that several of the turkeys available at my grocery store were pre-brined or flavored with things like “artificial flavoring” (even the organic ones!!!), which often is wheat-based. Thankfully I found one brand that had a big “gluten free” icon on it and was able to find a perfect 20 pounder to take home. We prepared it according to our recent family tradition (started last year — side note: Owen looks like such a baby in the pics from last year!) of wrapping it in bacon. It doesn’t get much more delicious than that.

Stuffing: I vaguely followed this recipe for Apple & Onion Stuffin’ Muffins for both my gluten and gluten-free stuffing. I sauteed a ton of onions, celery, apples and spices. Then I kept my two bowls of bread separate, split the sauteed veggies and apples between them, and then added gluten-free chicken broth until they were the right texture to bake. For gluten stuffing I just used a bag of good ol’ Pepperidge Farm stuffing mix, and for the gluten free stuffing I made a batch of homemade French bread and dried it out. Both were delicious, if I do say so myself.

Rolls: Easy peasy bake ‘n serve rolls for the gluten-eaters, and from-a-box gluten-free cornbread muffins for the gluten-free. Hey, gotta cut corners when you’ve got so much going on in the kitchen!

Cranberry sauce: I like a tart chutney rather than a jellied cylinder, so I make my own by throwing a bag of cranberries, a washed but unpeeled orange (sliced into quarters) and a little bit of sugar to taste in the food processor. I could eat it with a spoon it’s so delicious. And believe me, I did.

We had so many leftovers I’m STILL eating turkey with all the fixins for almost every meal. Tomorrow is my cut-off, though. Whatever’s left goes in the trash and I have to return from my turkey-infused haze back to the real world!

She Says… Celiac Update

I’m not sure how many of you are actually interested in the nitty gritty of Benjamin’s celiac diagnosis (and Owen’s likely diagnosis, though we haven’t done the blood test yet to be sure), but I wanted to keep some notes here for others dealing with this disease and other food allergies. I also want to spread awareness — there is a lot of bad information out there about the hows and whys of being gluten free, and now that my family is in that boat I realize just how vital it is that everyone understand what the diagnosis means and what we can do to treat it.

First things first, there is a difference between a wheat allergy, a gluten sensitivity, and celiac disease.

Celiac Disease: Celiac disease is an autoimmune disorder where the body reacts to gluten by attacking itself and causing damage to the small intestine. This inflammation of the lining of the small intestine leads to malnutrition (due to the inability to absorb vitamins) and puts celiacs at a much higher risk for many issues like other autoimmune disorders, cancers, and even pneumonia. In addition, many celiacs have violent physical reactions to coming into contact with gluten, even the tiniest amount.

Gluten Sensitivity: An individual has undesirable symptoms when he/she eats gluten (fatigue, indigestion, constipation/diarrhea, gas, etc.), but does not have celiac disease. Although bothersome, there is no inflammation or damage to the intestine. Some people with gluten sensitivity can have very extreme physical responses to the tiniest amount of gluten, while some responses are quite minor.

Wheat Allergy: The body launches an exaggerated response to wheat proteins (which may show up as a rash/hives, wheezing, swelling, etc.) but the damage to the small intestine is mild.

Benjamin’s blood tests confirmed the celiac diagnosis and an endoscopy (where he swallowed a camera so they could see the inside of his intestines) was done to see the extent of the damage to his intestinal villi. This procedure and the biopsies they took indicated that Benjamin has extremely damaged villi — they were worn down completely, whereas healthy villi stick up like little tiny fingers. That means we have to take immediate and extreme action to eliminate all gluten from his diet.

At first I thought, “Oh, that won’t be that hard, since Owen already eats gluten free. There are gluten free versions of everything. You’ll be fine.”. But what I didn’t realize is that it’s not just about the obvious sources of gluten like flour, cereal and bread. It’s not even about hidden sources of gluten like in marinades and soy sauce and some flavored yogurts. It’s not even just about reading labels like “produced in a facility that also processes wheat”. We have to be extremely aware of cross-contamination too. That means getting rid of every sponge, plastic utensil and tupperware in our kitchen because they likely have gluten proteins on them. It means getting rid of every nonstick pan because the nonstick coating is porous and may be harboring gluten proteins. It means new baking sheets and even a new toaster. It means reading every label in our pantry and getting rid of, well, almost everything. It means questioning and Googling every brand and every ingredient before taking it off the grocery store shelf. It even means changing chapsticks and shampoos and hand lotions.

Phew. It’s a lot.

We did a major kitchen cleanout and got all new nonstick pans, kitchen tools and baking sheets over the weekend. We reorganized our cabinets and removed all products with even the smallest trace of gluten in them (except for a few boxes of cereal and some granola bars for me — those I can keep relatively contained and I fear that I can’t live without them!).

The great news is that while celiac disease can’t be cured, you can literally regenerate the intestinal villi and essentially reverse ALL of the symptoms and increased likelihood of developing future issues by sticking to a strict gluten free lifestyle. Unfortunately, unlike those with gluten sensitivity, Benjamin will never be able to “cheat” once in awhile or risk being glutened. If he’s not sure about a particular food at a restaurant, he can’t eat it. Bottom line.

Benjamin and I are both struggling with his diagnosis. He is mourning food he’ll never eat and the crazy things he’ll need to do before he can eat out in public again. I am mourning having to write a 10 page email when someone invites us over for dinner, and not being able to bake homemade bread (yes, yes, I know there are gluten free flour blends and mixes, but they are NOT THE SAME). But we’ll get through it, and then it will just be… life.

 

So… anyone want to invite us over for dinner?

She Says… Double Diagnosis

Remember when we FINALLY figured out that Owen’s eczema (and likely a lot of his breastfeeding issues) was related to a wheat sensitivity/allergy? Since he was 8 or 9 months old we have kept Owen gluten free and so many of his health issues have disappeared. Despite the fact that we thought maybe he would grow out of it as he grew up, every time that we have re-tested wheat back into his diet (under direction from his doctor), his rash/ear infections/other illnesses have returned. It’s so clear to me that there is a link here, even though it hasn’t been confirmed by blood tests or extensive allergy testing. That’s enough for me.

Still, Benjamin and I were somewhat confused at the diagnosis because neither of us have any food allergies (Benjamin has developed oral allergy syndrome late in life, but that’s just a minor reaction, likely related to his seasonal allergies). But, I figure they have to start somewhere. And even if we never know “where it came from”, it’s there. Which, again, is enough for me.

Fast forward to this past April. Benjamin started having extreme stomach pains, tenderness and bloating. At first I thought he was just complaining (which, as a self-proclaimed hypochondriac, he has a tendency to do…), but the pain persisted for weeks. He saw several different doctors, had blood tests, a urinalysis and an ultrasound done, but still, no solid diagnosis. It began to feel like even the doctors thought he was imagining it. The stomach pain spread to back pain and even materialized as testicular pain, leading him to new doctors to rule out [very scary] things like testicular cancer. Finally, a blood test came back with a marker than indicated celiac disease. After a few more appointments, seeking out a celiac specialist (thank goodness for living so close to some of the top medical institutions in the country, including Beth Israel, which is one of the only hospitals in the world with a Celiac Center) and an endoscopy, the diagnosis is now confirmed.

Benjamin has celiac disease, an autoimmune disorder characterized by a damaged intestinal lining that can lead to serious health issues if a strict gluten free diet is not adhered to. The endoscopy showed that his intestinal lining is pretty severely damaged, despite the fact that he hasn’t had any poop issues or other common celiac symptoms. If we hadn’t persisted with the doctors for these vague stomach pains, we never would have found out.

We had been testing out a gluten free/dairy free diet for Benjamin for several months while he saw the multitude of doctors, since I am a firm believer in the impact of diet on our bodies and suggested he try it. As it turned out, my instincts were right again. And, given Owen’s experiences with wheat, Benjamin’s diagnosis almost doesn’t surprise me. I say almost, because I’m still totally amazed at how acutely the symptoms materialized, and how extreme they were, despite the fact that he has eaten gluten his whole life with no issues.

Since we already keep Owen gluten free, I am pretty familiar with what the good products are, how to bake muffins and breads, and what I can and can’t make for him. However, we often “cheat” a little with him (using soy sauce, for instance, or a marinade with a wheat-based ingredient in it) because he is able to tolerate very small amounts of wheat with no symptoms.

With Benjamin’s celiac diagnosis, though, there can’t be any more cheating. For him, it’s not the symptoms (in fact, even when staying gluten free, his stomach pains still come and go) that are the problem. It’s the invisible and undetectable damage to his intestinal lining. “Cheating” now means permanently damaging his body and increasing his chances of cancer, malabsorption of vitamins, other autoimmune disorders, liver disease, and on and on.

Given that 1st degree family members of celiacs have a higher likelihood of having the disease, I am going to conservatively assume that Owen has celiac and work to make our house 100% gluten free (perhaps later in life we will get him blood tested and even do an endoscopy to see how damaged his intestines are). I’ll still eat some granola bars and boxed cereals with gluten, but in general, this won’t be a huge shift for us, given that we’re already more than halfway there. I feel so thankful that we know this now so that Owen has the potential to escape the serious health implications of this disease through a strict gluten free diet for the rest of his life.

So, any fellow celiacs out there? How strict are you about sharing dishes – do you have a strictly gluten free set of pots and pans, baking dishes? What about things like butter and peanut butter – do you have a separate one for knives that touch gluten? What do you say at restaurants or when friends invite you over for dinner so they understand the severity and what it means? Where is the strangest place you’ve ever found wheat/gluten? Just this morning we realized our multivitamins had gluten and we need to find a different kind. Thankfully we eat very little processed food so I’m very in control of the ingredients we use, but things like vitamins and shredded cheese were not even on my radar before this diagnosis.