Family Vacation - Celiac Style

Well, we did it.  We went on a family vacation and even survived unglutened!  A week ago, I wasn’t so sure how we'd pull it off. How do you fly to the middle of nowhere (…really! Maui…just an island in the middle of the Pacific Ocean,  far from all the new reliable sources and support we’ve developed…) and make sure your kid will be fine? Well, first it went without saying that we’d be doing a lot more cooking in than usual on this vacation.  We were staying in a condo where we had access to a refrigerator and microwave.  Funny thing is we made these plans BEFORE our son’s diagnosis, so we didn’t check the kitchen out the way we would now.  Oven? Toaster? Scratched non-stick pans?

As always, the internet was our friend.  Lots of celiacs had passed this way and shared so much helpful information.  We had some excellent places to shop.  Whole Foods has added a location near the airport in Kahului.  Mana Foods in Paia is a sensitive eater’s paradise.  I wish we had one near our home! Even the Safeway in Lahaina was better labeled and had more options than my local Safeway. And some blogs identified a couple of restaurants as likely options.

To tell the truth, restaurants still have me scared.  Even when they have a gluten free menu, it’s hard to feel comfortable when they repeatedly offer your table a bread basket.  The good news is that my son did not have any noticeable reactions to the two places we visited. Mama’s Fish House and Outback Steakhouse were both accommodating and supportive.  Since we’ve gone gluten free as a family, it makes things a little easier. And several places were kind enough to let a Fumbling Mom read labels on ice cream, drinks and other food items to make me feel more secure about what we offering my son.

In the condo, we cooked GF pasta.  We ate GF cereal.  We scrambled more eggs than usual. We enjoyed some great island fruits.  All in all, Maui truly is paradise.  And, while maybe the food we cooked in the microwave wasn’t the best ever, the breaching humpback whales made up for it all! Aloha and mahalo!

Super Bowl Party - Celiac Style

Hey, it’s Super Bowl weekend.  We usually have some friends over for chips, dips, chili dogs and all sorts of wicked stadium food that we only do for the Big Game.  This year things need to change. I’ve been digging around for some gluten free ideas that won’t seem like such a sacrifice. I don’t see doing hot dogs without buns.  That’s just not right!

After some research, fajitas were looking pretty good.  Sauted chicken breasts and grilled flank steak, bell peppers and onions, cheese – all on corn tortillas.  And how about corn chips with salsa and guacamole?  I think we can do this!  Add some gluten free potato chips and some sodas, and we’ve got game time!

And yet, when I consulted my son, he really wanted the traditional fare.  So we just modified the norm. We checked (and re-checked) all the products, ending up with some yummy Aidell’s Chicken Apple Sausage and Arthichoke Garlic Sausage (both labeled GF).  To avoid the bun issue, we just cut them into bite-sized pieces with toothpicks.  We also did Stagg Chili* Classic Chili with Beans (Fumbling Mom Product of the Day)– souped up with extra beef, herbs, spices and cocoa – for nacho chili bowls.  I even made Velveeta cheese dip, something I haven’t even SEEN since I grew up in the south. With M&M’s and chips, we were set.

Unfortunately, today - on the day after - my son’s stomach doesn’t feel all that well. With a day of food choices like that I usually just say, "What a surprise!"  (maybe with a hint of sarcasm.)  But this year I have to ask a few more questions. Did we stay gluten free? I feel pretty good that we did. Could it simply be Super Bowl excess? I hope so.

*Not all Stagg Chilis are gluten free, so be careful to check the label.  This one is actually labeled GF, but we had some trial and error in the shopping process.

What's for Lunch?

So, breakfast is a little challenging.  Dinner is easy.  Lunch feels impossible.  Our 12 year old like lots of different foods from crab and clams to broccoli and red bell pepper.  But he seems to dislike almost anything that would be easy to send for a gluten free school lunch.  He’s not much of a sandwich kid.  He doesn’t like salads or leftovers.  He doesn’t snack on cheese, yogurt or hard boiled eggs, like he did when he was a toddler. Let’s see…what’s left?  There’s no way to heat things at school and he doesn’t want to carry a thermos.  So, we’re struggling with this one.

I found a website with a lot of ideas that we are working through.

 http://glutenfree.wordpress.com/2008/08/21/gluten-free-lunch-to-go-ideas-for-what-to-pack/

So far, here are a few things we’ve had success with (note the list is mighty short!):

GF Peanut Butter and Jelly sandwich

Sushi (with GF soy)

Leftover GF pizza

Any kind of fruit

GF potato chips and any gf cookie

Corn tortilla quesadilla

What hasn’t worked:

Rice noodle spring rolls with vegies and pork

Ham sandwich

Amy’s GF burrito (mom liked, tho)

Taco meat with corn chips (nachos)

Yogurt

Things I want to try:

Simple melted cheese and corn chip nachos

Hummus dip with vegies

Pasta salad with chicken or tuna

Corn tortilla roll ups (meat, veg + something wet – GF ranch dressing, hummus)

Fajitas

Kabobs – meat and fruit

Our approach toward many of the food challenges we are facing is to try to keep an open mind.  My son may have tried something before and not really liked it, but he needs to check it out again.  I tell him this is just a good idea anyway…because tastes change.  Like the way he loves mushrooms now.  Hated ‘em when he was younger.

We’re also having conversations about what works and what doesn’t in his lunch. I have always suggested that he bring home (rather than throwing it away) anything he doesn’t like at lunch.  It’s the best feedback I can get. And I keep reminding him that there are also different brands of GF products.  If something doesn’t work, we’ll keep trying until we find a good one.

I look forward to sharing more of what works and how inventive we get.  With five school lunches a week, we’ve got to get this nailed…and fast.  Otherwise, Mom will go crazy.

Fumbling Mom Product of the Day:  See’s Candy

What makes a 12 year old feel more normal than chocolate?? When I checked with See’s, they told me they’d gone gluten free in 2009.  What a pleasant surprise.  The only exception to GF is some of the decorations on their seasonal candies, so remember: Read the labels and ask questions!

Good news!

What a crazy week…but good.  We heard back on the MRI and my son’s brain looks fine.  Turns out they could see a sinus infection that is the likely cause of his headaches.  We will start a regimen of antibiotics for the infection, since we all suspect it’s an infection he didn’t conquer 5 months ago.  It’s strange to realize we are fighting on two fronts.  The first front is the celiac issue and the second is the headaches.  We assumed they were connected, but imagine my relief to find that simple antibiotics might take care of one of our problem.  If only celiac were as easy!

So, my kid is reporting that his stomach is feeling better.  He reports a 2 out of 10 for discomfort level.  It’s been two months since he’s felt this well stomach-wise, so I am quietly celebrating.  His baby steps with the new GF diet, only two weeks strong, might be making progress.  While I still lack the confidence that we are as perfect as we need to be on the diet, we are certainly trying.

One saboteur – chewing gum.  In middle school, it’s a big deal to share pieces of gum with friends.  There are so many question marks with this product and there are so many questionable sources for different types of gum! Even after talking with a representative with such a respected and hopefully reliable source as Wrigley’s, I am not totally confident about their product based on the answer I received by telephone.  They say they have no gluten containing ingredients in their product.  Why not say “gluten free”?  Makes me wonder about the manufacturing environment and cross contamination again.  There’s a lot of info on www.celiac.com  about gum so I am hoping that we can count on the collective knowledge along with a call to the manufacturer to be sure we get things right.  I am telling my son how important it is not to undermine his herculean efforts on diet by accepting unknown candies and gums from friends at school.  It’s pretty hard to believe I am saying things like this to him, but I need him to understand the choices he has to face going forward.

Another good news note, we had a great GF pasta dish tonight, so I thought we’d share the product and a little recipe.  Since we’re newbies, I welcome feedback if you see any problems below.  We’ve mostly been eating simple things, but we were all getting hungry for some pasta.

Recipe: Sausage Noodle Bake

One jar of Classico Pasta GF sauce (your choice of flavor)

12 oz. package of Bionature rigatoni GF pasta  (surprisingly good!) Fumbling Mom Product of the Day

One onion, chopped

2 cloves garlic, minced

3 Jennie O Italian sausages, casings removed, chopped (used a mix of sweet and hot sausage)

1 c. sliced mushrooms, sautéed and deglazed with wine or sherry.

1 c. tomato sauce

½ c. mascarpone cheese

2 oz. Gallo salami chopped.

8 oz. fresh mozzarella, cut to large bite size

2 oz. grated mozzarella

¼ c. parmesan

Dried or fresh basil, to taste

Cook pasta according to package directions.  While pasta cooks, sauté mushrooms in a splash of olive oil until browned.  Remove with slotted spoon to a large stainless bowl. (You will use this bowl for mixing all the ingredients later.)  Add a bit more olive oil and saute Italian sausage until browned. Remove from pan with slotted spoon (I put it on paper towels to absorb excess fat).

Pour off excess fat from the sauté pan.  Add another tablespoon of olive oil and sauté onions until golden.  Add garlic. Deglaze pan with just enough broth, wine or water to get up the brown bits and flavor from the sausage and mushrooms. Add in the tomato sauce and Classico.  Simmer for 10 minutes.

Combine pasta with mushrooms, sausage, salami and fresh mozzarella.  Stir mascarpone into sauce until blended.  Mix with pasta.  Turn into baking dish, top with grated mozzarella and parmesan. Sprinkle with basil and bake covered for 20 - 30 minutes at 350 degrees until bubbly, taking the cover off for the last five minutes to melt and brown the cheese.  Yummy!

Gluten Free Perfection

The world of Gluten Free is harsh. Individual levels of sensitivity to gluten vary, but the general rule if you are a celiac is “none is good” and more than that, very questionable.

At first, I felt overwhelmed by all the new things I’d need to learn to be able to cook for our newly diagnosed celiac son.  After I read a bit, given that I am a regular home cook, I thought I was up to the challenge.  I knew I could simplify my cooking and ingredients to comply with gluten free needs. What if I just cook chicken, pork or fish?  I can add gluten free sides and some healthy vegies.  But then I ran up against….THE INGREDIENT LIST. (Dramatic organ music here.)

Turns out things are not so easy.  Once you figure out some of the easy stuff, like that whey is actually a milk product (as in Little Miss Muffet’s curds and whey,) you start to realize how many ingredients you really don’t understand or recognize. And what is “soy lecithin” or “artificial flavoring” anyway????

Every site or posting I have read says we must always read the ingredient list.  This recommendation is easy to understand because product development can change any time, so yes, READ THE LABEL! Even if a list somewhere tells you it is safe.  Read the label. But even before you can understand the label, you may need to do some research on the crazy, ubiquitous ingredients you find.  Here are some of the challenges we’ve run up against so far in our short 4 weeks of coming to terms with my son’s Celiac disease (and anyone chime in here if I am wrong and keep reading those labels!):

Challenging ingredients:

MSG – even though that translates into Monosodium Glutamate, when I asked the blogs, I learned from smarter posters than I that “glutamate” has no relation to gluten. This ingredient seems to be okay.

Soy – Soy beans (edamame)  and oil are okay.  Even soy lecithin and other derivatives are okay…what is NOT okay is soy sauce.  You know, the bottled stuff that’s everywhere.  The stuff we love to shake on sushi or that’s an ingredient you get in most Asian cooking. Soy sauce is bad because it is typically, but not always, fermented with wheat.  Who knew? Soy sauce is in LOTS of products, like salad dressings and some bbq sauces.  The good news is that San-J and Kikkoman have a gluten free soy sauce on the market. They even sell it in take-out size packets if you need it. So you can continue to use the GF version at home, at least.

Barley – This is my most elusive ingredient.  While there is mandated reporting on the known allergens like wheat, egg, soy and dairy, barley is far enough down on the list to miss the mandate.  And weirdly, barley is used in lots of flavorings. Malt vinegar, for example. So, if you have a product with “natural” flavorings and they are derived from barley, they may not cycle up to the level of mandated reporting. You still need to be concerned. Read your ingredients!  And question what you don’t know. One major food company, Sara Lee, told me they never hide gluten containing ingredients in flavorings or spices.  Good to know and, yes, I am keeping a list of these phone calls. I’d never remember all this without taking notes.

“Doesn’t contain gluten ingredients “–  This is a response I got from another major manufacturer. That isn’t quite what I was looking for. What does this mean??  This sounds a little too simple and seems to avoid the issue. Can’t we just say Gluten Free? Is someone hedging bets about how products are manufactured?  I need to know gluten free…not just non-gluten including ingredients.  So, for anyone new to this stuff, cross contamination is quite an issue. 

Other stumpers include maltodextrin, caramel coloring and "wheat-free."  There’s a lot of info on the web about these ingredients.  I encourage you to start learning if you want to consider being gluten free.

So, in our newly gluten free house, we are struggling for that elusive gluten free perfection.  To help along the way, we have adopted two mottos:

Keep it simple. - Grilled meat, steamed vegies and a starch like corn, potatoes or rice always work. When the ingredient list gets long or confusing, it’s just possible you need to put that item back on the shelf or at least do some research.  It’s sad to buy something only to throw it away. Sadder still to unintentionally glutenize.

If in doubt, don’t. – This seems a prudent approach. We have plenty of time to continue to learn about the details of being gluten free, but it’s a shame to defeat so much hard effort to stay GF by eating something questionable.

Fumbling Mom Product of the Day (in addition to GF Soy Sauce)

Glutino GF Chocolate covered Pretzels

Kid Rating            8 (He ate most of the bag during a basketball game!)

Mom Rating       10 – No compromise here! Love that salty, sweet combo.

Diagnosis

As the Grateful Dead said, “what a long, strange trip it’s been!”  And it’s only been a month since getting the phone call that my 12-year old son might be a celiac.  For anyone who doesn’t know (most of us, I presume), Celiac disease is an auto-immune reaction to the gluten in wheat, barley and rye. It is an inherited condition.  This experience has been so crazy that some friends are urging me to blog about it.  If it will help someone else going through this, I am happy to share the ups and downs.

 So, the backstory is similar to the many stories I’ve read in the internet blogs this past month – My son has had stomach aches, headaches, occasional diarrhea, and is in 10^th percentile in weight (75^th in height).  The symptoms were intermittent. He’s outgoing, athletic and mostly full of energy, who knew? I don’t know if parenting gets easier or if the quality of your decisions improves when you have several kids, but with just one, I do know that everything is a new adventure.

So we mentioned the stomach issues to his pediatrician over time during our visits, but it never seemed to be a consistent problem.  A couple of years back, we even had a whole year of not needing to go to the doctor.  Amazing in hindsight.

As his headaches and stomach aches worsened this past fall, our pediatrician kicked things into high gear (with a lot of nudging from mom). When the doctor ordered a blood test, she included the antibody test for celiac just because of the intermittent stomach issues in his file.  What a godsend!  My husband and I don’t know of any family history at all so her expertise and thoroughness really saved the day.  In my frustration with how bad my son felt, I’d even tried taking him gluten free and then dairy free for a couple of days.  We saw no improvement, but I now realize that’s too short a time.  I just thought I’d see some glimmer of improvement trying.  But it also validates that mom instincts are good ones.

When I got the doctor’s call about the blood test results, I was shocked.  I asked if we should do another test…what if it was a false positive?  Do we just immediately jump into such an invasive procedure as an endoscopy for a kid?  Turns out you do! We saw a pediatric gastroenterologist within two weeks.  During out initial visit, he started right into what celiac is and talking about the procedure.  Really? I actually had to back him up to get an explanation of what the blood test results told him. He told us the numbers were high enough to make it relatively certain my son had Celiac disease.  To be honest, even if it was overly optimistic, we’d still hoped that this was all a big mistake.  Pretty darn depressing to hear otherwise.

A big learning and yet another frustration was that you have to keep your kid on the evil gluten until the endoscopy procedure.  It makes sense that the irritant has to be there to be detected, but it’s mighty hard to watch your kid struggle with stomach aches and headaches for two more weeks while waiting.

The endoscopy involved sedation, a hospital and many doctors and nurses asking my son lots of questions. The procedure confirmed Celiac. My son went gluten-free (as much as I can make a sure that things are that perfect – more on this later!) on January 11, 2011.  It’s been two weeks. His stomach ache is just now starting to lessen (we talk scales of 1 to 10. 1 is ‘I feel something” and 10 is “Put me in the hospital.” We are down from 8 to 6 on the stomach ache) but the headaches are still just as bad.  We did a brain MRI two days ago and are hoping for good results.  The headaches could indicate some type of vascular response or calcification in the brain, if I understood the doctor.  Fingers crossed! I don’t even know what that will mean if they find it.

One of the biggest struggles so far is trying to keep some level of normality around eating. Boy, that’s an understatement! I like to cook so dinner at home is easy with meats, a veg and a gluten free starch like potatoes, rice or sweet potatoes. Breakfast is fairly easy, but we are missing some easy, starchy choices like my son’s favorite cereals, biscuits and  donuts. Lunch at school is hard. If it’s not fast, easy to handle and good, it just won’t get eaten. And dinner out is impossible so far. Not a good experience, but I am asking tons of questions at every restaurant we pass. “Take out food” from approved sources is less impossible. We have a couple of restaurants locally that support gluten free eating. (More on all this meal stuff later, too.)

Because of these challenges, we thought we would share a product evaluation and/or recipe each time we write. Did I mention I would be including my son’s viewpoint too?  I figure the mom perspective is important but I KNOW the kid perspective is.  If he won’t eat it, it doesn’t matter how good I think it is! J

Fumbling Mom Product of the day:        

Kinnikinnick Foods K(inni)Toos Vanilla Sandwich Crème Cookies (K-Toos)

Mom rating:       10 of 10 (just because it made my son feel normal to pig out on yummy cookies.)

Kid rating:            10 of 10 – yummy cookies – what could be better?!