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?!