Having fun with gluten

On Tuesday, I started eating gluten free.  I want to try it for 30 days to see if it helps my stomach issues or not.  Even though my bloodwork results came back negative, I have yet to do an endoscopy to confirm if I have Celiac or not.  The bloodwork is only so accurate.  If I feel better (which so far I have), I am just going to make the assumption I am.  There no need to have an expensive procedure done on my stomach to prove it.  The main reason we did it with Natalie was so we could show her if she questions why she needs to eat gluten free when she gets older.

I can tell you this though, finding enough variety in gluten free foods is much easier for a two year old then a 30 year old.  My change will force Gina and I to start exploring our recipes more which is probably a good thing.  There is plenty out there, we just need to get more adventurous with it.

However, this is not the main reason I am writing.

Has anyone happened to look at food labels closer since everything happened with Natalie?  If not, I wanted to show you how things are changing.  It's still a difficult process to know what is and isn't OK to eat, but things are slowly getting easier.  Here's an article from the Mayo Clinic last year about how labels are changing in 2008.  The top eight allergens are/will soon be spelled out on almost all foods regulated by the FDA. 

The food allergens

While food labels don't include every possible allergen, they do list the top eight, which account for 90 percent of all documented food allergies:

• Milk
• Eggs
• Peanuts
• Tree nuts (such as almonds, cashews, walnuts)
• Fish (such as bass, cod, flounder)
• Shellfish (such as crab, lobster, shrimp)
• Soy
• Wheat

Wheat is in the top eight, which helps us out some as it eliminates anything with wheat right away.  Gluten, which would easily be in the top eight, is not because it is an intolerance and not an allegen.  If wheat is not on the label it does not necessarily mean that the food is gluten free.

If you read the article you will see that the FDA is still trying to do things to help us read labels for gluten as well.  You wouldn't believe all the products with natural flavor, artificial flavor and modified food starch alone that we need to question (by calling, e-mailing, visiting websites, etc.). 

Here is a sample of the new labeling scheme.  See the "contains" section at the bottom of the label.  It's very nice.

As I was saying above, if you also look closely at the ingredients in Baked Cheetos you will see that natural flavor and artificial flavor are listed meaning that we would still need to question this product if we did not already know it was OK.

Gina and I (with help from Molly) will be maintaining a list ourselves of all the items we have looking into and the answers we get for those products.  Here is the link.  We haven't done much work with it yet.  To this point we have mainly referred to lists others have built already since Nattie's diet is not that diverse right now.  We will definitely be looking into things more in the near future though.

Nattie's tranformation continues to amaze us.  We are grateful to have found out when we did without her having to suffer any longer.  The fact that she accepts when she can't eat something without too much questioning has been a blessing as well.

I just wanted to give an update on how things are going.

We're starting a revolution!

Before I start, I'd like to say that for more background on the situation, see Gina's last two posts: Puke-O-Rama! and Three Days and Counting.

A couple of tests are still pending, but it looks overwhelming like Natalie has celiac disease (pronounced sē′ lē ak′).

Never heard of it before? Me either. Though, I have read that up to 1% of the U.S. population has it (3 million) and that approximately 97% of those cases are undiagnosed.

What does this mean? Nattie has a gluten intolerance (which is found in all wheats, ryes, barleys and usually oats).

Her doctor has asked us to start her on a gluten free diet immediately.

After looking into things, I'd compare having a gluten intolerance to having a peanut allergy (but thankfully without the epi pen or 911 on speed dial). The attention to detail and investment in time to read labels and understand the background of companies making the products is critical.

Is celiac life altering? Absolutely. Is it life threatening? Not likely.

The main organ at risk is the small intestine. Over time, considerable damage can be done to it if the proper changes aren't made. The good news is that the small intestine does heal completely if a gluten free lifestyle is attained (and then continued).

The list of foods that she is no longer allowed the have is quite extensive. Around 75%+ of the food in our house is unavailable to her. Here's the list of ingredients she needs to avoid, etc.

Which of these items do you think contains (or may contain) gluten:

*most milks, aged cheeses, seafood, poultry, peanut butter, eggs, fruits, vegetables, butter, jello, tea, wines, black coffee, ketchup, salt, pepper, cinnamon, etc.

*yogurt, chocolate milk, hot dog, bologna, hamburger, salad dressings, mayonnaise, baked beans, pickles, chocolate, chewing gum, tomato sauce, maple syrup, flavored coffee, canned soups, any type of medicine, etc.

*beer, meatloaf, pizza, ravioli, bread, buns, most cereals, licorice, pasta, waffles/pancakes, mac 'n cheese, speghetti o's, pretzels, gravy, ice cream cones, etc.

The answer is that the first list does not contain gluten, the second may contain gluten (see label reading statement above) and the last list definitely contains gluten.

After doing some research, a gluten free diet is spendy but is much easier to deal with today then it was even a couple of years ago. Not only are there places like Trader Joe's which make gluten free food reasonably priced (though terribly inaccessible to a south metro resident), but it's even being put on labels of food now (though not FDA approved yet). We will be buying a breadmaker and will be making much of the food we eat from scratch. I am looking into what books we will be adding to our library as well. I've already decided that Shelley Case's Gluten Free Diet: A Comprehensive Resource Guide will be for sure.

Another interesting factor in this all is that either Gina or I passed the gene to her and it's possible Macie has the same condition.

Let's see, Gina has a good stomach and I definitely don't. Neither does my dad. His dad, bad stomach too. Who do you think is carrying the gene? Gina's family has some of the traits associated to this disease but they're not resigned specially to one side of her family making me think that it's not her.

Based on the list of symptoms, I'm fully expecting to be diagnosed with it as well and will need to follow the same guidelines as Nattie does.

If this holds true, I can't tell you how much it will break me heart to look at Nattie and know that I caused this.

Once we confirm who the carrier is we will need to go back through their family tree and suggest that those who may be at risk be tested.

We will also be seeing a nutritionist in early February to help us make the conversion as smooth as possible.
While all this is very unfortunate, it could be a lot worse. The first couple of months are going to be quite an adjustment but after that it will just be a way of life.

And...

I am glad that we potentially have answers to many of Nattie's recent issues.