NCS, 5 Months Later

So here we are, in the spring. NCS was diagnosed as celiac in early October, and he went totally and completely GF ten minutes later. The following is just a basic rundown of how we've navigated these waters, in case it could possibly help anyone else.

Quick recap: Total cleansing and purging of almost all food and small kitchen appliances/tools. Check. Full brain immersion in all things GF/celiac, including a thorough education on cross contamination. Check. Crash course education of all friends and family members on cross contamination. Check. Boy healed and growing... Check.

We pretty much live our lives in our home as we did before. Our house is absolutely GF, no flour in the house, and nothing that ever touched flour in the house. I cook just as I did before, but now with a wonderful premixed flour blend that I can substitute for regular flour, cup for cup. Easy. The difficulty comes in when we venture out into the world. We still don't eat out very much (maybe three times in five months), and I'm not so sure that will really resume anytime soon. NCS' school has been nothing short of incredibly supportive throughout this journey, and I can't thank them enough for respecting NCS and protecting his health.

I just calculated NCS' growth in height with my ultra scientific measuring device: marks on the kitchen door frame. It seems that he's grown 1.5 inches since October, and I know that he's gone up two sizes in his clothes and probably three in shoes. This can only mean that he has healed, and his body is now celebrating everything he eats with a burst of growth.

Symptom-wise, he hasn't thrown up since he went GF, and he's only had one or two tummy aches, which could certainly be attributed to almost anything else typically ingested by a five year old. And the "celiac belly," think Save-the-Childrenesque bloated Ethiopian belly... gone.

He understands that he has celiac disease, and it means that he can't have anything with gluten in it. He is absolutely amazing in that he assumes that any new food is contaminated, and he asks me or another reliable source ("Mommy, look this up on your phone.") whether or not he can safely eat it. He has a few backup snacks at home and school that he can indulge in when his friends are toasting each other with cupcakes, and we have a freezer full of GF cupcakes, which I have learned are really just a safe, yet labor intensive delivery device for icing and sprinkles.

This is a short list of his approved snacks:

* Fruit (except unwashed strawberries and unpeeled non-organic apples)

* Lays (unflavored) chips: from Stax (like Pringles, but safe) to baked, which he loves

* Vanilla ice cream (we buy Blue Bell, vanilla only)

* Plain popcorn (we pop the kernels at home, don't trust microwave bags or ingredients)

* Xochil corn chips (he likes the blue ones), and I think Tostitos scoops are safe

* Ore Ida french fries and hash browns (haven't checked out the "extra crispy" varieties)

These are some things that we have learned are NOT SAFE:

* unpeeled conventional (non-organic) apples: wax on the skin may contain gluten

* Pringles

* Mission brand corn chips (processed in a facility that also processes wheat)

* Chocolate ice cream (depends on the brand, read labels carefully)

* Frozen yogurt with any "cookie/cake" flavors (cookies & cream, wedding cake, etc.)

* McDonald's fries: rumored to be safe, but THEY CONTAIN WHEAT (also hash browns)

These are the snacks that we usually have on hand, just in case. Lunchbox wise, he primarily eats cantaloupe, bananas, grapes, and Boar's Head turkey/cheese wraps (use the turkey slices as the outside wrapping), plain popcorn. Occasionally, I'll include GF chicken nuggets (either homemade or Ian's), with Chick Fil A Polynesian sauce.

More later,

Whip

Scope Prep, and Scope

The boy had to stay gluten-full until the endoscopy to ensure that we (well, not really all of us, just the nice doctor) could visualize the full extent of the damage within.

You see, if you're not familiar with the mechanism of celiac disease, I'll break it down for you really quick, and I like bullet points:

• It's an autoimmune disease, not just an allergy.
• When the wheat (also rye, barley, spelt) protein gluten is introduced into the gut, the villi, which are tiny little the finger-like projections on the walls of the small intestine are damaged. These are the little guys that ACTUALLY ABSORB THE NUTRIENTS FROM OUR FOOD! Not good.
• I'm going to say this one again: When the villi come into ANY contact with ANY gluten, they get angry and pissed off, and they are damaged. They will now not absorb the good stuff from food.
• To further clarify, not only is there a lack of absorption of nutrients, but you can gather very quickly by looking at my son's distended belly, there is an accompanying inflammatory reaction, which can cause more damage than you can ever dream up. Maybe we'll touch on some of that later.
• So now, since there is compromised absorption, just like if he were malnourished by any other means, the kid can get sick. Like real sick. Like actually worse than not even eating, since now the small intestine is all damaged and irritated. Seriously, like cancer sick. Sick, sick sick.
• The important thing to take away from this bullet point festival is that this can be really, really dangerous.

I decided to go ahead and clean out the house, since the kid is going to have to have something to eat when he wakes up (post-endoscopy). I really had no idea how "contaminated" our kitchen was. I took a picture, but I'm not posting it at this time for two reasons: #1 - I am TOTALLY ashamed of the state of my cabinet (that's right, ONE cabinet.. hopefully upgrading soon) #2 - I don't know how to do it yet.

Do you have any idea how many of our foods have wheat proteins in them? It's quite astonishing.

I gave away food to friends, open boxes of pasta to my son's kindergarten class for art projects, other stuff to food banks, and I even returned a whole bunch of recently purchased dry goods to Publix (thank you!).

And since I mentioned Publix, I have to say that the people that work in our local grocery store are the sweetest, kindest, most helpful people! They all know NCS, and they have gone out of their way to answer my questions and help me out whenever I have questions or concerns. I want to give a special shout-out to Sandy, the deli lady who slices the cheese just right, and the nice curly headed guy who rules over the produce department!

So the morning of the procedure, with a sleepy and very hungry little guy, we set off in search of visual images of his innards. And we got them. Throughout the process, NCS was a sweet, polite, patient little patient. He was brave, and we were so very, very proud of him.

Well, the biopsies (eight) confirmed the diagnosis, celiac disease, once and for all. Here we go.