You have to appreciate the logic that allows a 4-year-old celiac to think it is perfectly acceptable to eat half a package 2 boxes of gluten-filled Girl Scout cookies when no one is looking, but panic hysterically when I try to pack a box of regular (unopened) pasta in the same grocery bag as gluten free food.
After my youngest daughter’s diagnosis last year, I did a lot of research on celiac disease, naturally. I started noticing symptoms that we had taken to our pediatrician(s) numerous times over the course of 9 years, but no one had ever connected them.
It all seems rather disconnected, after all. I would never have guessed that joint pain (diagnosis: growing pains), skin disorders (diagnosis: eczema), behavioral issues (diagnosis: undiscovered after repeated visits with child psychologists, school counselors and doctors) and chronic nasal conditions (diagnosis: allergies, sinusitis, ear infections) were in any way related until I saw them all on one symptom list for the first time.
We made the decision in December to have the girls tested, but they balked at the idea of someone “taking out their blood.” Knowing that testing is unreliable in children anyway, we agreed to try a dietary challenge. The idea was that we would remove gluten from their diet, reintroducing it at 3 separate times over the course of 3 months. By day 5 of our first gluten free week, we were having the most peaceful days in recent memory. The first challenge was an utter failure—with the girls in pain less than an hour after their breakfast toast, in the bathroom all day and hyperactive off the charts by the next afternoon. As that last part could be chalked up to Christmas-mania, we were only looking to the gastrointestinal issues for results.
The end of the second gluten challenge a few weeks later had our oldest daughter begging, “Please don’t make me do the 3rd challenge.” The girls have now been completely gluten free for over 2 months. The few accidents we’ve encountered along the way have only served to prove how right the decision was. They now react to gluten with immediate, obvious, physical signs (especially Brenia)—flushed cheeks, hyperactivity, anger issues and complete exhaustion.
I decided the genes had to come from somewhere and decided to have myself tested. The problem is you are supposed to be eating the equivalent of 4 pieces of bread a day for 2-3 months for accurate readings and I have been pretty “gluten-lite” since Lorelai’s diagnosis. It only made sense to cook one family meal every night so my only source of gluten was lunch here and there. Of course, we all know I’m not patient enough for that so I had the blood test anyway. It came back midway in the normal range, which my doctor said given my recent diet was probably inconclusive. In lieu of additional testing, she suggested I go completely gluten free for 3 months.
I’m starting month two and have shown the same significant improvement as all three girls. I would never have referred to any of my “issues” as symptoms, but now that they are gone it has been life-changing. I have more energy than I can remember having in my life. I am more focused than ever—the house first floor (I’m getting there!) has been cleaner and more organized than ever before. The headaches I have had nearly daily since I was a child are few and far between. I lost 4 pounds in the first 4 days—presumably all water weight as I lost immediate inches. I never realized how bloated I was until it went away and came back again in a rush after a gluten mistake.
While I can’t say I’m truly glad to have a lifelong autoimmune disorder, I am so thrilled to have discovered it. I feel great, my house/life are (fairly) in order for the first time and I am enjoy my children more than ever before. Of course, the absence of their attitude and anger-management issues make that so much easier. All I know is, positive test or not, it’s the gluten-free life for me (and my kids)!
Most of my family is now on a gluten free diet (more on that when I have the time). This is really quite a simple thing since we were already fans of fresh fruit and veggies. I cook a lot from scratch anyway so it was a fairly easy matter of buying different ingredients. It does mean a significant jump in our food budget, but that seems to be balancing out by the fact that we can no longer really eat out.
For one, it’s just not fun anymore. The best part of dinner out is almost always the rolls/bread/biscuits the hostess drops on your table to start your meal. But most importantly, few restaurants seem to know what is even in their food. Even if I didn’t have food intolerance to deal with, that would be scary to me. I can’t begin to tell you how many restaurants—chains, mostly—can’t answer a simple question about the ingredients.
I get excuses about various suppliers, ingredients changing, etc. A lot of the problem seems to be messy kitchens—flour flying, fries mixed with breaded chicken, contaminated knives and cutting boards. Mostly, though, people seem to be clueless. I tend to simplify our issue by saying we are allergic to wheat rather than go into celiac disease and the concept of gluten which is in wheat, barley, rye and malt.
Today, after mentioning the “wheat allergy” to our waitress I ordered each of the girls grilled chicken with no bun. The genius waitress tells me, “Oh, they are just the regular white buns.” Yes, and these are made from those fancy wheat-free white stalks?