Just Heather

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)!

2 Responses to “Diseased”

  1. I am glad you are achieving great progress through your gluten-elimination program. I also feel so much better now that gluten has been removed from my life. It took quite some time to get past having doctors tell me it was everything BUT Celiac (nobody even thought of that one until I started the elimination process myself).

    Also, I hope you don’t mind me adding your blog feed to my gluten-free and celiac news-aggregator so my readers can quickly see and link to your latest postings:


  2. Heather,

    Glad you caught it! Have you discussed which parent this might come from? It might prove an interesting study as I’m betting Dawn has a similar problem.

    Glad you are all healthier, but I’m sorry about the rolls!