To Raise Gluten-free or not Gluten-free?

Being a parent is tough. For me, being a parent while struggling with chronic disease and illness is even harder. But wondering if either of my girls will end up living in a body like mine is heart-wrenching. I watch my oldest daughter very closely. At times, I am positive I see cervical dystonia in her. It destroys me to think she could develop such a painful disease from me.

But that’s not what I want to talk about. Today, I want to share why my children are gluten-free.

Having celiac disease and living gluten-free has taught me three things:

  1. Ingesting even the tiniest amount of gluten will make me sicker than anything!
  2. We live in a society where the focal point of many celebrations and holidays is food.
  3. Food is often used as a reward.

Ponder those last two for a minute.

When my first daughter was born, my husband and I struggled with the idea of keeping her gluten-free from birth. The reason? Several factors go into developing celiac disease. Most relevant for us: a person needs to have the DQ2 and/or DQ8 gene, and the person has to ingest gluten regularly. So if we had genetic testing done, and she did not have either gene, she wouldn’t develop celiac disease. End of discussion. If she tested positive for one or both of the genes, well, that was tougher. In that case, what was the reasonable thing to do? Was it fair to eliminate all gluten from her diet to avoid developing celiac disease?  We had good reason to believe she carried at least one gene. Myself, my brother, and my mother all have celiac disease. This was not a decision we took lightly. We spoke with our families. We reached out to the gluten-free community. We spoke to our pediatrician. Ultimately, we made the decision to have our daughter genetically tested. The referral for genetic testing had to come from a gastrologist so we made an appointment with the head of gastrology at a major children’s hospital.

Now the gastrologist was under the impression that we were seeing her because we suspected our daughter had celiac disease. We explained several times that she didn’t have celiac disease but we wanted her to have the genetic testing, so we could prevent her from ever developing celiac disease by keeping her gluten-free. The response we got from the doctor floored us. She asked us why we would want to deprive our child of the joys of a pizza party at school? She wanted to know why we would want to single out our child by not allowing her to have cake at a friend’s birthday party? Her advice: let her eat gluten and if she became symptomatic, bring her in for a colonoscopy. Let’s break that down:  let her enjoy food,  put her through an invasive test if she became sick,  and if the test came back positive for celiac, then she would have developed the disease we were trying to avoid in the first place!?! There are about 300 known symptoms for celiac disease and many of them don’t occur in the digestive system. What if she had no digestive symptoms at all?  Now long would she go undiagnosed with her body attacking itself?

Having celiac disease myself, my perspective may be different from the norm, but food is not the most important part of either of the events the doctor mentioned.  The doctor resisted the idea of genetic testing but we were persistent. It turned out our daughter has both the DQ2 and DQ8 genes. So we have kept her gluten-free. She is on a very limited gluten diet. This meaning, we don’t obsess over making sure every thing she eats is 100% gluten-free the way we do with me. We never purposefully allow her to eat gluten, but we do make sure anyone with her understands she will not get sick if she accidently eats gluten. And on rare occasions, accidents happen. She ingests at most, tiny amounts of gluten.

Family get-togethers as well as events at church, provide lots of gluten-free options. She lives in a gluten-free home. Most of her friends have gluten-free foods when she is with them, and we always make sure to bring gluten-free treats to any event she attends. A gluten-free life is all she has ever known.  Our daughter is almost ten and just within the past year she began to ask questions about being gluten-free. She has also started getting upset when she wants something and can’t eat it. And I totally understand. Eventually, she will get to make the decision as to whether she stays gluten-free, and if she decides to eat gluten we will respect that decision. While this was not an easy decision, years later we still feel we made the right choice.

As a parent, I spend my days making lots of decisions about the well-being of my children. Some are made in a split second and some of them are thoughtfully decided through time and prayer. My husband and I have always tried to do what we think is best for our children. We know that not everyone agrees with our gluten-free decision. Both of our daughters are happy and very healthy. We spend our days making memories that don’t surround food. That’s good enough for us.



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