Some People Live with Celiac Guilt

by | G+ Amy Leger

It may not be celiac guilt as much as chronic-conditions or genetic-health-issues guilt, because I think a lot of people have this no matter what the disease or illness. Take, for example, my grandmother, whom this post is dedicated to. She died Wednesday. She did not have celiac disease, but her husband – my grandfather -had the gut issues on his side of the family (both colitis and celiac disease). He died 28 years ago, but after my daughter was diagnosed with celiac, my grandma often felt bad that their side of the family passed down several gastrointestinal issues.

Celiac Disease: All in the Family

When my husband and I decided to have children, we weren’t thinking about what diseases our children would be genetically predisposed to; let’s face it, no one would have children if we all thought they all were destined toward a life filled with chronic health conditions – some more serious than others. Joel and I knew about my grandpa’s and cousin’s colitis. But once Emma was diagnosed with celiac disease, that’s when I found out my grandpa’s sister had been dealing with celiac for 40 years. Now that I look back, she skipped my wedding reception and I wonder if it is because of her diet. I wish I would have known….

Of course since then, my brother also was diagnosed with celiac. My father has been tested but came back negative, so while he could be the carrier he doesn’t appear to have it. Joel and I discussed bringing another child into the world (after Emma), knowing that he or she may end up with a life-long health issue. We decided to take that risk when we had Grace. So far she has shown no signs of celiac disease.

Taking the Blame for Celiac Disease

None of us can truly blame others for the genes in our families. Nor can we as parents or grandparents feel guilty for bringing children into this world who become sick because of our genetic makeup. A website for Children’s Hospital of Boston explained it nicely: “Do not feel guilty that you somehow ‘gave’ celiac disease to your child. It may be a blessing in disguise for your ancestors that had suffered from similar symptoms that no doctor ever fully diagnosed. Perhaps they had been suffering from the effects of undiagnosed celiac disease.”

This, in part, is how my brother was diagnosed; because of my daughter, we knew about it. Before his diagnosis of celiac disease, his health was in a downward spiral. Who knows where he would have been in 10 years. Plus now when my brother and I have grandchildren, we’ll both know to keep our eyes peeled for any suspicious symptom.

Ultimately, when my grandma apologized for the celiac genes, I told her she shouldn’t worry about it. I am not sure whether she took my suggestion or if her fretting continued. I just hope when she passed away this week she didn’t think she was to blame for all the “ills” in our families.

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3 Responses to “Some People Live with Celiac Guilt”

  1. The following is a comment from Sharon. For whatever reason the Reply/Comment function was not working and she sent it to me.

    Hi Amy, My condolences to you for your grandmother. My heart goes out to people who feel guilt for what they pass on genetically. In the area of celiac, my question is “should we blame ourselves?” Some cultures have evolved without gluten in their diets at all so gluten intolerance may be a biological trait rather than a “defect” based condition. In addition, I wonder about the highly hybridized strains of gluten grains that our culture is fed and if our bodies need a few more hundred years of evolution to process them properly. Again, the inability to process gluten may not be our “defect” but that our bodies cannot adapt to the abnormally absurd genetic modification of grains in the last 50 years. Instead of moving into guilt, can we see ourselves as the harbingers of the future medical challenges of our entire country?

    Thanks, Amy, for your frank and dynamic postings.
    Sharon

  2. I agree, Sharon. A Washington State University researcher named Diter von Wettstein has won a grant from the National Institutes of Health to create a wheat which does not contain gliadin. Celiac disease is only one of many autoimmune diseases which is triggered by this terrible hybridized protein. Have you read Dr. Alessio Fasano’s research on PubMed regarding Zonulin, which is produced by mammals (including humans) when they eat gliadin? Zonulin causes more space between the cells – gliadin has been found in the brain, so it is able to get through the brain-blood barrier. So I have grown to believe that no mammals should touch gluten! If you are not a mammal, I guess “no worries.” Otherwise – see if your health improves when you eliminate gluten!

  3. Does anyone have a specific medical reference for scoliosis and celiac?
    I was one of those young teens who suffered severe, rapid and inexplicable curvature, but other than that no other symptoms till later in life after having children. There has been an ongoing genetic study by Axiotech sampling all scoliosis patients and their kin–and they have mapped what they are identifying as the scoliosis gene–has anyone working on celiac drawn on this material?
    Considering wheat berries found in ancient archaeological contexts have low to non-existent levels of gluten, it seems we have culturally and agriculturally selected high gluten varieties over thousands of years-its not just an issue of toxicity but quantity–glad to hear someone is working on a natural alternative and not just a marketable chemical prescription. Yes, I agree–we will see in the near future that gluten is a source of many medical issues. Avoidance will be a cheap and easy solution for many–and I think people will need to understand the dangers and responsibilities of genetically tampering with our natural food sources. In other words, please tell me Monsanto isn’t cross breeding wheat with corn or tomatoes for higher yield or pest resistence?

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