I really don’t need to write much more. But I will. 

The fact that I am a Celiac means that I got it from somewhere. My cousin on my mother’s side is also a Celiac. This means I very likely got it from my mothers side.

And yet NO ONE in my family wants to get tested. My little brother (yes, the same little brother who used to eat all of my food) has always had the same issues that I had vis a vis the whole waking up feeling what we like to call “stomachly-challenged”*. He also has many other less-traditional symptoms that I myself suffered from. But he won’t get checked.

My mom has always said that eating white-bread makes her feel slow & bloated. She had to have her gallbladder removed, and she feels healthier when I force her to eat gluten free.I also will defer back to the start of this post when I mentioned that I am pretty sure I got this wonderful genetic-gift from her side of the family. But she won’t get tested.

My older sister ALSO had her gallbladder removed. At 30. After having so many strange symptoms that it took about 8 months to diagnose. She calls her youngest a mini-Sarah(that’s me!) for all of our similarities– which go beyond advanced reading levels & a strange fashion sense and includes slow speech development (despite great intelligence), being smaller than the rest of her age group, and lips so “chapped” that it extends all around her mouth & bleeds sometimes(this is actually a rash, guys. It’s called denial). Before any kind of invasive testing, my niece’s doctor had my sister remove wheat, eggs & dairy from her diet for a while & things started looking better — but my sister decided it was easier to give her allergy pills when she breaks out rather than continue living gluten-free. OH, and I guess I might as well mention that my sister herself refuses to get tested.

It seems that my entire family wants to deny the fact that this is hereditary. That I had to get it from somewhere. That the mere fact that I am a Celiac means they have somewhere around a 22%chance of having it, too. And with all of the stress that we are so often under, any of them could have triggered that gene & become a statistic. But they would rather live in denial, and instead of facing the possibility of diagnoses they choose to ignore me when they complain about something & I mention that used to be one of my symptoms. (Or better yet, they roll their eyes & think I am trying to convert them so I don’t feel so alone in my anxiety at holiday gatherings involving food, which is only about 13.8% true.)

I don’t get it, I really don’t. These are logical people. Well educated, degree-having people who watched me suffer for years & then stood amazed as I took gluten out of my diet & started acting human again. Oh, and one of them is a nurse. They have been given every reason to get tested & see if they are potentially destroying their insides, but they don’t want to deal with eating gluten-free.

I know for a fact that I am not the only Celiac with a family like this– I have a friend who is diagnosed & none of her family will even consider getting tested. But I am not really sure how wide-spread this is. Are all families as stubborn as ours are? After you were diagnosed, how open to getting tested were your family members?

 

 

 

 

 

 

 

*OK, OK– calling things “stomachly-challenged isn’t a thing. We have never called it that. But I am going to pretend.

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About Sarah Saturday

I am a celiac living in the greater Los Angeles area. Finding gluten-free friendly eats can be rather problematic, but I have learned to adjust, and hope to continue learning new things to share. Living gluten-free is not always easy, but it can be incredibly delicious!

2 responses »

  1. My mom is like that! Sometimes I just want to grab her by the shoulders and shake her! She’s been symptomatic since she was a kid, but won’t do an elimination diet. I don’t have celiac but I am *severely* gluten intolerant and have sensitivities to casein, soy, and eggs as well. I suspect she is as well. My mother is also a nurse, and actually is a health coach in a weight loss program – so she talks about food all the time. I don’t get it either.

    Sometimes I think that it’s just a lot of years of habits to break. Or it’s intimidating, especially to people of our parents’ generation – case in point, every single conversation I’ve had with my aunt and uncle who don’t understand why I’m still gluten-free…

    I know it’s also problematic for my mother because she lives in a house with her boyfriend and my younger brother. Who eat a lot of gluten and aren’t very helpful when I go home to visit (they leave bread crumbs EVERYWHERE). She doesn’t want to make two dinners or have to buy special food for herself.

    One thing I have learned from her and her health coaching for weight loss – a lot of women are bad about doing the things they need to in order to take care of their health. We’re raised in a culture where women are often taught to put others first with no consideration for themselves (still a bit of a 1950’s mindset) – so doing something like eliminating gluten from their diet when other people don’t need to is like… unfathomable.

    I do know that berating doesn’t work. I’ve tried it. When I go home to visit, I do a lot of the cooking so that she can see how much better she feels when she’s eating clean (which she acknowledges). I send her recipes and links to stuff that I try out and think are good. I bought her a gluten-free cookbook for Christmas one year, largely under the ruse so she could learn how to feed me better. Gentle persistence and leading by example is slowly working.

    You could also gently remind them that people with celiac (especially undiagnosed who still eat gluten) are more prone to colon cancer. Gluten is terrible! I doubt your sister would want her daughter to have an increased cancer risk. It’s a crass tactic, but you never know. Sometimes people need to get scared.

    • I do the subtle nudges all of the time… I know I can’t force them, but it really bothers me to know that they suffer but won’t do anything to fix it! It especially bothers me with my niece, b/c she is just a kid & doesn’t have any choice. I may have to subtly work in the cancer bit at some point, because I really worry for that kid!

      And my mom has the same issues– her husband&my brother are not supportive, and they are both picky. My mom’s favorite foods have always been very ethnic & flavorful, and they are both the meat-and-bread-rolls kind of guys. They won’t eat spicy, and won’t eat things that they can’t easily pronounce. So my mom either has to cook just for her, or not eat the things she enjoys. So she waits for me to come home to visit so she can have someone to share with. Which isn’t fair to her OR her body.

      You are completely spot-on when it comes to women; my mother has ALWAYS put our health above hers, and now she is paying for it. I feel like women-particularly mothers- need to be reminded very regularly that if an airplane goes down, you put YOUR mask on *first*. f you don’t, you might not be able to put the mask on the kid.

      We as a gender just have such a long history of taking care of others at the expense of ourselves, but we can’t really take care of another person if we don’t take care of ourselves first.

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