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What was the reaction of your family?

4 replies [Last post]
administrator's picture
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Joined: 01/08/2013

Were they supportive, confused, or did they think you were nuts? Please share your story.

Kimberly's picture
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Joined: 04/16/2013
Here She Goes Again...

If you know me, you know that I've pretty much chosen to eat "differently" than most my whole life. Other than my childhood when I was addicted to sugar and boxed mac and cheese (I was a chunky kid, go figure) I've tried very hard to eat as healthy as humanly possible. I'm known to my friends as an uber health nut, I consume seaweed on a regular, and likely eat more produce than most omnivores. When I declared myself a vegan at age 15, I think I was preparing the people in my life for what would be a lifelong passion of nutrition and well-being... and hopefully acceptance.

When my son came along, I had already been a vegan for over a decade. I didn't think I was going to allow him to eat meat. He LOVED tofu, so did I, and I thought we'd avoid most animal products together. Then the autism emerged, and I decided there were dietary changes that might benefit him. My family already thought I was strange enough, especially my in-laws at the time, and now I'm reducing food options even more? Honestly, I figured DCF would be called at some point. I think it was more difficult for the older generations to understand, thinking my diet consisted only of raw vegetables, horrified that I wouldn't let my boy enjoy a burger like the rest of America. What about birthday parties? What about cookouts? Many social engagements do revolve around food. It was easier for people to accept what I chose to eat for myself, but now I'm making a child suffer for the rest of his life by avoiding gluten? And then casein? And then even soy??

I remember when I first broached the topic of going GF/CF with my son's father. Supplying months of research, and articles, and even REAL LIVE PEOPLE to support this lifestyle within the autism community- he still thought I was off my rocker. Fortunately, I did all the cooking and shopping, so it happened anyway. As they say, the proof is in the pudding. I'm not guaranteeing the GF/CF diet works for everybody, but boy did it work for my son! The first two days (we called it withdrawals) my son went to bed about 3 hours early. He seemed like he was in detox. His tantrums started to dissipate almost immediately. Reluctantly, my son's father admitted he saw a huge change. How can you argue with results?

Over time, I think I gained about as much acceptance in this situation as I could possibly hope for. Family members and friends actually began to notice a change. My mom, completely supportive from the get go, learned to cook for him!!! Now that my son is a sneaky 11 year-old, we take his bouts of hyperactivity and sleeplessness as a clue that perhaps he got his hands on something not allowed in his diet. If anyone knows how to mount a video camera on a kid when you send him to school, do tell!

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Kimberly gf mommy
Andrea's picture
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Joined: 04/15/2013
What was the reaction of your family?

My family and some of the people close to me were upset. We had just lost my father to Refractory Celiac Disease, so everyone was very emotional when they heard that I had Celiac Disease as well. As I have said before, we had all just witnessed someone go through a horrible ordeal and I think some people thought that because I was diagnosed with the disease that I was also heading down that road. I think my grandmother (my father's mother) thought that. I know I freaked out for a little while.

The key is being educated. It's knowing as much as possible about the disease, the symptoms, what you can do about it now and what you have to do about it for the future. I know that there is no cure for this. The only thing that I can do is follow a gluten free diet. When my father was diagnosed over 25 years ago, people were not educated enough about the disease. No one knew what precautions to take. Did he follow a strict gluten free diet? Absolutely not. Why not? He didn't know what it meant. I also knew my father, and even up until his death he would have paid $200 for a Dunkin' Donut if someone was willing to go get it for him. He cheated on his diet every now and then, and that, of course, didn't help matters. His disease progressed so far that following a gluten free diet really wasn't doing much anyway.

Being who I am, and my friends and family know, there is no way I'm cheating on this diet. If there are rules to follow, I'm following them. I will not end up like my father. I will not let this disease stop me from doing anything I want to do, stop me from living, or stop me from finding a way to eat the things I want to eat! I believe my reaction to my disease influences others. I'm positive, so I have to believe others are too.

Kristine's picture
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Joined: 06/19/2013
Re: What was the reaction of your family?

My husband self diagnosed his gluten intolerance about 8 years ago. I have to admit, I was VERY skeptical. He is an extremely grounded guy. He is not inclined towards naturopathic / homeopathic anything, and he LOVES fast food and fresh bread. This notion that he may need to get gluten out of his diet seemed to come out of left field. However, the more we both looked into the common symptoms of those with celiac and gluten intolerances - every piece of the puzzle seemed to fit. He had the extreme fatigue when he eats anything with wheat, the bloating and abdominal discomfort, the skin rashes that itch and are painful and the irritability from just not feeling right. The true test was trying it for 3 days. That was the seller for both of us.

It has been a battle of wills at times for us to support each other in this lifestyle. I choose gluten free to make it easier for us both, and our family of 3 children are also gluten free. The support we have had from outside the family has been a mix of the same skepticism I had, with a legitimate interest in knowing more about this increasingly common dietary restriction. Some of our extended family have even tried the 3 day test on themselves, and noticed significant improvements in how they felt.

As awareness increases, I hope within our extended family members and friends, acceptance will ensue along with a better understanding of why choosing a gluten free lifestyle for our family makes sense.

Lucas's picture
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Joined: 06/23/2013
Re: What was the reaction of your family?

Your stories are truly touching! Thanks for sharing them.

I don’t have Celiacs or an intolerance of gluten as you folks, nor an aversion to either a gluten-free or gluten-involved lifestyle. I like the health benefits, and certainly agree with the results I’ve heard about. I have, however, been able to see the effects of a gluten-free lifestyle on someone I love, which has introduced me to this lifestyle.

When I’d met my girlfriend a year ago, I’d heard her ask the host “Can I eat this?” and it didn’t totally register that there was a dietary need involved. As I became closer to her, and invited to make her dinner, the fact that she was gluten intolerant was introduced into conversation almost in the same way someone would explain diabetes or some other serious health condition. I had a cursory understanding of the condition, but certainly not enough.

What surprised me was how she said it to me, as if this could be a deal breaker. I understand now what she’s had to go through when she tells people she can’t eat gluten.

Some people go out of their way to accommodate her, even falling into the traps of food marketers that advertise “gluten free” food, that never had gluten in it anyway. Others, utterly don’t understand, thinking gluten is just wheat, so she can have pasta if it’s not whole wheat.

And then, there are others that treat her as if she has the plague, and it’s this one I find the hardest to encounter. As if a lifestyle of this variety, whether chosen or forced, is somehow a bad thing.

Shock is usually prevalent, and the first reaction.

Really, you can’t blame people for being skeptical. World-wide, we’re not really health-conscious societies.

Still, to see people that deal with this stigma, shock, and misunderstanding, truly impresses me. It shows an inner strength that is amazing. For us, it’s a necessary life-choice.

If for you, it’s a health choice, a life-style choice, or because of intolerance, I applaud you too. If there is stigma or shock, please be sure that there are people that love you, that will be accommodating to the choice, and these are the people you will want around you throughout much more serious issues in the future.