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It's Unfair

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Posted 12 May 2012 - 05:54 AM

Honestly, if celiac and tourettes are the worst genetic disorders that you could pass to your future children then you should consider yourself lucky. Neither is a certain death sentence unlike cri du chat or tay-sachs both genetically linked disorders that generally result in death in infancy. Celiac and tourettes can be managed and since you know that there is a possibility that your future children may develop celiac or tourettes you can be vigilant in watching for symptoms.
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Posted 12 May 2012 - 08:11 AM

There will be medical advancements that cure or control disorders. Genetics is just somewhat of an educated guess for outcomes.

My sister was 1 out of five children born with a hole in her heart. Patent ductis. It is one of the last developments for an infant and this hole usually closes. Hers didn't. She was the 4th child to have open heart surgery in the early 70's from the Detroit area. It was rather gruesome. The surgical entry was through the back and scars remain on her shoulder blade. (They weren't sure if cutting through the chest bone would ever heal, so the decision was made to go through the back.)
This same condition (olden days it was called "blue baby") is now mainly cured with an injection of medication at birth. :D
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Posted 12 May 2012 - 08:44 AM

You can't worry about the what ifs in life. Everything is a mystery. That's part of the fun. If you want children I agree with the above posts there are much worse conditions. As a nurse I've seen the worst of the worst. And these two aren't bad. If your doctor thinks you can have children and you want to then I would say go for it and enjoy your babies. It will all work out.
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Posted 12 May 2012 - 10:32 AM

Girlfriend....you are the same one with advice for me when I was sad my 11 year was feeling left out and different. Don't tell me you aren't strong. You said you didn't get our weird attachment to food. Just remember that when you have kids. HA HA! I am married to a type 1 diabetic. We had 2 kids with celiac genes. We have been tested and neither of us have celiac. But gene testing shows we both carry it. 30% of the population carries it. My 11 year does have it but no symptoms. My 9 year old will be rested in 2 months. My 11 year old also has the diabetic genes so we are holding our breath. Saying that....I'd do it all over in a heartbeat. I have a friend whose 4 yr old had leukemia and took chemo for 3 years. She would have given anything to fix him with a diet. But saying that....it is still hard. It is hard when your child gets a cold and call the nurse line with the dumbest questions. You will cry when they give him/her shots. You will search her little newborn face and wonder if those tiny Spock ears will go down? (Yes, I did that with #2) And then if she is diagnosed with celiac you will go through denial like me and wonder if it is really that big of a deal if she doesn't hurt just so she can be normal. You'll search webmd when a mole looks strange and decide she really has elephant man's disease instead. (true story....funny now but true) Lesson: stay off WebMd. I have to deal with my dh and his insulin and my daughter with her gluten. But this weekend, we were all screaming and riding rollercoasters and happy as a lark. We all have our crosses to bear and some just get to eat bread and sugar while doing it. We don't. Kids are amazing...Spock ears and all.
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Posted 12 May 2012 - 10:59 AM

But this weekend, we were all screaming and riding rollercoasters and happy as a lark. We all have our crosses to bear and some just get to eat bread and sugar while doing it. We don't. Kids are amazing...Spock ears and all.

:) Fantastic!
This beautiful girl just hit it out of the park. :) This is what I was trying so hard to say. Kids come in "all packages" but they are gorgeous anyway! I would have given anything to have had one, no matter what "special attributes" she had.

Life is to be LIVED, no matter what we are dealt...and life is one big giant rollercoaster, so enjoy the ride!

DANI, You're stronger than you think you are. We all are.
Otherwise, we wouldn't be here, talking with each other.

You are just feeling anxious and down and overwhelmed right now.

Gluten does that to us. You do not think straight when your body is unwell from gluten or malnutrition. Trust me on this one.

Give yourself some more time to heal.
Take care, sweetie.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014


Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


dani nero

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Posted 13 May 2012 - 10:59 AM

Thank you for all your replies. I found them wise and insightful. Perhaps one must have a child, or be unable to have one, in order to be able to know what life is like without them? I never meant that I would want them or love them any less though, just that I didn't wish any of what I am going through on them (because we live in a world where we have to work so hard to make others understand as well as keep ourselves safe from contamination), and then add tourettes to the mix. I really have no trouble with a gluten-free diet, but I do have a problem with working too hard to be taken seriously.

I completely understand and agree with the possibility that my glutened-mindset is playing a big part in how I am feeling right now. Thanks so much for pointing that out and for being here for me. No more thinking about this until I'm sure I'm not under the influence of anything :-)

You're very special people.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD



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Posted 14 May 2012 - 02:54 AM

I was diagnosed with mild Tourette's syndrome a few years ago (a year or two after self-diagnosing it). When I went gluten free I had half a hope my tics might get better, then I heard there's no connection. Ah well, I live in hope!
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Blood test results normal. I refuse to eat gluten for a biopsy. Gluten-free since 15th April. Things slowly improving :-)

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