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Getting Married, Scared For My Future Children

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Posted 29 June 2010 - 07:23 AM

I don't have Celiac and neither does my husband, but we passed it to both of our kids...... Out of your control. My kids are the healthiest kids in their circle of friends. I don't feel bad at all that they are forced to eat a healthier diet with minimal processed foods. My husband has a really rare eye disease which was a factor when we were ready to conceive, we went through all of the genetic counceling, but ultimately, we both wanted kids badly, it's something that is manageable and fixable, so we went forward.

Preface--I'm not telling the following to be hurtful in any way shape or form, but this is life and it's ALL in God's hands...

I have a coworker who's wife had a baby last year. Normal pregnancy, everything looked great. Baby started having seizures the minute he was born and is now severely brain damaged. Neither parent has a seizure disorder

Husband was born totally normal, his sister was born with CP, another coworker had the same scenario

You can't control what God gives you. Personally, I think if you want to have kids, go for it!!!
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Rachelle 20dance.gif

Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06

Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)

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Posted 25 February 2012 - 08:26 AM

My girlfriend has Celiac, and because of the advanced stage of it when she was diagnosed she is also very sensitive to casein, a protein found in lactose. She is a Type 1 diabetic, and has a kidney disease that--while dormant--means that she needs to take really good care of herself or she could quickly be looking at needing a replacement.

When I was learning about Celiac, I found a lot of clinical information. But I realized how completely inadequate I was when I was walking through Fred Meyer, one day. I decided to try to shop how I would if I were her. After an hour of walking around, I fell into a pretty acute depressive state for about 10 minutes as the reality of "this is *really* not easy* kinda sunk in, and seeing how much was unavailable. It was later on that night that I came across glutenfreemom.com.

http://www.glutenfreemom.com is an excellent resource for people with Celiac who haven't had a lot of support, or for people who want to see a slice of life of a family who is gluten-free. The tagline is "Because LIVING gluten free will not stop you from living the life you choose."

It is written and upkept by a real mom in a real family whose daughter was diagnosed with Celiac. She says, "I am not a doctor, nutritionist or a psychologist - I am just a Mom who is feeding her family gluten free and, as such, this web site is based on what we have found while journeying down this gluten free road."

It was such an amazing find, for me. It got me excited. They were living their lives. They have gone to Paris. Germany. Hawaii. RV'd across the US. She has recommendations for how to eat out, to allow her daughter to sleep over at friends' houses safely, and to make her not feel alienated or "different" at school. Practical, relational, real-life applicational stuff.

And I get to learn how to cook! As scarlett77 said, there is *so much* available that is gluten-free if you cook stuff instead of getting prepared foods (http://www.celiactra...iet-consist-of/)

I'd highly recommend checking it out. In reading different Celiac forums, there's a lot of support that is needed. This blog, I believe, may serve to give people some hope.

I know I'm speaking from the viewpoint of someone who doesn't have Celiac (or lactose intolerance or Type 1 diabetes or kidney disease), but there is so much life that you can live. Sites like glutenfreemom and http://celiacbymarriage.blogspot.com show that there is a hope and a future, not for merely surviving but for thriving in your environment.

I also recommend a book called "Eat to Live" (http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Eat-Live-Revolutionary-Formula-Sustained/dp/0316829455). It is one of those books that is transforming my life through challenging my current understanding of things, presenting me with good evidence, and communicating it in a way that is simple.
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Cara in Boston

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Posted 25 February 2012 - 06:05 PM

Since my son (6) was diagnosed 9 months ago, we have VASTLY improved our lives. I tested positive too, and just feeling better has made a big difference (didn't even know I had anything, just thought I was getting old and tired.)

Since our home is basically gluten free, we eat more meals at home, spend more time cooking as a family, eat a much healthier diet (no fast food, not much processed food, etc.etc.) Everyone (even the gluten-eaters) are benefitting from this. We still travel, have friends over, eat at other people's houses (I bring food for me and gluten-free son), etc.

My son is young enough that by the time it becomes a challenge (teen years? hanging out with friends at the mall and eating Cinnabon? I have no idea) college (keg parties, ?) he will already be used to the diet and kind of doesn't even miss the gluten stuff from the old days. I still crave brick-oven pizza.

It seems like every month a new bakery opens here . . . or a new product becomes available. It is only going to get easier and easier to be gluten free.

If I were younger and starting a family, I would just start out gluten-free from the beginning. From everything I have read, it is healthier for everyone anyway.

I wouldn't worry too much about it. In our circle of friends and acquaintances, my child with Celiac is the LEAST problematic issue. Everyone else I know seems to have kids dealing with much bigger challenges - and they were all taken by surprise. You at least know what to look for and have experience with the diet, should the need arise.

I didn't develop celiac disease until after my second child was born - in my late 30's. Even if your kids inherit the genes, they may never even develop the disease.

Congratulations and best of luck to you.

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Posted 26 February 2012 - 07:16 AM

First of all, congratulations on the engagement and upcoming marriage!

I can understand where you are coming from. Our daughter was diagnosed when she was 21 months old, and my husband and I were deciding whether or not to have a second child - especially when we found out my husband also has the disease. In the end we decided that the joys of having a second child who may have to deal with celiac disease then letting fear rule us. I am not all that religious, but I see what a wonderful, caring, compassionate, conscientious girl my daughter is turning out to be. In a sense we were lucky she was diagnosed so early - she has no difficulty with the diet because she doesn't remember any different - all she knows is that gluten makes her sick, so why would she ever want to eat it? She is almost four now, and she can read the word 'gluten' and we are working on wheat, barley, rye, and oats. But because she has had to deal with this disease basically for as long as she can remember, she is so understanding and caring for any other person who has allergies, medical issues, or disabilities compared to her peers. She is learning to be appropriately assertive about her medical needs with her teachers, and be aware of what she puts in her body. And she is only almost four. I am an optimist, and I think I am passing that on to my children, but I agree with the posts before that parenthood is completely unexpected and unable to be planned for (I too planned on natural childbirth and breastfeeding, I got 2 C-sections and formula feeding after 4-6 weeks for both kids).

It is a worry, but there are so many more severe problems with much more difficult solutions - at least that is how I have learned to deal with it as a parent.

Good luck!
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