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Guest maddiesmom

Guilt?

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Guest maddiesmom

Do any of you guys ever feel guilty that you have passed on the celiac gene to your children? I have not been tested myself but I am sure my daughter has gotten the gene from me. My unlce on my father's side has Chron's and so do he's kids..(my daughter has the gene for Chron's also) as far as we know nobody on my husband's side has the gene for either. This is new to us and I pray that the guilty feeling goes away. I know deep down that it's not my fault but I still feel guilty.

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Nope, I passed on a genetic flaw for autoimmune disease to both my kids. I did not plan it that way or do it on purpose - no one does. I also passed on the gene for brown hair and green eyes to my daughter, my son got blue eyes from daddy and an amazing brain for math and music.

We have no control what gene combination they get and we dont find out til there here on earth.

A surprise package with no instruction manual and no guarantee. :o:)

Maybe its not so much guilt but rather a sadness that the future you envisioned has a fork in the road and went in a direction you hadn't planned. There is a grieving process that accompanies a life changing diagnosis. Allow yourself that, and then celebrate healthy gluten free eating.

As you can see my my signature - I've been through the process more than once with both children.

The nagging underlying feelings you have right now will disappear, just needs some time.

Sandy

:)

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If celiac is the worst thing you've passed on to your kids, they're doing pretty well! And celiac is not a death sentence. It can be inconvenient, but they will be able to lead a "normal" life and do whatever they want even with the celiac. I don't have kids, so I can't quite understand the guilt, but it's not like you did something wrong. There's no way you could have known.

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This reminds me of a conversation I had with my aunt. She has a friend who was diagnosed with Celiac as an adult. Well the woman decided not to have children due to the possibility of them having Celiac. To each his own of course but I watch my son, who was diagnosed with Celiac 2 years ago at 4, and he is happy, healthy, and well adjusted. The only difference he is gluten free. Once you get past that beginning of adapting to the knew diet and way of life, and you begin to see your child grow into a healthy person, you will not feel guilty anymore.

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We've actually held off having children a few years, because I know she'd feel guilty if our kids came out celiac. We did discuss having them selected, so that we can make sure the gene doesn't get passed on, but they'd be coming into a gluten-free house anyway...

As it is, we're now tempted, rather than having our own kids, to adopt celiac kids, since I know from having friends in the care system that kids with any kind of disorder like that never get proper care and have a hell of a time getting anybody to care for them because the majority of people don't seem to want to interrupt their nice, neat little lives for someone else's 'defective' kid. They'd be coming straight into a gluten free house, and we'd know exactly what they'd be gowing through. I think its a worthy cause!

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We've gotten past the guilt (and blame since we haven't gene tested ourselves yet) of who gave Celiac Disease to our child, and I'm sure you will, too. It definitely was around at first, plus I had a TERRIBLE time dealing with the guilt of "poisoning" my child nearly to death until we were told that he might have this disease - that guilt took longer to get over. It didn't really matter that I had never heard of this disease until then, I was his mother and I continually fed him something that nearly killed him. And when he was getting critically ill was the same time I gave birth to our daughter, so I then had the guilt of "what if we gave it to her, too?"

But you get over it the more you adjust to the diet and then see your child healthy. In fact, by comparison our son acts and looks healthier than most kids his age. He's almost exactly 3 1/2 and looks more like a 4 1/2 year old now. He's very happy and outgoing, well coordinated, and knows more about food than any other kid. He loves to help me cook, and he also loves to run, play baseball, and go to every train themed store/event/place we can. And we decided to keep our daughter gluten free, too, until we know if she has the gene or not. And our whole house is gluten free, too, so that he always has a "safe" place to eat. Now the only guilt that pops up is if there's an accidental glutening, but that happens rarely at this point.

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As was said, not so much guilt maybe as an overall sadness. When I had my kids, I didn't know I was a celiac. I have 5 kids and I think they would all be better off gluten free. My daughter was born with a hip defect and yes, I feel very bad about that, yet I know it was not my fault that it happened, there was nothing I could have done to prevent it without knowing I was a celiac. Had I been gluten-free then, maybe it would not have happened, but who knows.

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My guilt was never about who gave them the disease. I felt like the worst parent in the world for poisoning my children for so long. DD was 9 when we figured out that celiac was the source of all her problems. It took the baby to figure it all out as she had more classic symptoms. Three doctors over 9 years never figured it out, but I somehow felt guilty because I didn't.

I have since gotten past that, but it was pretty overwhelming at first.

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I felt guilty for a while... but I'm not sure if it was guilt or it was more hurt that my daughter had something "wrong" with her. I felt like I needed to blame someone to get rid of the horrible feeling that something was WRONG with her so I blamed myself. Replaced the feeling of disappointment and sadness with blame. Then I felt guilty for feeling badly that my daughter had CEliiac disease when there are so many other parents out there who hear that their child has a life threatening disease.

Now that we are 6+ months into Gluten free life I still wonder which of us "caused" this to happen but I no longer see it as blame. I was a teacher before I was born and never looked at kids with physical, emotional, or learning disabilities as something being "wrong with them" and I never looked at people with Diabetics as something being wrong with them... it was just a part of who they are. It has taken me a while but I have now realized that this is just one of the many things in her life that is going to shape who she is and how she reacts to things. I know it has changed me for the better.

Some positives:

1. I am more sensitive to my friends food allergies and they have a better time going out with me and being at my house (I was carefully before but now I KNOW what they are dealing with

2. I am a better cook and baker and get better every day :) Something that I am beginning to like bragging about!

3. It has forced us to be healthier than before.. I love the fact that my 2 year old chooses fruit and veggies over cookies and candy :)

4. My daughter at 2 is already beginning to recognize that there are foods she can't have pointing them out at restaurants and saying "That has Gluten in it" And a grocery stores she even pretends to read labels :)

5. I've actually started eliminating other things from out diets completely :) Trans fats are out as is High Fructose Corn Syrup. Everyone in my family is healthyer because of it.

So really as horrible as this was... the diagnosis changed our lives for the better and when I weight the negatives with the positives.... so far the positives are winning :)

Remember its okay to feel guilty... I think everyone does :) But try and focus on the positives because after all we all want our children to have a positive outlook on life... and we need to do everything we can to teach them how :)

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