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    Do you have questions about celiac disease or the gluten-free diet?

babinsky

Coping With The Guilt

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I was diagnosed about 2 months ago and as a precaution decided to have blood tests run on my two boys. I am like many, having a difficult time trying to adjust to a new life style and at times have a real pity party for myself. My younger son didn't show any signs and I was thrilled. My older son called today after hearing from his doctor....his numbers are high and his doctor wants to do an endoscopy to confirm that he too has celiac disease. I feel so guilty for passing this on and the adjustment he will have to make. He is away at college and I am sure as hard as this has been on me it will be far harder for him. Does everybody go through this kind of feeling. I would not have made a different choice even if I knew the outcome before he was born.....but that is the logic...the emotion if breaking my heart.

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I used to feel feel INCREDIBLY guilty that I passed this on to my son. I am still sorry that he has to go through it. But, when I told this to my husband, he made a good point. Would we have chosen not to have our kids if we had known about celiac before we had them? Probably not.

Everyone has genetics that will lead to something. We could have passed on poor eyesight or an increased cancer risk or webbed feet, just to name a few. celiac disease is just the cards our kids were dealt. It is hard in some ways, but in may ways it is a blessing. It has given my son a sense of compassion for other kids that I'm not sure he'd have without celiac. He tries hard to make sure all his friends are included in things if there's even the slightest chance they might be left out. He has learned self discipline at a very young age, and has taken charge of his diet. These are good life skills to have.

I bet if you stopped to think about it, you have passed on some pretty great things to your son, too. My son got my eyes and my goofy sense of humor and my great memory.

Keep your chin up!

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I found out I had Celiac only after my daughter's diagnosis. I know all about the mommy-guilt but you can't let it get you down. It is not productive or helpful to you or your son. I'm positive that your son would choose celiac over not being alive and I'm pretty sure he wouldn't want you to feel responsible for this.

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The genes for Celiac are pretty darn common though----I think 30-40% of the American population has them. So, he could have gotten a gene from your husband, too, if your husband has one/both of the genes.

Generally, everyone who has Celiac "got" the genes from their parents. Can't help that. But, parents can help by helping them lead a healthy life: by supporting their gluten free diet, making gluten free treats (i.e., things they are used to), etc. Some parents do, some don't. I think there was even a recent study that says that those that do best on the diet have the support of family and friends.

Just think----you'll know how to give your son the best support possible. And, he'll be happy to come home since he won't have to worry about food.

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I can understand how you feel. My children have yet to be tested, but it's on the horizon for their annual checkups in February. I have talked with both of them (7 and 9) about it and I'm including them in my cooking and experimenting with gluten free foods just in case...they both are mature enough to realize it is a possibility even though neither of them wants to have it.

When I think about it though, I was never mad at my parents for passing it on to me. It's not like they wanted it to happen and their parents didn't want to pass it on to them etc. I doubt your son will feel at all angry or upset with you. I'm sure he won't like it as none of us do, but it does become a way of life very quickly. It definately will take an adjustment period and I'm sure will be tough at first with him being away at college.

I wish you and him the best.

Please don't feel guilty about it, you had absolutely no control over this outcome.

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My Mom has passed many things on to me including Celiacs. I hope she does not feel guilty. It is just our life and makes us all that much more closer. It's not like other disorders where we would die early or have horrible lives. We are very lucky. Try not to feel too guilty- he will be fine!

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Thanks....I know it could be worse and I just need to put it in perspective. He is extremely bright...much smarter than his mother..LOL ...but has been on medication since 3rd grade for ADHD. We went through almost a year of testing before starting the meds...diet changes, enviornment changes, counseling, and now I wonder if the whole time it could have been this. He graduated high school with a 4.25 GPA, played sports, held a job and has truely been a great kid...but off his meds he could be quite difficult and VERY unfocused. Is it possible that this whole time...15 years he has been medicated for something he does not even have. I need a u-haul to get rid of all the medications I am now getting off of...maybe guilt isn't the right word...confusion, anger, sadness, at any rate I do not think I will be putting my name in the hat for mother of the year.

The good part is that this will turn me into Bety Crocker...I have not cared enough to experiment with cooking "like things" for myself..if it will make it easier for him I will take the time to learn. Amazing what your kids can bring out in you...even when they are grown men of 20.

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You had no way of knowing and the sad part is alot of people suffer for years not knowing. I am pretty sure that mine started in High school. I was anemic then and fatigued and just had more "downtimes". I was always such a happy go lucky kid before that. I didn't find out I had it until after my third boy was born. Two out of my three kids had birth defects, which I tend to wonder if it wasn't from my undiagnosed celiac disease. Who knows?, but you can't think about the past. He will adjust like the rest of us. It has been over two years for me and I am finally adjusting to my knew life. I think some people adjust easier then others. We pretty much don't eat out, which was a huge loss, but I try and think of the positives for that. We eat very simple and that is what has worked for us.

Try to think about the future and not dwell on what could have been. Believe me, I had an experience with one of my son's surgeries and felt HUGE guilt and it ate away at me for years. It SO isn't worth that!

GOod luck and try and encourage him and give him as much information as he needs and wants.

Take care,

Monica

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I believe I was passed this from BOTH my parents, because my father's sister (my aunt) has it, and my mother has severe digestive problems that she claims are IBS. She won't even do the gluten-free challenge for a few weeks.

Am I mad at them for "giving" this to me? Absolutely not. Sometimes I get mad that I have to deal with celiac in general and the inconvenience of it, but in another way it's been one of the best things that has ever happened to me.

I never cooked much before, and now I'm a passable cook and learning to be a fairly good baker. I used to eat out all the time, now I virtually never do. I eat about 7 servings of fruits and veggies a day. I've lost 30 pounds (I'm overweight) and am still losing. Believe it or not, I eat a variety of foods that I would not have eaten before.

The acne I had since I was 11 has cleared up. I used to suffer from severe insomnia. I also used to have a binge eating disorder, where I ate extraordinarily large quantities of food in private. That problem has completely vanished.

In short, it's made me so much healthier.

In addition, being able to deal with this with other members of the family is a blessing. Because my aunt, brother and I all avoid gluten, we have someone to share good foods, bad foods, recipes, etc.

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Oh I'm sure you know this but this sort of guilt is just a waste of your good time and energy. It is what it is and there is nothing you can do to change it and having guilt doesn't change a thing other then your "energy". Its unproductive and hurts you and everyone around you. I gave up almost 100% on guilt in any form a long time ago.

Instead put your energies into other things, learning to bake and cook gluten-free. Its fun and quite an adventure at times.

I've been gluten free for over 6 years and I've never felt sorry for myself at all, heck finding out I needed to be gluten-free was a relief for me, finally I could feel healthy again!

Then I found out that my daughter has to be gluten-free ( she also has had a life long life threatening allergy to peanuts and gluten-free and nut free is twice as hard!) and I've not wasted any guilt on that either, I can't change it so why bother with the guilt.

Instead I've tried to recreate some of her favorite things... bread, pizza, sweet treats. We just made homemade fudge in 5 different flavors! Fun.

Of course we've all heard that we must focus on our glass as being half full instead of being half empty but.... it wasn't until I got a little older with a broader perspective that I really "get" it. We have a disease that is easy to treat... no drugs, we can be healthy, enjoy life...

Good luck, you can do this!

Susan

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