Guilt

[eternity]

Three out of four of my children were diagnosed with celiac disease in July. My doctor dropped the news on my head without any teaching, explanation, nothing. I did internet research and my mother ordered Betty Haagman's book for me along with a couple others. That is how I learned to feed and take care of my kids. It has taken a toll on me and has been a huge stress living in constant fear I will make a mistake and "poison" them.

I recently realized the spaghetti sauce I have been feeding them is not gluten-free. They eat it at least once a week. I am overcome with guilt. It is the first major mistake I have made. I feel so responsible so guilty. They trust me to pick the right foods and make these decisions for them and I have been poisoning them unknowingly week after week as I wonder why they aren't getting better faster.

I am just in tear over it. That and the fact that I have no doctor support and I just also found out they should have follow checks on certain things and certain labs done after a celiac diagnosis and their doctor hasn't ordered or checked anything. I am worried about their health. I don't know a good doctor to change to that knows about celiac. I am just feeling overwhelmed with the responsibility and my limited knowledge and the guilt of my error.

There really isn't a point to this post I guess. I just am sitting here in tears and needed to vent.

Has anyone else been through this? Did you make mistakes in the beginning? Did you feel this guilty?

[tarnalberry]

Everyone makes mistakes at the beginning. In fact, you'll make mistakes, here an there, throughout the years. They're just that - mistakes. You are clearly doing the best you can, and this is something that can be tricky to adjust to. We're so used to humans being able to eat whatever food they want, but in this case, you can't. It's hard. And mistakes will happen. Try not to beat yourself up about it, and realiize that you feel guilty only because you care about them so much. You now know that the product wasn't gluten-free, so you won't give it to them again. And that's what matters. (This is one of the reasons I recommend sticking with whole foods - making your own spaghetti sauce, for instance. It's one less stressor when it comes to food.)

They will recover, and you'll learn more throughout the years. Hang in there. :-)

[sashabetty]

You've come to the right place to vent! There is a lot of guilt and anger and frustration that is so normal after a diagnosis and the first six months or even the first year is certainly the hardest. You are still learning, so give yourself a break, you are doing the best you can, and you will get better at it as time goes on. Your children are so lucky to have a parent that is so dedicated to preserving their health. It's not an easy adjustment going gluten-free, give yourself a pat on the back for getting it right 99.9% of the time! I know the guilt, my daughter is gluten-free, and I have "glutented" her by mistake. You are also in the right place to get the information and support you need to help figure out the food choices. Most of us probably mess up once in a while. It will be OK.

And remember that as a parent there are many opportunities for guilt, try not to dwell on it too much.

Take care!

[pixiegirl]

I'm only 4 weeks into this and I've made one or two mistakes.... it comes with the territory we are learning a whole new thing... a totally different way to shop, eat and cook. If you were on a new job, or learning a new skill... you'd be far less hard on yourself. You wouldn't expect to be a good tennis player after one lesson or even after one year. It takes time.

You are right your kids do depend on you to make the right choices for them and it seems like you've taken that very seriously and you have done the best you can. Part of life is all about mistakes and hopefully learning from them. Keep telling yourself that your kids are on the path to a healthy life and its a journey... every day new foods, new products, and what not are introduced and we will have to look at and evaluate those... we do the best we can. Mistakes happen and guilt won't fix them. When you make them just tell yourself that you now know about that product.

I've downloaded tons of food lists and I've turned them into a Master list. I've e-mailed a bunch of companies who's food I like and asked them if they were gluten free, I've received answers from everyone (except one vitamin company blew me off so I'm going to assume they are not gluten-free). Perhaps one day I will be able to shop gluten-free without the lists, but right now I need them. I'm in the learning phase.

You sound like your doing a wonderful job. As far as your health care goes... can you make calls to other doctors in your area, explain about the Celiac and ask if they have dealt with the problem before, if they will offer continued testing and more support. I've had good luck with making calls to doctors... I've had the nurses call me back with the info and next Thursday I'm going to see a new doctor that sounded like she'd care more then my current doc.

Remember no one is perfect and the quest for perfection is really a stressful waste of time (believe me I know this first hand), just continue to do your best.

Susan

[darlindeb25]

i agree, you are doing great --we all make mistakes --dont be overcome by guilt about spaghetti sauce--move on, get one that is gluten-free or make your own---i glutened myself for 2 weeks and never knew --i have been at this for over 3 yrs and this happened 2 weeks ago--its easy to do--like i say--i am 49 and maybe i should take an adult with me to the grocery store to read labels ;)deb

[ryebaby0]

3 of 4 kids? Good lord, you should be proud of yourself for getting through the day! Seriously, it does take a long time to get the hang of this, and there are always going to be mistakes. Just last week I stirred the gluten-free pasta with the spoon I had just taken out of the mainstream. (Stood there muttering profanities, then poured it down the sink) We are coming up on 1 year, and I can see now that it was a mistake to read EVERYTHING and EVERY website---I made myself crazy and paranoid. I remember crying when I read in some GIG handout that "most" spices weren't gluten-free and "many" drinks were not. That's true -- but it's also true that McCormick's -- sold in most every grocery store, IS gluten-free. And there are lots of drinks that are gluten-free. I think you need to go slowly, resist the urge to feel that your entire house is a giant poison trap. Clean the kitchen, clean the dishes, make simple foods from simple ingredients. You'll get there....

joanna

[Guest Annie74]

Are you located near a Children's Hospital? If you are, call their gastroenterology dept and make an appointment with one of the doctors that works with many celiac patients. If you are not located near a Childrens Hospital I would get out the yellow pages and start calling all the pediatric GI doctors, asking if they work with or specialize in celiac disease.

As for your mistake, don't dwell on it! We all do the best we can with what we know at the time. Your kids are lucky to have a mom that is so concerned about their well being.