Going Crazy Or Just A Concerned Parent

[JennyC]

I found out a week and a half ago that my son has Celiac via full blood work up. (His tTG levels were 3 times the maximum normal level for his age!) I feel that I have a handle on cross contamination and on the foods that he can eat, through tons of research and the help of you wonderful people. Now I am beginning to feel like I trust no one else but me to prepare his food. I feel that if we eat somewhere other than at home cross-contamination is almost inevitable. I feel like we can never eat at a restaurant again--even though my city has restaurants with gluten-free menu options. Even if we go to a family members house they will probably use 20 year old glutened pans to cook the foods they think he can have. Am I seriously going crazy? Is this normal reaction at first, or does it stay this way forever?

When I first told my best friend that my son has Celiac, she responded: there's a kid at my nephew's school with that disease and his mom brings his lunch to school everyday and freaks out whenever someone gives him something to eat. I can totally understand that!

Just how far is too far when it comes to protecting your child from gluten?

[Cam's Mom]

Hi!

Welcome to the club! I feel the exact same way. My daughter was diagnosed almost a year ago and we jumped right in like you. Then our dear friends and family started to say things like - we'll make a gluten free birthday cake for our child's party so Camryn won't feel left out - or someone would show up with a rice pudding to a pot luck and declare it gluten free. Oh, what to do in this situation - it seems so rude to turn it down when such caring people tried so hard to accommodate her. So she would eat a little bit - or better yet, since she is also diabetic we would say it wasn't time to eat and we'd take some home for "later". We would occassionally go to the salad bar at whole foods or our local asian restaraunt which is careful and understanding about food prep. Her intial tTG was 181 (norm being <19) and then when rechecked 7 months later her tTG was 73. So needless to say we freaked! We were doing everything right - right!? Well our dear concerned friends and family said "oh well, there's nothing more you can do". That so didn't fly with me - there is always something more we could do - so no more eating out - anywhere, no more food prepared by anyone but us. No packaged foods produced on equipment shared with wheat, etc.

One thing we did find that we were unaware of at the 7 month check is that we were contaminating her with vit. E oil that we were putting on her chapped lips. I called the manufacturer and found out it was wheat germ oil - ugggg! (watch out for tocopheryl acetate!)

Anyway, we are going back to recheck hopefully on Monday. Once we get a decent number maybe I will relax my thinking a little (but I doubt it). At school she sits at a desk at the end of the lunch table with a gap for crumbs to fall through and she never eats anything from anyone but us. We make some seriously ritous chocolate chip cookies so she's feeling no pain from all of this! Every play date that comes over begs to stay for dinner and I try to accommodate all of them (we also make the best mac 'n cheese). I think other parents feel badly because they can't reciprocate but I just use that second high number as an excuse for remaining vigilant.

In the end I think your sanity is as important as his health so whatever makes you most comfortable is important in this. And yes, it all gets MUCH easier!

Good luck!

Barb

[Ursa Major]

Jenny, you're not being crazy at all, just cautious. Sending your son's lunch to school and making it very clear to him that he can't accept food from anybody else is common sense. How old is your son, is he able to take some responsibility for himself?

And really, we as grownups will get glutened by well-meaning relatives, how much easier is it to do that to a trusting child!

At first it is probably a good idea if you bring his own food to family gatherings, until you know that some of them really, truly can be trusted and understand what it means to cook safely for a child with celiac disease. And with some that will never be possible. Such is life with celiac disease.

Wait a little while for his intestines to heal before taking the risk of going out to a restaurant. Because yes, the possibility of being glutened is always present. It is probably not a good idea to go out more than once a month even when he is well again.

But life is risky, if you never take any risks, you will have to stop living. It will be more harmful emotionally for him if you pack him into a cocoon and smother him. Teach him to be safe, talk to the teachers and principal, find a restaurant where people listen, and educate your family. And hope for the best.

If he doesn't get better, you might have to start from scratch finding sources of gluten and educating people. But that may not happen.

[Nic]

You are not crazy, I also worry about cross contamination when my son eats out. After 2 years on this diet I have learned who I can trust to cook for him based on their understanding of the diet and of cross contamination. My sister takes care of him throughout the day as he is in a 1/2 day kindergarten and she makes lunch for him everyday. She is fully aware of cross contamination and using seperate utensils, toasters, etc. We have never had a problem. My mom and 1 aunt also have cooked for him successfully as they fully understand. But I have another aunt who has offered to cook for him at family functions and I politely decline because I don't think she fully gets it (she keeps telling everyone he is allergic to yeast ). So you just have to use your judgement. For eating out we have had great success at Cheeseburger in Paradise if you have one near you. They are one of the few places with a gluten-free menu that offers gluten-free french fries. It is so annoying with the other places, what would it take to have a dedicated frier?

Nicole

[Guest cassidy]

I agree that you aren't crazy.

I don't eat food that other people prepare and I get sick almost every time I order off a gluten-free menu in a restaurant - unless I'm at a very expensive restaurant.

I'm pregnant and planning on keeping my son gluten-free for the first year before I even introduce gluten. I can guarantee you I will be bringing food for him and everyone will know not to give him anything to eat unless they check with me first. Hopefully, he won't have celiac, but if he does those rules will continue to apply.

I think the bigger issue is how you feel about making all of his food. Personally, I prefer to make my own food because I know it is safe. When we eat at a family member's house I feel lucky that they don't care that I brought my own food. So, as long as you don't feel put out or upset by having to bring his food, then I don't see a problem with it. And, as long as you try to make him feel "normal" or at least not weird about having to eat special food, then you are doing him a favor because he is always eating safe food.

In the beginning there is a huge learning curve and you will find what works for your family and doesn't make your son feel left out. Please don't let anyone make you think that you are over-reacting when you are just trying to keep your son healthy.

Good luck and I hope he feels better soon.

[JennyC]

Thanks for the replies. It's good to feel that I'm not alone, and that other people are going through the same things. I definitely don't want my son to feel weird. I make my best effort. He is not in school yet, but he goes to in-home daycare. I try to bring gluten-free products that mimic what the other kids eat. I do trust his child care provider...for the most part. She's great. I feel like I should be giving her a raise!

[HawkFire]

What's more important- the feelings of well intentioned friends and family or the health of your child? It seems like an easy answer when phrased this way, doesn't it? My solution is to keep it simple. Graciously thank the well intentioned friend or family member who went the extra mile for your child. Then decline the offering with the sincerest apologies for not making it crystal clear that your child cannot have food prepared without your first having been consulted as to every ingredient. If you don't establish boundaries then you will always have this issue.

[Ursa Major]

Barb, I just looked through the thread again, and you must have posted just before me, and I didn't initially see your reply.

I just want to mention that your daughter's initial tTg was very high, and it had come down considerably at the seven month mark. It takes a while for the numbers to come down to normal, so it is possible that only the vitamin E was a problem (which wasn't good), but that otherwise you were doing just fine.

I hope her numbers will be normal at her next checkup.

[Cam's Mom]

Thanks, Ursa, for the re-assurance! The GI we go to seems knowlegeable but has questionable bedside manner and was rather harsh at reprimanding us for our "apparent lack of understanding" that he believes is cause for her high 7 month tTg. He said that the test is only a snapshot in time and not a good indication of a trend and would therefore not let us know if that number is "coming down". It seems to me, from what I've read, that it could take many months for the levels to come down to normal but he thinks otherwise.

I took Camryn in for another round of blood work this morning (and thankfully she didn't pass out this time!). So now I am just staring at this message board and praying for some devine revelation!

Thanks again!

barb

[ryebaby0]

Oh goodness, gluten-paranoia is so incredibly normal! After a long time, you won't feel like this, but with all the stress newly diagnosed families have to deal with, it's just easier to do it all yourself Over time, your son will learn about what he can and cannot have, and that will enable him to feel normal because he won't need YOU there all the time. Don't feel sorry for him! He's gonna have a perfectly normal life, full of soccer and video games and soda and chips and Hershey bars

After you are more used to this, you can start answering the well-intentioned family/close friends with a printed list -- brand specific, etc.--- so they CAN be helpful. But right now, your convenience and peace of mind are more important than other people's need to be helpful.

joanna

p.s. Barb? My son's tTg took almost an entire year to even approach normal, and our peds GI felt that was to be expected....

[taweavmo3]

Everyone gave you great advice already! The only part I have to add is that I think there is always going to be someone who thinks you are going overboard, unless they actually see the aftermath of a glutening. Most of my husbands family does not understand, and they think I'm paranoid about it. At a birthday party, my sister in law asked if Emmie could have "just one bite". I think if they ever actually witnessed dd throwing up for hours on end from one bite, they wouldn't ask anymore, lol.

I am admittingly paranoid about what my dd eats, b/c we all suffer if she gets glutened. The moodswings are the worst, and it has everyone walking on pins and needles. So I bring her food everywhere, and the only place we eat out is Chick fil a. It's just become normal for us now, I don't even really think about it. The only stressful time comes if I haven't gotten myself organized, you really have to plan things out with this diet. There is no more spur of the moment dinner run for take out. But I do keep a stock of Kinnikinnick frozen pizza crusts for dinner in a pinch.........those have been a lifesaver many times!

Oh, and really don't stress about him feeling weird. I have an 8 year old who is also gluten free, and he hasn't had any problems with other kids. They do ask why he's not eating what they are, but 99% of the time, they want what he has instead! They think he has the "cooler" snack. He realizes how he feels if he eats gluten, and it really isn't a big deal to him. We've had several discussions about it, I told him that ultimately it is up to him to make the decision for himself. We talked about how all kids have something they have to deal with......like his best friend with asthma. That seemed to help him understand it, and I've been surprised at how compliant he has been.

Good luck with everything!