Concerned Over Son Being Glutened And Not Knowing

[cdmom1]

Well, we are a few weeks into the gluten free diet for my son. For the most part, the adjustment is going well. My concerns are starting to grow, as we were away over the weekend. Most people seem to know when they have been glutened, some type of reaction to something they have eaten. They learn and are careful not the eat 'it' again. With my son, he does not have any reaction at all. He has never so much as had a stomachache more than 2 times in his 8 years, and it was virus related. He appears to be a typical 8 year old boy.

My worries are that he may be cross contaminted when eating out, or at a friends, and not know he is continuing to do internal damage. The only symptom he shows is that he is short, did not grow much over the past year. I am so afraid he may end up with accidental exposures and never get any taller! I feel that it is so hard without him exhibiting any stomach issues to know if he has exposure.

An example was this weekend we were away. We were at a Fridays, explained our situation to the server. We ordered a steak, which he assured us would be plain, no problem. He even came back and said they would clean a fryer and cook him plain fries which did not contain any gluten. He also had the broccoli.

Well, my son ate the steak and broccoli, not the frie ( only because he really isn't a big fry guy). I was so worried that the fries would have something wrong, then thinking the steak was probably cooked next to some gluten containing food on the grill. And, I would never know if he was cross contaminated since he does not react.

Ugh, I am so afraid that we try to be so careful at home, that something will happen since we eat out often. Then, come a year later, the blood will show he is still in Celiac mode. Am I being crazy? Anyone else not have the typcial symptoms? And, how do you find reassurance that you or your child is ok?

[Celiactapper]

The latest studies on children with celiac indicate that children with celiac oftentimes exhibit neurological/psychological symptoms when exposed to gluten, usually ADHD, clinginess, or depression. Does your son have a history of any of these conditions? If so, when he eats some gluten, he may exhibit such symptoms.

You sound ultra-careful about your son's condition. Over time, you'll relax. In the meantime, I would recommend avoiding restaurants that don't offer a gluten-free menu--this means that staff has not been trained in the proper preparation and serving of gluten-free meals. There are Websites that list the restaurants that offer gluten-free menus. One such list can be found at www.gluten.net . This is run by the Gluten Intolerance Group of North America, and they train and certify restaurants (including chains) throughout the U.S. Good luck to you and your son!

[cdmom1]

  On 8/9/2010 at 4:43 AM, Celiactapper said:

The latest studies on children with celiac indicate that children with celiac oftentimes exhibit neurological/psychological symptoms when exposed to gluten, usually ADHD, clinginess, or depression. Does your son have a history of any of these conditions? If so, when he eats some gluten, he may exhibit such symptoms.

You sound ultra-careful about your son's condition. Over time, you'll relax. In the meantime, I would recommend avoiding restaurants that don't offer a gluten-free menu--this means that staff has not been trained in the proper preparation and serving of gluten-free meals. There are Websites that list the restaurants that offer gluten-free menus. One such list can be found at www.gluten.net . This is run by the Gluten Intolerance Group of North America, and they train and certify restaurants (including chains) throughout the U.S. Good luck to you and your son!

Thanks for your input. This is the hard part- he shows no psychological/neurological signs at all. He is a really good kid, no behavior problems (except likes to argue with his sister, but think this is fairly common). Does really well in school, has a lot of friends, adjusts easily to new situations. Pretty even tempered overall, so really hard to know

I wish more restaurants offered a gluten-free menu! It would make being on the road so often much easier.

[Beth03456]

My son is the same way - no symptoms and he didn't grow for a year and was then diagnosed. Its hard to know if we have missed something or glutened him accidentally. As a result, we tend to be pretty cautious because we don't feel there is any ability to have trial and error. He could be having some sort of mental/behavior gluten reaction, but it could be just that he is a 4 yo boy. It doesn't help that we focused so much on asking "does your tummy hurt" at age 3, that he often says his tummy hurts now a year later, even if we are quite certain he did not get glutened. In fact, we think he says it when he is hungry at bedtime, because he often doesn't eat much dinner. Our child's GI tested him with the IGA TTG at 6 mos. post-diagnosis and his score was perfect, so we assume we are doing ok now. We still try to be as careful as possible though. Growth is our main objective right now, and we don't want that to get stalled again.

I also recommend going to restaurants with gluten-free menus as a starting point. They at least seem more aware of the issue. We went to Chili's once because they have a gluten-free menu and didn't feel comfortable ordering even a plain hamburger there. Luckily we had a couple things in the car to give him, and haven't returned. Most places are willing to cook a burger on foil or in a separate pan, in a pinch.

On the other hand, we went to a couple restaurants this weekend (Iron Hill Brewery and Ted's Montana Grill) with really good gluten-free options. Yes, he still just got a plain hamburger (he is just 4 after all) but they had sides that he could order and like, and that made a huge difference.

Good luck!

[Benshell]

I admit it..I'm an over controlling, overly cautious mom. It's been a year now and we still only eat at restaurants with gluten free menus. Most important point being is that the staff (cooks through servers) have been properly trained to avoid contaimination.

A year ago I called fridays and asked them about gluten free and I was told they cannot guarantee any of their food is gluten-free as it is pre-prepared off site and just cooked in their kitchen. THere is no way that the staff there could guarantee no contaimination, what seasonings were on the steak, breading on the fries, etc..

Check on-line or thru local support groups to fine restaurants in your area that offer a gluten-free menu. It will make your life so much easier filled with much less anxiety.

Our favorites are Outback and Uno's (chicago grill/pizzariea uno) and Cosimo's pizzeria. We also have a few local restaurants (upstate NY) that offer gluten-free menu's, but can't be found on line (just word of mouth).

good luck..remember..do what gives you the least amount of anxiety, it may be whats easiest!