Gluten-free kids with nutritionist Kelly Dorfman

Feb 21, 2013

Kelly Dorfman, nutritionist and author of "What's Eating Your Child," joined us to talk about transitioning children to a gluten-free diet.

Hi, and thanks so much for joining us today. I'm excited to have Kelly Dorfman, author of "What's Eating Your Child" here to answer your questions about gluten-free kids. I'm considering trying gluten-free with one of my children, and interested in hearing what readers have to say about their experiences.

Greetings lunch time gluten free kids forum.  I am about to start answering questions.  Kelly

Why is it that some people are so resistant to not eating gluten?

I think it comes down to change being hard (especially long term), people being emotionally attached to certain foods (which has to do with their personal history) and the fact that nobody likes to be told they cannot do something!

I have celiac disease, my son's pediatriation doesn't think my son should be tested because he has no symptoms. Should we put him on a GF diet?

If your son does not have symptoms, I would not restrict him unnecessarily.  True, he has a higher chance of having gluten issues because of your situation and so you should be watchful. Also, you can keep him 'gluten light' to keep his exposure down and possibly reduce the chances of him getting the full blown disease.  Your household likely has less gluten foods anyway because of your situation so this can be a natural and easy thing to do without making restrictions.

What tips can you offer parents of kids with celiac disease or food allergies to help teachers or day care providers avoid cross contamination at lunch or snack time? Also: Hi Kelly!!! This is Ellen Wilcox! Amber (Bamber) says hi! She's majoring in Public Health at U of MD and works part time at Little Acorns day care! Hope Tory is well!

Hi Ellen!  Glad to hear the family is doing well.  I think it is tricky with daycare and school providers because we cannot expect them to know as much (or care as much) as the person with the sensitivity.  I think the key is to develop a good relationship where they are not feeling criticized or controlled so they feel free to ask questions and communicate their concerns. I have seen situations where school employees develop a "don't ask, don't tell" policy and hope they do not get caught giving something wrong. 

 

If the situation is very touchy, you need to bring all snacks/meals/treats  and ask them not to give any other foods to the child (without asking first).  A doctor's note helps give this request gravity so they do not feel like the 'poor child' is 'being deprived' but that they are doing something supportive to help.

 

My grandson has headaches off and on all the time. Could this be caused from Gluten foods?

Short answer- yes.  It is one of the neurological symptoms of gluten intolerance.  However, there are many, many reasons for headaches (including low blood sugar, vision strain, tension/anxiety, etc.) so I do not want to give the impression that gluten-free living is the answer to all that ails you.

Fellow RD here :-) Great work! Please emphasize to your readers the role calories play in a GF diet -- I see frustrated patients who feel misled by popular press/ famous actresses touting GF for "health reasons".....yes, it has its place but GF is not necessarily a good strategy for weight loss

Greetings fellow nutrition professional and thank you for that important point.  It is not just reality stars like Kim K. tweeting, "gluten free is the way to be" but many low carb weight loss diets take out gluten and sugar as a weight loss strategy. It is not clear that gluten, per se, is the problem with weight gain in all cases (though some people find eating it increases cravings).  However, reducing calories usually does help weight loss so if you are skipping bread with your meals and empty calorie snacks, it does make sense.  If you take out gluten based bread and just substitute gluten free bread or pasta or whatever, I think that is often worse.

 

Gluten free products designed to taste like 'the real thing' (breads, pizza crusts, pasta) are often made with starches of dubious nutritional value.  Rice and potatoe starch based food are not a healthy substitute for their  gluten- containing breathren.  I think you make a good point that you need to look at the quality of the whole diet and not just demonize gluten.

My 11 year old son has been eating GF for the past 3 years. He handles it beautifully and I have grown into a better cook for the entire family because of it. Now, suddenly he is showing a new sensitivity to dairy. It has been dramatic in that any food with a trace of dairy disrupts his GI tract for 24-48 hours. Is this connected to his body changing hormonally and will puberty create further problems with his food allergies?

In my experience, most people who cannot handle gluten also cannot handle lactose (the sugar found in milk products).  Most can handle yogurt or cheese but you are saying your son cannot handle even trace amounts of proteins.  I would need to know more info but off the top of my head (so please take this with a grain of salt) my guess is that you have removed the irritant (gluten) but have not done well enough with healing the underlying issue.

 

The analogy I use for this is that if you take the nails out of your driveway, your tires stop getting new holes but you do not heal the old ones.  In theory, a live biological system should heal but sometimes just removing the irritant is not enough.....especially with the pressure of puberty (and increased growth) on the system.

 

You may want to find a medical professional familiar with these issues and consider digestive enzymes, probiotics and nutrients to heal the gut lining.  I don't like the idea of having to restrict more and more foods.  In my view, that symptom is a call to do something else.

 

I hope that helps and good luck.  Your family is likely enjoying your improved cooking skills!

Hi -- what's the deal with oats? Other than cross contamination issues, do some oats have gluten in them or not? Thanks.

Thank you for asking this question!  I can't believe more people don't find it confusing.  Oats have gluten. However, there are many families of gluten and the type of gluten in oats is not in the exact same family as wheat/rye/barley gluten.  As a result, many people with celiac disease can handle pure oats.

 

So when you see a package that says 'gluten free oats' what it really means is wheat gluten free oats.  Oats are full of gluten (and you might be able to handle them if you are gluten free anyway). 

If a person does not have diagnosed celiac, how careful do you have to be about cross-contamination?

It is all trial and error (or trial and terror as I like to say).  Some people with non-celiac gluten sensitivity are as sensitive as those with celiac disease.  Usually people with gluten sensitivity are not as sensitive as celiacs and do not have to worry about minor ingredients or cross sensitivity. The only way to know is to play with it and see who you are.

My son tested positive for gluten sensitivity but he is so resistant to his diet and he hates that he's not supposed to eat the things he used to. Even breads like Udi's he probably should not eat because of the yeast but so many of the gluten free products are not tasty. It's especially hard when we go to church because they offer snacks like bagels and pop tarts. He knows he's not supposed to have them but I think he does anyway. How to get around this?

This is tricky because you do not say whether or not he is doing dramatically better not eating gluten.  Many tests for gluten sensitivity are prone to false positives so you have to consider the clinical picture when interpreting them.  There are not great tests for gluten sensitivity except to go off gluten and see if symptoms get better.

 

To follow-up with the last question, it is possible that he can handle a little gluten ( once or twice a week) even if he is sensitive or you could find his behavior or digestive symptoms get much worse when he does.  Since you think he is cheating but are not sure, that suggests he can handle a little here and there.  Being flexible , when you can (because it is not celiac disease) goes a long way in helping kids feel better about trying a diet.  Though I am not a fan of pop tarts, I would consider letting church be a time when he can have one treat and just see how he does. 

Why do so many gluten free products, e.g. cereals, crackers, have so little nutritional value? Can you recommend some products or alternatives?

I love this question!  The absolute best gluten free foods are the ones that are naturally gluten free anyway.  Chicken and rice, steak and potatoes, quinoa, corn based tacos, even frozen yogurt are often better than the gluten free substitute baked goods and pasta. Rice, quinoa, millet, wild rice, potatoes, sweet potatoes and corn are all gluten free grains that are nutritious.  Then there are all the nuts, seeds, beans, fruits, vegetables, meats and cheeses.  They are all good.

My son has been celiac for almost 10years, and keeping his weight up is a constant challenge. Despite butter, whole milk, and avocados, there just doesn't seem to be a route to success for him. He's 19 now -- 5'10.5" and weighs about 127, has never been above 130. Ideas for a worried mom?

I feel your pain.  Yesterday, I dealt with a family with a 6 foot son who is also 130 pounds.  It is so hard (for moms, in particular it seems).  In nutrition, absorption is 9/10th of the law.  So, you are avoiding the irritant but it sounds like he has not healed his gut lining enough to improve absorption.  In theory (and if all the stars align) two years of gluten free living should heal the lining.  In practice, I have seen people 10 years out who are not healed completely or absorbing optimally.

 

You might want to talk to someone about digestive enzymes (there was an old study done at Stanford, I believe, that found they could be useful in celiac disease), extra zinc (for helping the gut lining) and possibly probiotics.  These are all substances thought to help with the process (and certainly should not hurt).

 

Good luck.

My 11 yr old son has shared that he feels so alone having to eat GF especially in class where he is the only one in the class with gluten sensitivity and all the other students are aware. While the classmates are kind about it, Evan wishes he could talk to other kids like himself. We have make a website and facebook page for kids and would like to create a blog for all kids to be able to communicate with each other but unsure how to go about it. We thought that parents seek support with one another, wouldn't it be helpful for the children too? Any ideas would be helpful! (Please visit us and tell us what you think would be helpful. Thanks so much! EvansEdibles.org)

This is a great idea.  If the rate of celiac disease is one in 100 and gluten sensitivity is estimated to be 4 to 6 times that rate, there has to be other kids in Evan's school on this diet.  He just has not found them.  The school counselor (with permission) or someone in the front office might be able to connect him to the other kids.  He might be able to put an announcement in the PTA bulletin (they are always looking for space fillers) or other school publications looking for contacts.  I know there are some groups online but I hestitate to send a young child out to the ethers with a general request.  Too many chances of running into undesirable elements.  Celiac.com may have some resources or chat rooms but I am old fashioned and would prefer a one to one introduction to start.

 

The kids are out there and in fact, there are several families online right now with kids this age.  Anyone interested in connecting with Evan?

I think there should be an emphasis on the NEED of a Gluten Free Diet. It's fine if that is what the doctor ordered. However, right now, it seems to be the "in" thing to be Gluten Free when it's not necessary. Agree?

There is a little bit of the 'latest thing' going on here with gluten free living.  I agree.  However, without a tight test for non-celiac gluten sensitivity, waiting for your doctor to point it out could be an exercise in pain and frustration.  I have a long list of horror stories I could share (but won't).

We had so much great information for our printed pages we just couldn't fit it all in and the Web site gives us a great place to share it with our readers. The magazine goes on sale on newsstands Feb. 26. You can go gluten-free. Paper-free is impossible though.

Thanks for sharing this resource with families!

Hi-- I have celiac and my husband and I do not keep gluten in the house. When we have kids, our plan is to continue to keep our house gluten free because crumbs from toddlers hands will be sure to make me sick. The question is whether it makes sense to keep our kids off of gluten outside of the house. Do you see any harm of keeping non-symptomatic kids gluten free until they are school age (old enough to learn to wash their hands after eating gluten and old enough to express if they are sick). I don't want to deprive healthy young children from social experiences like birthday parties, but I don't want my kids to have diagnosed celiac either.

We don't know the answer to this question yet.  As mentioned before, there is a higher chance that any biological children you have will have celiac disease if you have it. The data on gluten sensitivity is not in yet since we don't even have a decent test. 

Nobody has asked why so many people seem to be gluten sensitive, but as wheat plants have changed under the ministrations of geneticists, the proteins seem to be getting more reactive.  Lots of kids without gluten reactive parents seem to be having trouble so we know the food world is changing and we have not caught up with the changes yet. (And perhaps we should be more conscious about the changes we are making and their possible long term effects.)

 

Obviously, we do not want you or your husband to be sick by being exposed to gluten through your kids.  In terms of their health, there are two schools of thought about offspring.....one is that you should expose them to some gluten early so they are not too clean and can tolerate it.  The other school says you should stay very clean to increase their chances of tolerating it.  (However, this applies mostly to kids who have already shown signs of reacting to something like peanuts.)

 

I am a fan of the 'dirty' school which says if you can tolerate it, you should have a little to keep tolerance up.

 

Good luck,

Thank you for all of your excellent questions.  I wish I could answer them all.  Perhaps we can continue the conversation at another time.  Let the Post know you need more info!

Take care,

Kelly

In This Chat
Kelly Dorfman
Kelly Dorfman is a nutrition detective who works with medical professionals around the country to help people with complex ailments and symptoms.One of Kelly's special interests is children. Her book, "What's Eating Your Child? The hidden connections between food and childhood ailments," was published by Workman Press in June 2011. Kelly has a master's degree in nutrition/biology and is a licensed nutritionist dietitian in Maryland and the District of Columbia. She lives in Maryland with her husband and has three children.
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