If you’ve walked down the supermarket aisle lately, it seems like a new, tasty, gluten-free food crops up every other week. But when your child has food allergies or a severe allergic reaction to gluten, like a rash, hives, or worse, this health “fad” (gastroenterologists have railed against the food for people who have no medical reason for it) is a true godsend. Plus, your kid can feel like a cool Instagram influencer with their special diet instead of self-conscious at gatherings with friends.
However, it’s important to note people often get confused when we talk about gluten allergies. A lot of time, what is referred to as a gluten allergy is actually celiac disease — an issue for a GI doctor and not an allergist. Yeah, when it comes to gluten — or rather, wheat allergy, there’s just a ton of misinformation on the internet (it’s the internet after all).
“Foods can cause a lot of different types of reactions but you’re going to want to put those reactions into different types of bins and separate them,” Dr. Tricia Lee, an allergist working out of New York City said to Scary Mommy. So we’re here to help you demystify the world of gluten and wheat allergies, with some help from an expert in the field.
What is a gluten allergy?
What you think of as a gluten allergy is more accurately a wheat allergy. An allergic reaction usually occurs when your blood makes an allergic antibody to the protein in wheat.
How do you test for a wheat allergy?
“Specifically for wheat, my skin and blood test can predict immediate life-threatening reactions to wheat,” says Lee.
What are the symptoms of a wheat allergy?
The symptoms for a wheat allergy range from a rash, hives, and nausea to vomiting. More severe reactions can also manifest in trouble breathing and even anaphylaxis.
So what’s the difference between a wheat allergy and celiac disease?
“Celiac disease is an auto-immune disease that you diagnose with a blood test and a scope by a GI doctor,” Lee explains. “Treatment for celiac disease is then in the purview of a GI doctor — because they’re the ones who are doing the scope,” she says.
What about food sensitivity?
“The concept of food sensitivity is a little bit of a catch-all statement. In the sense of in a week’s time in my office, I will have a patient come in saying wheat causes them to bloat, one will say wheat causes them to have acne.”
Lee adds, “I’m not really questioning whether wheat is causing that symptom or not because if they’ve seen it and it’s been very obvious to them then I trust that statement. She explains experts have no way of testing for gluten or wheat sensitivity.
Lee knows these symptoms cause her patients discomfort and pain and aims to manage them. However, unlike with allergy or celiac disease, “I don’t know that it is causing any long term harm or concerns and certainly, there is not that acute concern with those who have an immediate life-threatening reaction.”
Can you test for gluten sensitivity?
Unfortunately, there’s currently no FDA-approved test for food sensitivity.
People like to think that our food allergy testing can answer multiple different types of question and it can really only test immediate life-threatening reactions. “When I’m doing the test I’m specifically asking the question of ‘do you make an allergic antibody to the protein in the food?'” Lee says.
“The problem with skin testing is you can get a lot of false positives, so for example if I go to the local mall 10 percent of those people have a positive test to the skin test but they eat it and they’re fine with it,” Lee explained. So testing is not the end all be all and certainly, it’s not 100 percent diagnostic in the sense of if you test positive you’re not going to be able to eat it. A positive just means you make an allergic antibody to it — and for some of those people, they are going to have an allergic reaction. But it doesn’t answer the question of celiac disease or sensitivity.
Wait, but I found a food sensitivity test online!
“If you Google sensitivity testing there are a million different websites with a lot of different tests, [but] none of those tests are validated to prove that a positive always means this and a negative always mean this. None of them have gone through rigorous research.” Basically, none of those tests have been confirmed by doctors or the FDA to work.
So why is it so hard to test for food sensitivity? Well, as Lee explains, “right now, that concept of food sensitivity, it is such a broad spectrum when you think about it from a mechanism perspective in the sense of you really have to know the mechanism before you can have a test. There’s no way it’s the same mechanism when wheat is causing someone to have acne and causing another person to have to bloat. There are probably different cells in the body that are causing these issues. So even if we do ever have a test to predict those things they will be different tests.”
Should you avoid gluten if you have gluten or wheat sensitivity?
“For those patients, I don’t know that strict avoidance is near as important if they accidentally slip up or if they’re in Italy and the only thing for them to eat is pizza or pasta then I think it’s OK for them to cheat and I don’t think they’re causing any long term harm to their bodies. That doesn’t mean that it isn’t causing them significant discomfort. It just means that it’s not life-threatening.” In Lee’s experience, most of those patients are adults.
What are other negative reactions can you have to wheat?
There are other negative reactions you or your child could have to gluten or wheat. Lee says wheat is one of the top three foods to exacerbate eczema, along with milk and eggs. However, again, there’s no way of testing for a sensitivity right now.
Gluten can also cause food protein-induced enterocolitis, also known as FPIES. FPIES leads to delayed vomiting or diarrhea around two hours after you’ve consumed wheat.
It can also cause eosinophilic esophagitis — EOE, which would lead to reflux-like symptoms. With “immediate life-threatening reaction [like] FPIES and EOE, we are strictly avoiding the food,” says Lee.
Ok, one more time: what’s the difference between a gluten allergy, gluten sensitivity, and celiac disease?
Just to summarize, gluten or wheat allergy is an immediate life-threatening reaction to wheat. That means you can test for it with a skin and blood test. People with a gluten allergy are usually treated by an allergist.
Gluten sensitivity is a wide term used to describe adverse but non-life-threatening reactions people have to food. There is no FDA approved way to test for gluten sensitivity, but an allergist could help you deal with gluten sensitivity with a specially tailored plan.
Celiac disease is an auto-immune disease that causes your immune system to attack your small intestine. You test for it with a blood test and a scope. The scope and treatment of celiac is managed by a gastroenterologist.
How common are gluten allergies?
Wheat allergies are pretty rare. Some report that less than 1 percent of children in the U.S. have it. The majority of kids outgrow their wheat allergy.
What do you avoid eating if you have a gluten allergy?
All wheat products should be avoided, same for rye and barley. “Barley and rye are very much associated with wheat, and in fact it’s often really hard to get barley and rye products that haven’t touched wheat products so cross-contact is a concern,” Lee explains. Your allergist should also give you a list of foods to avoid.
Thanks to FDA rules, you can be pretty confident when buying food items labeled as gluten-free, which you can thankfully find in almost every grocery store nowadays.
Can you eat any kind of grains if you’re allergic to wheat?
Yes, there’s plenty of other grains that wheat allergic patients can usually eat: “oat, rice, corn, and the non-cereal grain, quinoa, buckwheat, etc, a lot of times those wheat allergic patients are at least able to eat those other grains,” says Lee.
How do I treat a gluten allergy?
So far, there is no FDA-approved way to treat food allergies aside from strict avoidance. So yeah, the way to treat a wheat allergy is to take wheat off your child’s menu. The good news is that you can make grilled cheese with gluten-free bread and that there’s gluten-free mac and cheese. The food options are so much more varied than they were even 10 years ago.
When and how do I expose my child to wheat products?
Like other allergenic foods, wheat products should be introduced when you start solids, around the 6 to 9 months mark. According to the LAIP study, early introduction could help you avoid allergies. Luckily, as we all know because our parents keep nagging us to put it in our children’s bottle so they sleep through the night, wheat cereal is totally a thing and an easy first food to give.
Can a child grow out of a gluten allergy?
Yes, and in fact, according to Lee, the majority of kids do outgrow it!
How do you treat celiac disease?
The way to treat celiac is first and foremost with strict avoidance of all wheat products. But you should always confer with your doctor for a treatment plan that is tailored to your needs.
Can a child grow out of having celiac disease?
No. Unfortunately, since celiac disease is not an allergy, it is impossible to outgrow.
Is it possible my child has gluten sensitivity?
That is certainly within the realm of possibility, but again, there’s not a FDA approved way to test for that right now.
So, just to recap, is gluten bad for us?
Gluten and wheat products are definitely very bad for kids with wheat allergy and celiac disease. But despite the demonization of gluten, Lee says it’s actually good for you. “Those who are avoiding gluten for other minor concerns — it’s actually not healthy and can cause cardiovascular concerns.”
How do I talk to other parents or party hosts about my child’s wheat allergy?
We get it, no one wants to be any trouble when it comes to social occasions. But etiquette can go screw itself when it comes to your child’s health. You should never feel uncomfortable making special requests — as long as they’re not outlandish — at celebrations or family get togethers. If your child has playdates at a friend’s house, it’s not much to ask the other parent to perhaps offer wheat-free food or to serve the food you send along with your little one. You’re giving others a heads up, not making crazy requests.
The best course of action is to keep the conversation simple and do it enough ahead of time that they can make the necessary adjustments. Luckily, you might find this is not a big deal at all with other parents as nearly all daycares and schools are already allergen free. And with so many regular or specialty bakeries offering flourless cakes, cupcakes, and other party food, it’s really no trouble at all.
However, you might find elderly relatives need a little bit of hand holding on this one. The CDC reports that the rate of food allergies in kids has increased a staggering 50 percent between 1991 and 2011, so folks with adult children might need some more clarity on your child’s needs.
How do I talk to my child about their food allergy?
Unlike their parents, kids don’t always have the vocabulary necessary to express how they feel physically or emotionally about their food allergy. Which is why it’s all the more important to talk to your child about their food allergy in a simple and direct manner, all while keeping the child’s age in mind. No matter their age or maturity, you never want to unnecessarily scare them or downplay the seriousness of their situation and medical needs. Most importantly, when speaking to younger kids, use age-appropriate talking points like the following:
— You have a food allergy, and anything with wheat can make you feel very sick. Use simple terms like “safe food’ and “unsafe food”.
— Don’t have food that has not been approved of by mommy or daddy.
— Tell us or your teacher if your tummy hurts, you don’t feel good, or feel funny.
— Teach them what foods will make them sick, pointing them out during a trip to the supermarket.
Parents can also utilize resources like books, videos, games, apps, and music that have been specifically tailored to teach kids about food allergies. For example, the American Academy of Allergy, Asthma and Immunology has created a Mr. Nose-It-All character to help children understand and identify their allergy and symptoms through play.
What are some resources for parents of children with food allergies?
For parents of children with food allergies, finding a like-minded community of parents who are also living with a food allergy in the house is imperative. That extra support that they may not get from their child’s pediatrician and allergist can make the day-to-day navigation a little bit easier. Which is why joining an online community or Facebook group for parents with children who have allergies can help identify resources, doctor recommendations, and even recipes. With so many Facebook groups out there, you might even find one that is specific to your child’s allergy.
Food allergy podcasts
Looking for a little more non-medical guidance? Thankfully there’s an entire world of food allergy podcasts parents can turn to for more information on day-t0-day living. Here are just some that might help:
Conversations From The World of Allergy — This podcast from AAAAI is an invaluable source of official information for parents figuring out school, play, and life all while they deal with their child’s food allergy. With experts and guests offering tips and advice, it’s not meant as individual medical advice, but as examples of what has worked for other families and what might work for you. Per the podcast’s official website: “This podcast is not intended to provide any individual medical advice to our listeners. We do hope that our conversations provide evidence-based information.” All specific medical queries should obviously always be addressed to your child’s allergist.
Exploring Food Allergy Families — This podcast touches on the realities of living with food allergies and its impact on the physical, mental, and emotional health of all involved. With tips and hacks offered by the show’s host and guests, it could serve as a helpful resource for parents.