Gluten Free – Helpful or Hype?

The special needs world comes with a plethora of acronyms and abbreviations. From diagnosis (ASD, ADHD, PDD-NOS…) to education plans (IEP, LRE, BIP, ESY) to dietary interventions (GFCF, LOD, SCD), parents can easily become tangled in a chain of letters. Perhaps the most common abbreviation that has made its way into the mainstream is GF, or gluten free. Gluten is the general name for the protein found in certain grains.

Gluten contains gliadorphin (GLY-ah-DOR-fin), which is a by-product from the digestion of gluten and a substance that resembles morphine. It can be problematic in the presence of gut permeability and/or enzyme deficiencies and maldigestion. When highly problematic, some children exhibit autistic-like behaviors. While not a cause of autism, gluten in certain individuals can exacerbate underlying health issues.

Where Do I Shop?

A mere decade ago, looking for gluten free items in a traditional grocery store was a fruitless search. Now, entire aisles are dedicated to GF foods, and major chain restaurants offer gluten free items or even entire GF menus. There are cookbooks by the dozens that focus on GF meal prep. (A personal favorite: Cooking for Isaiah by Silvana Nardone). Even bakeries across the country offer treats made with alternative grains.

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So what’s changed, and why all the buzz about gluten free? What started as a fad may have evolved into a norm as more people tried ditching glutenous foods and found they felt better. Also, it seems that parents of children with autism who were willing to try just about anything to alleviate their child’s symptoms turned to GF (and sometimes CF, or casein free) diets. As their children looked healthier, slept better, and experienced less abdominal discomfort, the word spread about going gluten free. But does this really work, or is a GF lifestyle just a bunch of hoo-ha?

Gluten Free Can Be a Lifestyle

Notice the reference to GF as a lifestyle and not just a diet. That’s because gluten is used in thousands of products including toothpaste, mouthwash, lip balms, soaps, lotions, some play dough, medications, and more. It might not be essential to go completely GF in the home, but, if a person is just that sensitive, or tests positive for celiac disease, then it makes sense to identify all possible exposures.

How do you identify gluten if it’s so pervasive in food and personal care products? Grains that contain gluten include wheat, barley, rye, semolina, bulgar, spelt, durum, triticale, couscous, kamut, and farro. Corn, millet, rice, and sorghum do not contain gluten.

Here’s where it gets confusing: buckwheat does not contain gluten because it is actually a seed. Be cautious about buckwheat soba noodles however, because some brands blend the buckwheat with wheat for texture. Wheatgrass, which is grown from wheat berries, is not glutenous if the kernal is discarded; the sprouted grass does not have gluten. And oats ? They are gluten free but are widely processed alongside wheat and other grains. To be sure, look for certified gluten free oats.

Allergy? Intolerance? Sensitivity?

It is crucial to distinguish a true food allergy from an intolerance from a sensitivity. Dr. Michael R. Lyon, M.D. explains this is his book Is Your Child’s Brain Starving?. “An allergy is defined in medical texts as a very specific and well defined type of adverse reaction of the immune system to a specific molecule, usually a protein.”

Allergy and hypersensitivity go hand in hand because the effect is immediate and include well defined symptoms such as hives or difficulty breathing. Intolerances are generally less severe and result in symptoms such as headaches, bloating, or irritability. These would be classified as non-immunological responses. Eating a food on a regular basis that triggers intolerance could promote a true food allergy.

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To Test or Not to Test

Is there a test that can determine if your child has intolerances and/or allergies to gluten or other foods? Yes. As Judy Converse, MPH, RD, LD, states in her book, Special Needs Kids Eat Right, “The choice is individually prioritized and is typically decided based on financial limitations, health care coverage, and issues at hand for the child.” But testing is not a requirement for going gluten free.

By keeping track of symptoms and food intake, monitoring growth and sleep patterns, and assessing (as a parent) cognitive ability and behavioral changes you can begin dietary changes without expensive lab fees. And, don’t be afraid to inspect the diaper or toilet after bowel movements! Poop is a great indicator of whether a child needs dietary tweaking.

Going gluten free can drastically improve some symptoms. If a parent tries removing gluten, then know that there should be a solid three month 100% commitment to this process. It takes about that long to have gluten molecules clear out of the body and begin to see differences in symptoms, behavior, cognitive functioning…and poop.

Good To Know

Other important tips:

• Gluten free means wheat free, but not all wheat free items are gluten free. Read labels and know your ingredients.
• French fries, although potatoes, are often coated with flour to keep them from sticking; always check packages and ask at restaurants.
• Soy sauce contains gluten, as do many vinegars. Again, do some research.
• “A little bit of gluten here and there won’t hurt, will it?” If you are trying to see if going gluten free will work, then yes, a tiny bit will hurt.
• Finding replacements for gluten doesn’t mean simply choosing other grains; sometimes grain itself is the problem. Starting by eliminating gluten is wise. Watch sugar intake.
• Digestive enzymes containing DPP-IV can assist in breaking down food. 

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Parents should read labels, restock their pantry and fridge as they gear up to give gluten free a try, record food intake and symptoms, and then relax and watch if, over time, this works for the child. If not, there is not much lost in those three months! If so, go forth in your gluten free world! It’s really up to you to decide if GF living is beneficial or “bull.”