Going Gluten-Free? 5 Reasons It’s Challenging

Going gluten-free or dairy-free can help relieve symptoms that are common in kids with special needs. The autism diet can have benefits, but it’s not easy. Part of my mission is to help parents with kids that can benefit from this diet.

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As far as I can tell, that means everyone who has tried this lifestyle.

If you have a child with autism, you may have heard the term “leaky gut” before but are uncertain what it means. In fact, unless you are seeing a pediatrician that supports a biomedical, nutritional or alternative approach to treating autism, your medical doctor may not acknowledge it. According to Dr. Andrew Weil’s site, leaky gut is “damage to the intestinal lining, making it less able to protect the internal environment as well as to filter needed nutrients and other biological substances.”

As for me, I’ve met and befriended moms who have resolved many or all of their child’s autism-related symptoms using food interventions that address the leaky gut, specifically removing gluten and casein  (cow milk proteins) from their kids’ diets.

• Gluten is most commonly found in wheat products but can be found in anything from barbeque sauce, to soup mixes, to nut milk. It also depends on how sensitive your child is – a single molecule can throw their whole system off.
• Casein is a type of protein that is found in the milk of mammals (such as cow’s milk) and in all related products made from that milk unless the process has removed the caseins.  (Clarified butter, or ghee, is one example of butter made from cow’s milk without caseins.)

Going Gluten-Free? Here’s The Science:

A few years ago, I heard Dr. Alessio Fasano, an expert in leaky gut, discuss the condition and what it means for kids with autism. According to Fasano, indigestible gluten produces zonulin, a protein molecule that causes tiny leaks in the intestines that allows gluten through. This can also be impacted by gut bacteria.

For kids with this condition, toxins would normally process out of their bodies get stuck in the digestive system and cause damage.  Some doctors, like Dr., Kenneth Bock, author of “Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders“, believe that autism in some cases can be attributed to leaky gut.

Not only this but gluten can cause a host of other issues, including affecting neurotransmitters and having a negative impact on serotonin, dopamine, acetylcholine, epinephrine, and histamine, plus having a neurotoxic effect on nerve tissue. See more at Dr. Fasano on Leaky Gut Syndrome and Gluten Sensitivity.

Learn more from Dr. Fasano’s book, Gluten Freedom: The Nation’s Leading Expert Offers the Essential Guide to a Healthy, Gluten-Free Lifestyle.

So, that’s the skinny on gluten, but why remove caseins? According to this article on FailsafeDiet.com,

Gluten and casein intolerances often occur together because they seem to be caused by a sensitivity to opioid-like peptides… Opioid-like peptides act on endorphin receptors throughout the body and can cause problems such as aches and pains, headaches, lowered pain threshold, digestive problems, nausea, abnormal hunger, motivational problems, mental/behavioural problems, brain fog, irritability, weight problems, cravings, and histamine release.

In fact, many people with gluten intolerance or sensitivity (which is not the same as Celiac disease) later discover they are also sensitive to dairy – and vice versa. It’s a good idea to read that entire article, which is very enlightening.

That said, going gluten-free and casein-free is quite a tricky business. You need to get enough out of your family’s diet enough for real healing to take place. Let’s look at some reasons why:

1. Gluten is in everything.
   Like some kind of toxin fairy dust, gluten can land just about anywhere. I’m not sure why they need to be in packaged foods such as salad dressing or hummus but they are in some brands. Unless the product you are buying specifically says that it is made in a gluten-free facility, your food may have gluten molecules that it acquired from the dust of other products.
2. Gluten-free doesn’t always mean completely gluten-free.
   I discovered that Rice Dream milk is processed with barley, which means it is not 100% gluten-free, but enough to meet the standard.  (Read Rice Dream’s customer response here.) Given how lax U.S. standards can be, I can see real trouble with the gluten-free label as well.
3. For the autism diet to work, kids need to be 100% gluten and casein free.
   100%. Not 80 or 90 or 99%, 100%.  Not 20ppm, the standard for gluten-free labeling, but maybe even much less than that. And, as you can see from Dr. Fasano’s information, a few molecules are enough to do real damage. That means an error, an infraction, a product that no longer is 100% gluten-free and that can derail your child’s progress.
4. Kitchens need to be 100% gluten-free and casein free.
   Do you have a houseguest who snacks on gluten-filled products? Do you store them yourself? Eat at restaurants that do not even claim to separate cooking their gluten-free products? Cross-contaminate your toaster? These are all deal-breakers for the gluten-free diet.  If grandma likes to give French fries made in a restaurant that has no gluten-free claims whatsoever, it’s time to shut that down. I like to think of the way that Kosher parents run their kitchens: everything is separate.
5. It’s easy to overlook gluten and dairy in non-food products.
   Gluten and casein can also be found in products: Play-Dough (my school just stopped using it), shampoo, soap, cleaning products.

Looking at the list above, I’ve made every single one of those mistakes, multiple times. I reached out for help in the past to one of my support groups, complaining that my child had not made the great strides that other kids have while going gluten-free, and I was worried. A friend enlightened me: if you’ve seen minimal changes but nothing major, perhaps gluten or casein is still getting into your child’s diet.

This then may be why so many professionals have told me that the gluten-free diet “does not work much.” Believe me, after a year casein-free and nearly 8 months gluten-free, it’s still very hard to keep every bit of these elements out of my kids’ diets. I cook daily, read labels every time I shop, hide or do not buy products with the offending materials, and have made a number of other lifestyle changes, and still there are times when my kids run so fast to a piece of bread or butter that I cannot stop them in time, even when I provided a number of delicious items that are free and clear of gluten and casein.

6 Easier Ways of Going Gluten-Free

So, how you can you conquer those challenges? Let’s take a peek at what we can do to avoid the common traps and trip up’s of going gluten-free and dairy-free:

1. Know Your Limits.
   How much gluten can you stand? How much should your child have? 20 parts per million (ppm) is considered gluten-free, but unfortunately, that may be too much for certain people.
2. Clear Out Your Kitchen.
   You have to think about this on a small, small level – like crumbs. That means toss out your toaster OR buy a separate one for gluten-free foods if you are still going to buy gluten-filled foods. This also means cleaning out your oven and refrigerator, physically, and if you eat in different parts of the house, a thorough deep clean. Next set up rules about where you can and can’t bring food. Now you may want to get a microfiber cloth, like Norwex or e-Cloths, but keep in mind they do contain plastic, so you may be adding in toxins.
3. Eat Out with Caution.
   Cross-contamination Ask a lot of questions when you are eating out! There are key questions like, “Do you share the fryer with French fries and breaded food products?” “Do you clean the grill separately for gluten-free items?” You should also be talking to a manager or head chef, for places that don’t have a regular policy in place. As of this writing (2/10/16), the only place we trust is Red Robin, which uses “allergy kits” so as not to cook on contaminated surfaces.
4. Research Trustworthy Products.
   Make sure that a product is certified gluten-free, is free of dairy and the many terms that can refer to dairy (like anything with “casein” in it). Research a product website or call the manufacturer. You’ll also want to make sure they are made in a dedicated facility or take other measures to prevent cross-contamination. Once you have a list of trusted “safe” products, keep buying them, but
5. Forego Packaged Foods.
   By “packaged foods,” I mean those that come in a box, jar, or frozen and you just heat up. I realize this means baked goods. It’s really challenging to be gluten and dairy free (and, like some of us, soy, corn and artificial anything free) unless you bake your own. This, I realize is a process – I don’t expect you to clear out your cupboards and radically alter your
6. Investigate Your Bath & Personal Products
   So now the hard part: investigate your bath and personal care products. They may contain milk or gluten. Now, there is some debate as to whether or not these products absorb into the skin and enter the body in a way to make a difference. That said, if you’ve made all the other changes and are still not seeing a change, go ahead and look into these products. Additionally, traditional brand products contain lots of toxic ingredients, including fragrances, so you may want to consider cleaner choices (organic, DIY, etc.) in any case.

Kids will be kids. We are the adults and have to make the hard choices to stay home more, cook more, police their habits a bit more intensely. It’s the least we can do to help recover their brains.

Share with us: What kinds of challenges have you faced in going gluten-free and casein-free?

For more tips, read:

• 9 Steps to Preventing a Diet Infraction
• Detox Your Kids from Holiday Food Cheats
• How You’ll Benefit from Going Gluten Free Too

Originally posted on 2/14/12