Five Reasons it’s Difficult to go Gluten-Free and Casein-Free

It has not been an easy road going gluten- and casein-free, and I’m writing today’s post to help all of those of you who have had infractions while placing your child on this diet, to help ease disorders, such as autism and Down syndrome.

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

Let me start at the beginning.  Firstly, I’m not specifically discussing celiac disease or gluten intolerance, instead, I’m focusing on leaky gut.  If you have a child with autism, you’ve probably heard this term before, though unless you are seeing a DAN! doctor, your medical doctor may not acknowledge it.  According 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”.  Because of this condition, toxins that people without leaky gut naturally process 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.

As for me, I’ve met and befriended moms who have resolved many or all of their child’s autism-related symptoms using intervention that addresses the leaky gut, specifically removing glutens and caseins from the diet.  Glutens are most commonly found in wheat products, but all kinds of products contain glutens, like barbeque sauce, soup mixes, or milks. Caseins are 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.)

That said, it is quite a tricky business to get the glutens and caseins out of your family’s diet enough for real healing to take place. Let’s look at some reasons why:

  1. Glutens are in everything.
    Like some kind of toxin fairy dust, glutens can land just about anywhere.  Unless the product you are buying specifically says it’s  made in a gluten-free facility, your food may have gluten molecules that it acquired from the dust of other products.
  2. Gluten-free isn’t always gluten-free.
    I recently discovered that Rice and Almond Dream are 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 laxed the U.S. standard is now on the definition of organic, 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.
    Not 80 or 90 or 99%, 100%.  That means an error, an infraction, a product that no longer is 100% GF, 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 glutens?  Do you store them yourself?  Eat at restaurants that does not even claim to separate cooking their gluten-free products?  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 whatsover, it’s time to shut that down.  I like to think of the way that Kosher parents run their kitchens: everything is separate.  For a helpful guide on how to do this, check out Simply Gluten Free’s downloadable PDF, “Setting Up Your Gluten-Free Kitchen”.
  5. Don’t forget the products.
    Glutens and caseins can also be found in products: Play-Dough (my school just stopped using it), shampoo, soap, cleaning products.  It’s essential to remember that foods that are ingested are at least processed by digestive enzymes.  Products that you put on your skin or hair, however, are directly absorbed into your pores with no processing elements, making them even more toxic to your child.

Looking at the list above, I’ve made every single one of those mistakes, multiple times.  I reached out for help yesterday 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 glutens or caseins are still getting into your child’s diet.  This then, is 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 glutens and caseins.

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 minds.

Share with us: What kinds of challenges have you faced in choosing to become and remain gluten- and casein-free?


  1. says

    Very interesting post. I have actually heard of leaky gut but I didn’t know what it meant. I’m still a little confused, mostly because I think there is a lot to learn about it.

    We are lactose-intolerant in this house. I’m so grateful we don’t have allergies or celiac. BUT I do believe that additives in our diets wreak havoc… like monosodium glutamate, sodium benzoate, etc.(my daughter has an especially difficult time with these). I truly believe that much of what we hear about ADD or ADHD has more to do with our diet and environment than anything going on in the brain.

    Thanks for a well-written post!
    Diane – It’s All Good Until You Burn Dinner recently posted…Chocolate-covered Jellies are Valentine ClunkersMy Profile

    • admin says

      Hi Diane, I apologize for the late reply! Actually, a LOT about it is confusing. There are gluten issues NOT caused by leaky gut, as well as those that are. It’s really difficult, and I’m constantly amazed at all my friends who have this biochemistry down! (Those would be the only two subjects in school I did NOT like :)

      I agree about ADD & ADHD. Additives are horrible, IMO, but they are everywhere! GOOD LUCK to us as moms to get them out of our kids’ diets :)