Monday, May 19, 2014

Gluten, Casein, and Why The Hell I Eat Weird S**t

Some people think I'm crazy...

A couple of days ago, a Facebook friend asked me for my thoughts on this article. My thoughts are varied and complex, and this is a huge topic that is basically impossible to compress into one blog post, but I suspect that she was asking this question in relation to the gluten-free casein-free diet that The Hubbles and The Kidlets follow, so basically: The study isn't wrong. Also: The study is wrong. More specifically, the study is the wrong study.

Let me explain. You should probably take a moment to get a warm drink; this could take a while, and I'll be linking to articles that you should read in order to really understand all of this.

Okay. First, there are lots of different things that people are talking about when they say "gluten intolerance". Sometimes they mean "Celiac Disease", which the Mayo Clinic explains very well here. It is a very serious disease that involves symptoms that vary from abdominal cramping to full-on "go to the hospital now, because everything is swelling, and staying alive is a good idea". Diagnosis is done via urine tests, blood tests, and a very uncomfortable, very invasive test in which doctors actually reach up in there and cut out a piece of your small intestine and look at it through a microscope. I have a few friends who have been diagnosed with Celiac disease, and it is literally life-or-death for them every time they eat food that they haven't prepared themselves.

It is also not what The Kidlets and The Hubbles have.

So let's move on to the second thing people sometimes mean when they say "gluten intolerance", which is "Non-Celiac gluten sensitivity", which is basically characterized by general bloating and discomfort and tiredness and Irritable Bowel Syndrome (IBS)-type things. This is what the study was looking at: is this a thing? And if it is a thing, is it gluten that is the problem, or is it something else in wheat and other grains, that coincidentally gets eliminated when one follows a gluten-free diet?

Studies like this are important, and I'm glad they're being done, because it's a good idea to get to the bottom of questions like this. And what this study found is that no, it isn't gluten; it's something else. (That something else is called a FODMAP, which is fancy-abbreviating for a short-chain carbohydrate that isn't readily absorbed by the body. You find them in things like corn syrup and artificial sweeteners and other things, as well as gluten-containing grains.) THAT SAID, any study in which a person is asked to self-report (i.e., report their own symptoms) is a study that, in my opinion, needs to be reconsidered, because DUH. You're asking for inconsistencies and bias there, guys. You are practically begging for them. And you are going to get them. In spades.

But IBS-type symptoms are not what The Hubbles and The Kidlets have, either. This study is not about them. Nor is it about most of the people who are both on the Autistic spectrum and need to follow a GF/CF diet. (Although it is about SOME of those people, because that's just how life works. There is always overlap.)

This brings me to the third thing that people sometimes mean when they talk about "gluten intolerance", which is probably best described as a lack of behavioral control when they eat gluten or casein. This can mean: a lack of ability to focus; a lack of ability to moderate their behavior when they feel an overwhelming emotional response; a more extreme emotional response to their surroundings than most people; an increase in self-stimulatory behavior; general difficulty picking up on social cues (as opposed to overtly stated directions); and a few other things that basically fall under "autistic behavior". (This is obviously not a technical term, but, you know, this is already kind of a long post.)

These symptoms are related to gliadorphin and casomorphin, two peptides in gluten and casein that don't get into the bloodstream of most people but do get into the bloodstream of some people, and that, once in the bloodstream, get carried to the brain and activate the same receptors in the brain as opiates. This has been shown to happen in rats, and THIS is the issue The Hubbles and Kidlet Number One have. This is not an allergy. This has nothing to do with antibodies or immune response. This is a chemical reaction akin to what happens when you inject heroin or smoke opium. You can read a little bit about that in this study here and also in this study here.

We figured this out because I noticed a bunch of Asperger-type behaviours in Kidlet Number One starting from when he was a toddler, and I had worked with Autistic kids for years before I had my own kid so I knew that this is sometimes a part of the equation, and so when Kidlet Number One was five and Kidlet Number Two (who never did any of those Asperger-type things) was one-and-a-half, we all peed in cups and sent them off to a lab that found way-too-high levels of gliadorphin and casomorphin in the urine that came out of The Hubbles and Kidlet Number One, and borderline levels in the urine that came out of Kidlet Number Two, and almost nil levels in the urine that came out of me.

So. No gluten and casein for us. Because Science.

We could do a bunch of tests and figure out why this is happening to them. We could try to find out if the problem is a missing enzyme, or a GI tract that lets more things through than it should, or both. But really, why bother? Those tests will be expensive, and they won't change anything about the way they eat.

It is important to note that not all people with Autistic Spectrum Disorder have this issue. It is also important to note that eliminating gluten and casein are NOT "cures" for autism or Asperger Disorder, and anyone who tells you otherwise is either lying, or misinformed, or desperate, or a combination of those things. Kidlet Number One is almost 11, and he still can't lose a board game without being on the verge of tears; he still turns red and starts to hyperventilate a little when plans change, or when his expectations for the day aren't met. There is a huge difference between his response to a sudden rainstorm that rains out a game of baseball, and his younger brother's response. And that is simply who he is. It is what the Universe handed him when he was born.

BUT, this diet has helped him. Kidlet Number One's teachers noticed a huge difference in his behavior when we took out gluten: his sensitivity to noise decreased, the number of total meltdowns decreased, his need to always do the same work in the same order was moderated, and the severity of the meltdowns lessened. His ability to cope with sudden changes to a planned schedule is much better when he is off gluten and casein than when he is on them. It is easier for all of us to live with him, and it is easier for him to live with all of us. And in terms of diagnosis, the psychiatrist put him on the "Asperger" side of the line when he was eating gluten and casein, and on the "normal but quirky" side when he wasn't. But, you know: it's a pretty sketchy line. He went from severe problems coping to less severe problems coping, and problems are problems, no matter what you call them.

SO: what do I think of the study? I think it's not relevant to me, but it might be relevant to you. And I think that we need some words that are more accurate than "gluten intolerance" to talk about all of these issues.

Thanks for stopping by.


  1. You've done so much research on this. Thank you for sharing what you've learned, and so glad your family has seen improvement.

    1. Thanks for the good wishes, Kristin! I hope this post helps someone. :-)

  2. Thanks, Ishta. Very clear explanation of the study.

  3. I enjoyed reading this, Ishta. I did some research on this myself and find one leads to the other and where to ever stop, but great research and explanation here. Ever considered doing a NF kids book on it?