Emma has been on “the diet” for exactly seven weeks and two days now. Because Emma did not test intolerant for gluten, last Wednesday we introduced gluten back into her diet, but stayed the course with all the other foods she tested an intolerance for. Here is what we have seen: nothing. There has been no significant change since we began this, she has not expanded her choices of foods. I’m starting to have an increasingly difficult time explaining to myself or to Richard why we are continuing. Everything I’ve read, including her doctor tells me we should stick with it. Give it at least another month. One mother I spoke with told me I should give it at least six months! So here’s my question – Why? What could possibly happen in the next four weeks? The idea that suddenly we are going to see some significant cognitive leap seems highly unlikely. If one just looks at this practically, how is it possible that a child would show no signs of any improvement, but if we just kept on this diet, suddenly at some point in the foreseeable future the diet would kick in? Kind of like an engine roaring to life despite having been jump started countless times.
The argument given as a reason to stay on the diet, goes something like this – these children have what’s called a porous intestinal wall also known as – leaky gut. The leaky gut means foods, particularly foods with gluten and casein, are not properly metabolized or digested. Some believe these foods become peptides or even opiates, which then leak into the bloodstream causing neurological problems. So the thinking goes – the leaky gut needs to heal and can only heal if the child does not continue to consume foods they cannot digest. The only children I have personally heard about who have been helped by adhering to the GFCF diet, showed significant change very quickly, usually within the first few weeks, but more often within the first few days. I have yet to hear from anyone who saw nothing, but stuck with it, then months later saw improvement. If anyone reading this knows of anyone who’s child showed nothing, but much later improved as a result of the GFCF diet, please write me.
If this diet were easy to stay on, didn’t require a massive amount of time and energy, I would stay with it. But that isn’t the case. It has taken up hours and hours of time. I have made batches and batches of gluten free baked goods only to have Emma refuse all of them. We have thrown enough gluten-free, casein-free products away to feed a small village. Emma’s diet, instead of expanding has become even more restrictive as a result. She now seems to exist solely on applesauce, the occasional slice of ham and peeled Fuji apples. She will eat one particular sheep’s milk cheese that I can only buy at the Farmer’s Market in Union Square on Saturday mornings, but shuns any other. She will eat one specific brand of goat’s milk yogurt from Whole Foods, but will eat no other. Because she cannot have many fruits and vegetables, only green, orange or yellow skinned are allowed on this diet, she now will only eat peeled Fuji apples, very occasionally I’ve been able to get her to eat a piece of honeydew. She loved green grapes, but one week Whole Foods had a batch that tasted differently and now she refuses to eat them, even though they are like the ones she used to like.
When we put Emma on this diet the first time, when she was only two-years old, we saw the same thing happen. Previously she was still eating scrambled eggs, hot dogs, pizza, grilled cheese sandwiches, pasta with pesto sauce, raisins, a wide variety of nuts, bananas, the list went on. And while, at the time, I saw her diet as limited, it became much more so on the diet. When we reintroduced foods after three plus months on it, she didn’t go back to many of those favored foods. As the years continued, Emma has limited her foods to some half dozen. She seems impervious to sensations of hunger or fullness. If I find ten containers of the goat’s milk yogurt that she likes, she will eat all ten if allowed. The next day, upon seeing there is no more goat’s milk yogurt left (or whatever it is that she’s eaten all of) she appears unconcerned. She simply doesn’t eat. There is a complete lack of drama one way or the other. If it’s there she’ll eat it and if it’s not, she just doesn’t eat.
On a side note, a friend of mine asked, “What’s next?” That will be the topic of tomorrow’s post.
I am taking Emma to the naturopath/physician this Friday and will report back.
For more on Emma’s journey through a childhood of autism, go to: www.Emma’s Hope Book.com