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
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I tried the diet twice as well. The first, nothing, for three months or so nothing so I thought, why the heck am I bothering? The next time, I added the digestive enzymes to every meal and I really made sure that soy was not hidden any where in her diet. The only thing I noticed was some behavioral stuff and some tic reduction, but that being said I question staying on it as well. I keep thinking if I can heal her gut, that things will get better eventually. But, she still has really off days, days where she is bouncing all over the place, literally, and quite often acts like that no matter where we go. She still has tics….not the convulsive kind, but still has them just the same. I don’t know why I keep trying, except that maybe I am holding onto hope in strange forms because I can control THAT….meaning I cannot control the autism, I have no say about it, but I can control her diet. Wow, now I sound pretty psycho when I write that out. I wish I had some more concrete information for you. Have you tried the enzymes and probiotic with Trufiber? The single thing that has helped her constipation the most is Trufiber with probiotics as well as a Magnesium supplement in liquid form. That has helped her sleeping a lot. I have tried the B 12 shots, but nothing. And I hated giving them to her. Plus, they were expensive. It is just so hard, because this is not like diabetes or anything clear cut where we give an injection of insulin. There is not one thing that works across the board, so as a parent we are left trying to find something, anything, that makes a difference. It is a personal thing, as individualized as our children. Please know when I tell you what has worked with u,s that I am not lecturing or trying to add to your frustration. I know I can feel frustrated when I read what works for others only to not have it work for us. We, meaning my Emma, seem to be the case where nothing has really worked that well. And I have tried many a things. Sometimes I wonder if I am making things harder for me and Emma by doing all these things instead of just focusing on being a family and enjoying her, but if I could have done something and did not, I would never forgive myself. So I struggle with this all the time.
With my 2 children the change on a casien free and then casien and gluten free diet happened very quickly..When they eat these foods their reaction to them is obvious. The negative reponse to these foods is the only reason we continue. It is time consuming and not cheap. It must be so hard for you because it is not even easy for you to access the foods having to go to markets or send away for eggs. Good luck with whatever you decide to do. I am sorry this doesn’t appear to be making a difference for Emma. As mothers we do so much for our children but we still feel guilty it isn’t enough.
Thank you both for your comments. Yes, frustrating and yes, incredibly difficult to know what’s best for Emma. And yes we all just keep trying. I do think once we finally go off this diet, I will be able to say once and for all – it didn’t help her. Hopefully I won’t then second guess it and wonder what would have happened if I’d only insisted she stayed on it for six months, a year… I have a friend who had her daughter on the diet for two years, saw nothing and finally stopped. All our children are so different, each one responds to different things – I am trying to remember that.
Hi,
I am a 55 year old high functioning autistic woman. I am married, have 3 neurotypical young adult children, and enjoy the independence of owning my own home.
I stumbled onto your blog about Emma from reading a blog entry you submitted to the Huffington Post.
I can hear your frustration in trying various treatments and following that illusive mirage of hope. I too have experienced that same frustration in trying to find treatments for myself.
I thought I would mention something that I wondered if you had run across yet in your search to understand your daughter’s issues. I don’t know if this will be true for Emma, but I know it is true for me, and for many on the autistic spectrum.
You mentioned that Emma will eat something she likes till it is all gone with no regard to how full or hungry she is feeling. It might be because she likes the way the food feels in her mouth. For me (and many on the autistic spectrum) it is more about the texture of the food, than the taste of the food. And slight variations in texture (that a neurotypical person might not even notice) are very disturbing to me. So if I like the texture of the yogurt I will eat it non stop because I like the creamy velvety softness in my mouth. But if you add a slight variation, say chopped fruit, then I might not like that. Even though I like the fruit alone, and of course I like the yogurt alone, the combination of the two changes the way it feels in my mouth.
For me, food is all about the texture. If you change the texture, to me it is an entirely new food.
Hope this can help.
Hi Sharon,
It’s good to hear from you. Yes, I believe Emma prefers certain textures, but it also seems to be about sameness, not wanting to try something new, which all kids feel to some degree, but with Em it’s just more so. Sometimes she’ll not want to try something, but I will encourage her to and then after she tastes it, she finds she really loves it. Those are the rarer times, but they do occur, which is nice. Thanks for reaching out.
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