So the elimination diet with Liam is going OK. We’ve eliminated all potential FPIES trigger foods mentioned in my previous post (rice, soy, milk, butter, cheese, chicken, turkey, green beans… and more) and then of course wheat-based products given he was previously on a gluten-free diet. When he was off all common FPIES triggers and wheat for a week he started to have normal bowel movements so we added wheat back in, but unfortunately didn’t get much farther given we haven’t seen normal bowel movements from him for more than a couple of days while on wheat.
What I find most perplexing is the many ingredients in cereal, bread, crackers, and other packaged wheat products, is that you can’t just buy a product that has whole wheat flour, oil, eggs, baking soda, etc. It has to have all these additives like nutrients (Thiamine hydrochloride, riboflavin), preservatives (Ascorbic acid, citric acid, sodium benzoate, calcium propionate), flavor enhancers (Monosodium glutamate (MSG), hydrolyzed soy protein), and 10 or 20 0ther ingredients that you are like … what is that exactly and should I be concerned.
So in wheat products, I’ve stayed away from any products that include soy in any form (soy lecithin, soy protein, soy oil…), any dairy, as well as barley and oats as I wanted to test these wheat based foods in isolation. Even being this strict I still have only seen improvement for short stints.
My general assessment though is that Liam is tolerating wheat fine, his temperament is usually pretty good after eating wheat, and they say children with reactions to wheat can be quite bad tempered after digesting it. He has also had some pretty solid bowel movements while on wheat and the frequency has gone way down, from around 5-6 a day to more like 1-2 a day on average, some days a little more if he has a food reaction. So I think it is other ingredients in some of the packaged wheat based products he is reacting too, which are hard to stay away from, even just for the sheer convenience factor.
Because we haven’t been able to get to a stable point in just adding wheat into his diet and because this has now been going on for about a month, I couldn’t wait any longer and decided to add a few additional things into his diet given his reactions tend to be fairly close to the time he digests the food… about an hour or two later. So I can generally get a sense for a new food and if it has an impact as long as I am sure he eats foods I am pretty certain he is OK with around the same time. He seemed to do just fine with chicken, so we’ve eliminated that as a suspect food. We also tried turkey, again fine, so another food back in. I also tried barley, but unfortunately I’m suspicious… but it’s hard to say for sure.
So the journey continues, although a little slower and more frustrating than I had hoped. Liam has a sensitive little gut that is for sure. I need to get back in to see Liam’s allergist, report where we are at and get his advice on additional things we should be doing / avoiding, etc. One day at a time.