2 PANS kids fighting lyme and coinfections, our journey to healing

Gluten/Dairy Free

We started our son GF/CF (casein free) way back in 2005. It was evident something was setting off his terrible stomach issues and starting there seemed the best way at the time. We had parasite testing done and nothing showed up at that time and we had been given a hand-out on dealing with toddler diarrhea. However, we needed to do something about it faster than just letting him grow out of it. His skin was constantly burned from the acid in his stool and it had an acrid and putrid smell to it, so bad that sometimes my husband just could not change him. In addition to the diarrhea our son also suffered from eczema and lots of congestion, that we now realize was all allergy related.

We have continued on and off doing the GF/CF as he really seems to be improved without that in his diet. His stomach is affected if he eats too much of one or the both. Actually if he eats a cumulative amount he will physically vomit, so we try to limit it as much as possible.

We eventually managed to do blood tests and the skin tests to see what his allergies actually were (we waited patiently until someone could draw blood from his arms as he had incredibly small veins and a manner not conducive to allowing anyone close to him with a needle!) Eventually at 5 years old we got enough blood and managed to have him sit long enough to get results from both tests.

He is reactive in order of severity – at the top of the list is Apples, then corn, wheat, dairy, tomato and peanuts.

His list of environmental allergies include (but are not limited to) Oak trees, grasses, ragweed, and mold. These seem to be the major aggressors, but there also are multiple lower incidental allergies related to dust etc. but they don’t seem to cause as many symptoms as those listed above.

Apples: Its interesting to note that once we removed apples his writing improved almost 75%, and his behavior was more manageable. He did eat a lot of apples though as he is not only GF/CF he is also on the Feingold plan which almost forces us to eat as healthy as possible; however, many of those natural foods contain apple as a sweetener.

We stick to the GF/CF plan as much as possible and I am aware there is no such plan as gluten light or dairy light 😀 However, I allow him to eat pizza once in a while or birthday cake, not for any reason than the behavior seems to occur more from the pain of his stomach than the effect of the peptides on his brain. We haven’t had a celiac test just the blood sampling test so I don’t think he is allergic to gluten or dairy, I think it may be more of an intolerance. Only time will tell on that one, if  we chose to do a celiac test in the future. For now it’s working the way it’s working so for us this is where we stay.

If anyone is thinking of going gluten or dairy free, just know that we are cheating, to really gauge how well or if this type of diet works for you or your child you need to avoid ALL sources of gluten for at least 6 weeks and avoid ALL sources of dairy for up to 6 months. It really can take that long to see significant changes. Often once your child is off for a number of months you can add back in some gluten without seeing any significant issues, it maybe that you read up on ‘leaky gut syndrome‘ which is what I think happened in our case, and if we go overboard it tends to start reoccurring. It is hard to always say no, but in our son’s case he often chooses to not eat something, especially if he has already had some wheat or dairy in the past few days. He really feels ill when he overeats either one so he has an internal barometer that will set him up for success.  The Feingold is a little harder, birthday, halloween and valentines all involve candy, which is our biggest nemesis. I use a Natural Candy Online Store and stock up or I shop at the local health food store and keep candy on hand. My kids are exceptionally good about handing over and switching out their candy for which I am always truly grateful. They now also have favorites in the natural candy sections that they are happy to switch stuff for.  Good luck, this can be daunting at first, but often a great change is seen which makes it worthwhile.

© Loving the Spectrum