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micrich Message
7 Jan 2014, 12:47 AM

My daughter has been diagnosed with PIL. It took 13 yrs for us to track down the exact cause of what she has as it has in what I read in previous posts. She had to take the pill with a camera on it to find it. I have looked in many places for others that may have this and really have come up short. I know the one thing that we have done is to use cocnut oil on her food. Like when I stirfry some chicken i will use the oil in that. We also use it as a substitute in baking...tastes good. I also have found a product called Melt. It is coconut oil based and is like butter. They have many different kinds like a veggie spread, a chocolate spread similar to nutella...I have only found the butter type. I found it at whole foods. I believe you can order from their website for the other types. My daughter continues to have pain in her abdomen and swelling especially in her legs. She has had alot of boils and infections do not like her. She had braces for 4 yrs and her gums stayed swelled because of the irritation. There is alot more I will add eventually. We go to the G.I. dr tomorrow and hope to find out more. Its amazing that there is still so little known about this disease. Hope to find more people that struggle with this and hopefully be able to help them too. The more we are finding out about wheat and processed foods the better. I believe our food system has alot to do with these disorders. we are also doing a wheat free dairy free diet along with the low fat MCT diet. As soon as we get back from he doc tomorrow I will post the answers I get from her on here. Hope to help!!!! TTYL!! :)