Our appointment wasn't for a few more weeks but yesterday the clinic called and said they had a cancellation for this morning so we took it.
The appointment wasn't long but it was nice to finally be able to talk with some who actually had some experience with this sort of thing. The doctor is Dr. Harnsberger. We discussed the Enterolab results a bit but she said she couldn't do anything with them because it was considered an alternative form of medicine and she was not trained or qualified to interpret such results or use that approach. She said the tests are sketchy because some of the things they test for are naturally found in food and so would come out in a stool sample. At least that was the case with the transglutaminase tests. She did, at least, concede that the information about soy was helpful, and that regardless of any sort of testing we have seen and can conclude that Barrett is sensitive to milk, soy, and gluten.
We discussed possible causes of his insensitivities. When Barrett was a baby they suspected giardia, but the stool sample came up negative. Dr. Harnsburger said you couldn't entirely rule that out because it only shows up in 50% of stool samples when people have giardia because it lives in the small intestines. She said the bacteria could cause the food sensitivies because it breaks down the proteins in larger chunks than normal that cause the immune system to react to it. We could have seen improvement on an elimination diet because the bacteria was not being fed the foods it was previously ingesting.
Another possibility could be a genetic food insensitivy or allergy since it does run in the family. My uncle couldn't eat anything but rice until he was about three years old. His daughter had a similar problem. My family also has a history of autoimmune disease and my husband's sister has Celiac.
Another possibility is that there is some kind of damage or infection in the digestive tract that caused something like leaky gut. The only way to rule that out would be by a biopsy. Dr. Harnsburger recommended waiting on that and trying other methods first. Especially since he has done so well on the elimination diet.
Our main concern was getting Barrett the nutrition he needs on a restricted diet. Barrett was taking Usanimals, but he won't eat them anymore. Not even if I smash them and put them in his food. She recommended a simple gummy vitamin, if we wanted to give him one. Even more importantly though, she recommended some protein juices designed specifically for children like Barrett. They come in juice boxes and are called either Boost Breeze or Eo28. She gave us a sample of Eo28 and Barrett seemed to like it. They are supposed to be hypoallergenic. She also recommended a medication called Cyproheptidine, which is an antihistimine for the digestive tract to help lesson reactions. It also stimulates appetite. She wanted us to do that for three weeks and then call and update on his status.
She also said that 90% of kids outgrow their food allergies by the time they are in kindergarten. Even with kids as severe as Barrett. I guess I will place some hope in that.