FPIES Started at 5 and getting worse

My son is now 8 years old. We just saw a GI Specialist that thinks he *might* have FPIES or stomach cell-mediated food allergy. We have to do patch testing with an allergist to confirm. But I have been suspecting FPIES for a couple of months now. Nothing else explains his symptoms better than this. He started off reacting to wheat and diary, but this past year, rice, soy, beans, and peanuts have been added to that reaction list. The GI dr. recommended that I give him Culturelle because it is non-dairy. The problem is that it made things worse! He has been nauseated all weekend since giving him the Culturelle. I am so frustrated. At a loss. I am so worried that he's going to get worse and worse with a condition that he's supposed to *outgrow*. I am desperately looking for answers. Has anyone else been through this?

Original Post
I'm sorry you are going through this! I don't have a lot of experience, but a skin patch test will only confirm ige mediated allergies ( the anaphylactic kind of allergy).  Fpies can only be clinically diagnosed.  You might alsoconsider taking your son to a rheumatologist and having some blood work done to see if he has some autoimmune condition affecting his gut.  I had an adult autoimmune "event" triggered by my first pregnancy, and developed both a skin disorder and adult onset fpies, and I tested positive on several blood tests for autoimmune responses.  So a rheumatologist may help.  Best of luck for you and your son:-)

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