child with symptoms

mrjmom · Joined: 11 Jul 2008 Posts: 5

Hello, I am new here. My son is 6 and has been having some symptoms of celiac for a while now. We have done stool sampling to check for possible bacteria or parasites. All of which have come back negative. My son has a known PRF1 gene mutation which causes him to be a carrier of a disease called HLH. (Hemophagocytic Lymphohistiocytosis). Basically this is a disease where your immune system doesn't know how to turn itself off and begins to breakdown good cells and antibodies. He does not have the protien found on his natural killer cells that fight viruses and cancer. He does not have HLH he is just a symptomatic carrier. Now our Ped. is going to do bloodwork next week to see if he has celiac as well. Here are his symptoms:

consistantly loose stool
cramping legs
swollen lymph nodes
mouth ulcers
dental problems (discoloration)

Please let me know if you think we are headed in the right direction. Also he had Reflux very bad as a baby. He had to be on a soy diet until 2 yrs. old. Thank you for this forum and sorry for the lenght!
mrjmom

aklap · Joined: 02 Oct 2004 Posts: 8796 Location: WI, USA

Hi MRJMom,

Welcome to the board. Sorry to hear the poor little guy has to deal with this.

CD is certainly something to check in to. You might check out Our Thread on Celiac Blood Tests & More Diagnostic Info.

It sounds like you've explored some food issues already. Dairy, Soy, Corn are some of the biggies. Even if the CD testing comes back negative, you still might consider removing gluten [or other foods] to see how things go.

Good luck in your Knowledge Quest. Please let us know how things go.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa