Ok, I realize my original didn't go into enough detail, I'm going to lay out the history.
Under 12months old DD would throw up violently for an hour and a half after ingesting any grains. When she was about 14-15 months, I introduced oatmeal again, and eventually a diet with no restrictions. But, suddenly she had horrible eczema. We went gluten free as a last ditch effort in November 2012 in order to try and tame her eczema. We have had no eczema break out since. We did not get her tested at all for the gluten allergy- the "diagnosis" was purely from going without gluten and it fixed the eczema problem. I didn't even consult the doctor before hand- I let her know what we did and the results at DD's 2 year appointment at the end of December 2012, and the pediatrician (who we LOVE) just said to keep doing what we were doing.
Thursday of this week a friend of a friend mentioned that her "diaper rash" might be dermatitis hepitaformis (sp??) and that it was a specific gluten reaction. I looked up pictures- sure enough, what we had been passing off as diaper rash was DH for sure. Then I stumbled on some other threads and descriptions.....2 hours later, I recognized my daughter in SO many of the symptoms: way too small for her age (has not been on the charts since 9 months, was almost diagnosed failure to thrive at 12 months, is 2 1/2 and still in 24 months clothes and less), the "distended belly," the dark circles under her eyes, eczema, DH, goes from constipation to diarrhea in less than 24hrs w/no apparent diet change, has always slept a ton.....
So I called her pediatrician Friday morning with my concerns and she wanted to do a "full Celiac blood panel." So I scheduled the appointment for 2 weeks from Friday, and we (my husband and I) decided it was for the best and gave her a sandwich (2 slices of whole wheat bread). It was a peanut butter sandwich, but no, she isn't allergic to peanuts- she eats them all the time with NO issues whatsoever. And by all the time, I mean almost every day.
Within 15 minutes of eating the bread: she had a fever of 102*, a cough suddenly broke out, her DH was getting progressively worse (painful and itchy, as well as raised and red), she started having eczema spots again, her belly blew up like a balloon, she started having the shakes (like chills), and she started projectile vomiting. We went to the ER.
We went through an older ER doctor who obviously knew nothing about Celiac's and actually suggested that we should continue feeding her gluten and do the test in 2 weeks.....Um, what??!! She would be dead by then. We went through the ER resident and finally got the on call pediatrician from our pediatricians office to order them to take blood to run the tests. I know they will probably come back inconclusive at best- but that is the only time we were going to be doing that.
My only hope for the tests is that we have been giving her a small amount of cereal that had malt in it- I didn't know that "malt" is from barley..... (Yes, I am at the low end of the learning curb right now). It corresponds with the latest breakout of DH......
On Saturday, she still had a fever, her rash was still getting worse albeit slowly, still has a cough, and woke up with a 3rd type of rash that appeared on her legs. Her mood swings were out.of.control. and she is still very shaky- weak-like.
Today, her rash is no longer getting worse (we have been slathering her in hydrocortisone, benadryl seems to be doing nothing), she still has a low grade fever despite being on a tylenol/ibuprofen regimen since Friday, still has the cough, and is still shaky. Oh, did I mention the mood swings are reminiscent of my teenage years?? Seriously, how can a toddler be THAT moody?? She is a very pleasant, happy girl off of gluten. I don't know this child at all......
Please help. I don't know where to go from here, and I don't know what to expect. I don't know what to advocate for....I love our pediatrician, but I also want to be well informed enough to know where to go from here just in case she isn't as proactive as I would like.