This is my very first time posting. My husband and I have been keeping our son on a gluten free diet for about 6 months. A year ago he had an mri with sedation, so they did a celiac panel at that time. It came back negative, but his constipation was crippling his potty training and making him terrified to have a BM. I could just tell that something wasn't right about the way his body was working. We had tried a gluten free diet for a short time before to help with autism, but then returned to a normal diet. After the constipation came back with a vengance, we got him back on the diet and have seen major improvements.
Our Family Practitioner refered us to a pediatric GI Specialist, and discussed the possibility of him undergoing an intestinal biopsy. The GI specialist ordered a huge list of blood tests and did not find any wheat allergies, nor casien, but he did say the test picked up a possible soybean and peanut allergy, which is strange because he ate peanut butter every day. He advised us to continue with the gluten free diet, and that he obviously has a sensitivity to gluten. At this time it was a month before our wedding, and we asked him if he could possibly cheat for just one day, to have a piece of wedding cake with us. He said that it should be fine, that some symptoms might come back but it wouldnt be harmful to his body.
After pricking both of his arms to get two huge vials of blood we treated him to a chicken nugget happy meal. Later that night he got an insanely itchy rash that spread from the backs of his knees throoughout his whole body. He was miserable. We gave him some benedryl and it seemed to work immediately.
Cut to our rehearsal dinner last friday...after staying late at the venue in unsesonably cold weather, we arrived at the restaraunt (and amazing bakery) starving. We let our little guy have some saltines, mozerella sticks, french fries (probably fried in the same oil as gluten products) grilled chicken and he ate the frosting off of a cupcake. That night I got him to take a little benedryl, he slept well but woke up at 4:30 in the morning. He played and ate some bananas and juice. my brother took him to my in laws so I could get ready for our wedding, and about an hour later, my mom in law called saying he had thrown up all over her and had started to have bad diarrhea. He continued to throw up and have diarrhea all through the wedding. It was too much for such a short period of time. Then he started to get listless and lethargic. He wouldn't open his eyes, and was pale, with no color in his lips or cheeks. We have several nurses in the family so we decided to take him to the emergency room. I slipped out of my dress and we drove an hour away to the hospital closest to our home. He slept the entire way, but had barely woken up when we got there. They ordered an IV, but he was able to start drinking normally and drank about 20 oz of juice. His blood tests checked out, and he was able to take some zofran. He threw up one more time that day, had terrible gas and had diarrhea for a little longer.
The er doctor told us that he reacted to the gluten, since he has had reactions before. It scared us so badly we are terrified of giving him an opportunity to cheat ever again. He had gotten sick from accidental gluten before, but never to this degree. My questions are....
-Isn't this a serious reaction to gluten for just a sensitivity?
-do we need to do further testing for celiac disease?
-There is no way Im giving him gluten to prep him for the intestinal biopsy...What else can we try?
-Should we see another GI Specialist?
-Please share any advice!!!