If she hasn't had a colonoscopy, I would definitely have that done. That is how we found out for sure that my son has gastritis and duodenitis and that he is lactose intolerant. They checked for celiac during the colonoscopy but it came back negative. The doctor said that since my son was basically on a GFCF diet at the time, it is possible that he has celiac and that it didn't show up because there was no gluten in his system for his body to be reacting to.
So yes, it is possible to have celiac and test negative. If she was eating gluten containing foods at the time of the test and had been for awhile, then it should have shown up though, I would think. Since she is not eating wheat, you would want to make sure she was consuming another grain that contains gluten or that you put her back on the wheat for like a month before the colonoscopy. (Talk to the doctor to find out for sure how long she would need to be on it.)
With my son, I figured he was probably lactose intolerant since the rest of the family seems to be. I wasn't sure about celiac but I know that the lactose and the gluten are not what is causing his current problems because he hasn't had them in quite some time.
If you have had your daughter off of wheat AND other gluten containing foods for awhile and she is still having problems, that is probably not what is going on, even though celiac may be ANOTHER problem that she has. If she is still on some of the other grains, etc that contain gluten, then it could be celiac.
I have researched Celiac a lot over the past several years but my main question is can this be Celiac without testing positive from the biopsy? She has a lot of the symptoms of Celiac but we can't get a positive from the biopsy's. I have heard of people that as adults were diagnosed with Celiac but they didn't know they had it when they were young. Does this make sence what I am asking? I have been looking up results for "burning in the stomach" searches and mostly come up with some kind of gastritus or ulcers. She has not had a Colonoscopy do you think that would tell us anything? One more thing, she had an elevated number of Eosinophils and the GI called it Eosinophilic Gastritus. That is why we went back to get the food allergy skin test done. That is also why we have her on the diet of no wheat, soy, etc. I don't understand why she is still hurting so bad after all this that we have been on top of to make sure we do the right thing with her diet and medicine.
Got any other ideas?
Celiac was one of the things I thought of with these symptoms but since they haven't found anything with that...The other thing that came to mind is lactose intolerance. They should have checked for that already though. If not, that would be something to consider.
This doesn't seem likely but since it was a passing thought on a possible cause I think I'll share it and let you decide...Does she seem to have any sleep issues? Does she snore? Swallowing air can make you gassy. If she has sleep apnea and is waking up (though very briefly) several times a night kind of gasping for air, it is possible that she is swallowing a lot of air. My husband has sleep apnea and has always been very gassy. Since getting diagnosed, he uses a bipap machine to sleep. When he uses the mask and it fits well, he seems less gassy than before he started using the machine. If he has a hard time getting it to fit properly, he wakes up in pain from all the air he swallowed and is very gassy. Like I said, this doesn't seem real likely but you may want to have a sleep test done on her to check for this.
She was tested for CF when she was a baby and after reading up on Pancreatitis, I am pretty sure that this is not what it is. Another thing I forgot to mention in my original post, she is extremely gassy. I have never seen someone so gassy. When the GI doc listens to her stomach with the stethescope (sp) she always says "oh yes, her stomach is very gassy". I am open for anymore suggestions.
Thank you.
Has she been tested for cystic fibrosis or chronic pancreatitis? My four year old son has been having digestive issues. His EGD/colonoscopy showed that he has gastritis and duodenitis. They also did a pancreatic stimulus test to check for pancreatitis and other pancreas problems as well as checking for CF. Since your daughter has asthma, that would be more of an idication that this could be CF. I would have her tested for that if they haven't already done so.