Daughter Has Pain All The Time

[T.H.]

So, we just had my daughter's endoscopy today, and I'll be speaking with the Ped GI in three days. I'm hoping to get some ideas for things to speak to him about, depending on what the test results are. It's so hard to get in touch with him that I figure I'd better have some things to discuss by the time I actually do!

History:

My daughter is 13 and was diagnosed as celiac 2 years ago but had no stomach pain at that time.

With an elimination diet and an allergist, we found both foods and environmental allergies that were problems and eliminated those. Then at the 6 month mark or so, she started reacting to lower levels of gluten, so we lowered the gluten intake.

A little while back she started having stomach pain. It gets MUCH worse if she gets gluten cc or any of her 'bad' foods, along with her emotional symptoms roaring back when the cc or allergies are ingested.

However,

- her stomach hurts whenever anything goes into it. If she eats anything, drinks anything, her stomach hurts afterward. Amount doesn't always affect it, but more water, at least, seems to cause more pain. Sometimes that's true with food, sometimes not.

- The pain is not localized - it can be anywhere in her abdomen, and seems to occur in different places. Doesn't lead to nausea, vomiting or anything, just feels bad.

- The pain decreases when she's sitting or lying down and hurts more when she's standing or walking.

- The pain does not correlate with any emotional symptoms if it's just from her regular eating/drinking.

For what we know about what it probably isn't:

-She tests negative for H. pylori.

-She tests as having good levels of iron, B vitamins, and others, dang, can't remember which ones. A point or two low on Vitamin D, but she's being supplemented for that as well as going outside more often.

-There is no evidence of GERD, gastritis, or ulcers during the endoscopy.

-There doesn't seem to be any evidence of inflammation, either (I believe, but will have to double check with GI on that when I talk to him next).

-Villi looks healed and healthy, at least to the naked eye.

- We parents tested negative for the gene for Crohn's disease.

-We've tried the diet for fructose malabsorption more than once, didn't seem to make a difference. We've tried other elimination diets for various single item foods or food families, don't seem to change things.

- stomach pain doesn't seem to correlate with anything other than food and drink consumption. Stress levels, anxiety, sleepiness, travel, nothing seems to correlate to increases and decreases in severity, except consumption. :-(

- stools are a bit too soft and smelly, but she never has the big D.

So right now, we're waiting on the biopsy results from her throat, her stomach, and her upper intestines.

I'm sitting here not wanting anything serious to be wrong, but at the same time, really, really hoping that there is something that we can take care of so she can stop being in pain again!

Does anyone have any ideas of things to look for if the biopsies come back inconclusive? Anything that ended up being an issue for ya'll or your little ones?

I'm trying to research parasites and salicylate sensitivity right now. We have her scheduled to see a ped. Endo. because her thyroid is a little high and we have Hashimoto's in the family. But after that, I'm just at sea. Any suggestions or ideas would be most welcome!