Can A Biopsy Give False Negative?

[Aphreal]

My daughter suffered from severe upper stomach pain for over a year. It came out of the blue and halted her life over night. no more sports, she slept 15 hrs a day, she was in pain 24/7. We tried drugs and went through a lot of testing. That was 2 years ago and she still has some issue but it's a lot better.

In her *TONS* of testing, it was learned she has reflux but I KNOW there is something else. We had an upper and lower GI and they biopsied her bowel and said she is NOT gluten sensitive. Sometimes she just has pain, sometimes she eats a little then feels uncomfortably full but still hungry and has a hard time breathing. (reflux?)

I wonder if she doesn't suffer from GI like I do although our symptoms are different.

Thoughts? Should I have her retested? We DID go to a specialist....

Thanks

Tiff

[seezee]

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[Skylark]

Did she have a celiac blood panel too?

If everything comes up negative you can still try the diet. It can be difficult to get the celiac tests to come up positive and there are plenty of people who get sick with non-celiac gluten sensitivity.

[debmom]

My daughter has a wheat allergy, not gluten sensitivity, according to her doctors, but the result is the same and sounds very much like your daughter's experience. Her colonsocopy was inconclusive, but her pain and multiple symptoms were not. Once she started a gluten (or wheat) free diet, her pain and other many symptoms slowly subsided and only have returned on the rare occasion when she has had wheat by mistake.

The only way we could confirm the issue was with an allergy test that involved injecting a tiny bit of wheat into her system. within minutes she was experiencing the terrible stomach pain you describe with your daughter and she broke out with excema. Very few doctors do the injection tests; most do a skin prick test which often shows nothing unless you have a skin reaction to the allergen. Dr. Allen Lieberman in North Charleston, SC is one of the premier doctors who tests this way. People come from all over the country to his clinic.

[StephanieL]

We had a + blood test but inconclusive biopsy. We are now in our second month of the gluten-free diet and seem to be having some positive results. We won't get any confirmation for a while yet through blood work.

Good luck!

[macocha]

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[Aphreal]

Thanks guys. She is also OCD and we have a very hard time with her anxiety induced symptoms. I brought up perhaps we should visit the dr and see if anything has changed. She freaked out. It was not a postivie memory for her

[txplowgirl]

Gluten, soy and dairy, all three cause me to have high anxiety and depression as well as a lot of stomach pain. I would take her gluten free to see if that helps.

I have a feeling it would help her tremendously.

[T.H.]

My daughter has near OCD like behavior and huge bouts of anxiety, but off of gluten AND a few other foods we found through a food journal, there has been a HUGE improvement. We haven't done allergy testing, but we can definitely track her behavior to her food. Might be worth keeping a food journal for your little one, too.

For my daughter, gluten, corn and dairy are the biggest culprits. There seems to be something else that hits ad odd moments, too, but we're still tracking it down.

Still...it's stunning what a difference it has made for us. Seeing her having essentially a panic attack over small, small things, or a couple hours of crying and angst over another small issue were the norm. Inability to cope with any changes that were unexpected, as well.

And while I think she's always going to like things a certain way, and have an anxious response to stress more often than others might, the difference in her ability to cope with life and her own mind is the biggest difference we've noticed.

Thanks guys. She is also OCD and we have a very hard time with her anxiety induced symptoms. I brought up perhaps we should visit the dr and see if anything has changed. She freaked out. It was not a postivie memory for her