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I'm really confused: a poop and intolerance question  

post #1 of 8
Thread Starter 
Here is some background on dd, age 3

Before she was 2 I figured out that she had problems with soy and casein and eliminated them from her diet. I figured this out pretty much based on her poop.

This summer she stopped growing and I immediately removed gluten. The doctors suspected Celiacs although she tested negative on the tests. During that gluten challenge her poop was liquid. Utter liquid. The tests did show that she was not absorbing nutrients and her poop was essentially acid.

We just took her to the pediatric GI dr. for the first time. He still suspects Celiac's based on what we told him and also said she was Failure to Thrive since she is so small. Born Oct 16th, 2005 she is 35.5 inches tall and 29 lbs. She is getting pretty skinny again. That makes her BMI 16. Although both parents are short, thinness does not run in the family.

We are doing another gluten challenge in prep for a colonoscopy, endoscopy, and biopsy. Last gluten challenge was gluten only - no milk. This time we are on milk as well.

The head scratchier - her poop is fine. Normal. She doesn't have bags under her eyes and is behaving normal. Is the milk contracting the gluten? Is she suddenly normal? Did I imagine all her other problems?

I am really worried about putting my daughter under general anesthesia and giving her all those tests if they aren't needed. I'm totally second guessing myself. But on milk and gluten she suddenly seems fine. No behavior or poop problems. She still is very tiny though.

I could use any suggestions or advice. Should I insist on waiting to see how she handles gluten and milk longer. Or should I start cleaning her bowels out on Sunday and go ahead with the tests.

post #2 of 8
That's really hard. How long have you been back on dairy and gluten? It's possible that it's just taking a while for the reaction to build up. Which would lead me to believe that it's a gluten intolerance rather than celiac (but I could be wrong).
post #3 of 8
Thread Starter 
She has been back on gluten and milk for 5 days now. No swollen belly like she had during her last gluten challenge. I'm still scratching my head. I'm really worried about the upcoming tests but I think we will go ahead with them. We will know what's going on, I hope. Diagnosing her has been a challenge to say the least.

The reason Celiac's was suspected is because gluten has previously stunted her growth. She didn't grow for 6 months and then shot up when gluten was removed from her diet.
post #4 of 8
Quote:
Originally Posted by beezer75 View Post
The reason Celiac's was suspected is because gluten has previously stunted her growth. She didn't grow for 6 months and then shot up when gluten was removed from her diet.
FWIW- a food intolerance can have that same effect of stunting growth. So even if the tests come back negative for celiac, I wouldn't rule out a gluten intolerance.
post #5 of 8
Have you all ruled out other possible reasons for stunted growth that would be easy to detect through blood work? (Hormone deficiency, Genetic abnormalities, etc. My dd has Turner Syndrome - growth failure during early childhood is a hallmark symptom and gluten intolerance is common with TS, FWIW) If you are second guessing the more invasive tests that would be an option.

I would also be suspicious of a gluten intolerance that is just taking some time to show itself. Gluten can do that.
post #6 of 8
Thread Starter 
Quote:
Originally Posted by LaurieG View Post
Have you all ruled out other possible reasons for stunted growth that would be easy to detect through blood work? (Hormone deficiency, Genetic abnormalities, etc. My dd has Turner Syndrome - growth failure during early childhood is a hallmark symptom and gluten intolerance is common with TS, FWIW) If you are second guessing the more invasive tests that would be an option.

I would also be suspicious of a gluten intolerance that is just taking some time to show itself. Gluten can do that.
We are really just beginning the diagnosis process. I have a holistic pediatrician now (no forced vaccinations!!!!), and we are seeing a pediatric GI specialist. I am going to talk to him on Monday about the absolute necessity of the colonoscopy and endoscopy. I am proceeding with the cleaning of the bowels but that never hurt anyone anyway.

I have limited knowledge and was just going by what I know. Since I'm not a doctor it isn't much. Plus, my old pediatrician send me on a wild goose chase sending me to the wrong specialists. Any knowledge thrown my way is much appreciated! I honestly didn't know there were other gluten intolerance and growth restriction reasons other than Celiacs.

Keep the knowledge coming! I'm soaking it up!
post #7 of 8
Here is a link to something I found on growth failure in children. I think it gives a good overview.

http://www.emedicinehealth.com/growt...article_em.htm

It seems to me that blood work and possibly an x-ray of your dd's wrist to look at bone age might be a good place to start. Both are far less invasive than a scope. If these don't reveal anything useful you can always do the scope next. Unless, of course, you want additional information that only a scope can provide (ie. fairly conclusive evidence of Celiac disease).

HTH's.
post #8 of 8
There is a test you can do through Enterolabs that is a stool test and a DNA cheek swab, which would be my first choice over GA and a scope. I would not rush to scope my child, esp if she's only been back on gluten for 5 days. I know they say that is the gold standard for dx'ing celiac, but there are a lot of GI docs who disagree about scoping little ones.

You have to do what feels right for you, but that's just my feeling.
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