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Nursing Infant Won't Sleep.

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Posted 17 April 2010 - 11:07 AM

-Frequent Stools (6-8 a day)
-Loose, sometimes watery stools. Never hard or normal.
-Stools smelled very bad, much different than daughter.
-Really stinky breath, like it smelled like his stools.
-Very Clingy
-Dry Skin (diagnosed as "eczema by pediatrician, doubts now)
-Gurbly Tummy You could literally hear his tummy constantly gurble and you could feel it rumble.
-He would wake up in the middle of the night crying, pass gas then settle back to sleep. This happened all night.
-Crying for no apparent reason, often.
-When he was an infant he would arch his back a LOT while screaming like he was in pain.
-Constantly wanting a snack like a cracker.
-He would pass gas a LOT more than my daughter ever did.
-Always grumpy and irritable.
-Extremely tired all the time.

The pediatrician told us for months that it was dairy allergy, so we put him on Soy. The GI Doc told us soy is not the best choice at all so then we were at a loss. Now my son will only drink soy, but he can eat dairy no problem. 6 months after really expressing concerns he finally ordered blood tests. I told him about celiac in the family and the blood/stool test came back negative. It took 6 months to get the pediatrician to send us to the a GI doc, that doctor was shocked he hadn't ordered any allergy tests. The allergist was too. The allergist didn't find anything and had us go back to diary. At that point the pediatrician told us it was probably "toddler diarrhea" that kids out grow. We took it upon ourselves to go back to the GI doctor who agreed doing a biopsy was the best choice. That morning he had no expectations of finding anything and came back with a swollen, irritated tummy full of bacteria and 9 ulcers in the upper small bowel. He was shocked. The biopsy for celiac came back positive and we are just waiting on the genetics test.

The test is not that big of a deal in my opinion. If you have any doubts then tell the GI doctor you want a biopsy done to test for celiacs. Thank god we fought for it. Also remember gluten-free diets before, or during any tests will really mess up the results.

My second daughter's symptoms where pretty much exactly the same as what you listed for your son, with the exception of the frequency of the stools (she would go for 4-6 days with out a BM and then have many BM's over the next day or two that were all very loose and sometimes watery). I wish we had done the biopsy, but at the time I didn't know much about the different tests. I just knew that the blood tests could come out with false negatives. So, after she had the negative blood test I took her off of gluten anyway, because I was diagnosed with Celiac a few months before. I was pretty sure it was gluten, because previously after all her problems had started I took her (and myself - she was nursing) off of all the 8 most common allergens including dairy and soy for over six months. I was very carefull and didn't buy hardly any packaged products.

All that to say my experience with my son has been very similar. I did take dairy and soy out of my diet for a little over two months before I tried taking gluten out. He showed no improvement at all, and I do believe that I truly was not getting any little bits in anything.

Now I think - like you said - it would have been helpful to have a biopsy on him as well, but I had been off of gluten for too long. :(

Thank you for sharing all that info.
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Posted 17 April 2010 - 11:23 AM

Terrified Mom, I do think I had 100% eliminated dairy and soy (as much as is humanly possible anyway - i don't know if some how someone who had touch dairy/soy had then touch him... etc...), but I am wondering if I should take it back out again now that we have been off gluten for a while. I had assumed that because we had no change at all before that it was not as all the problem, but maybe it is irratating the healing process. We haven't eaten out at all in six months - only foods from home. :) And I second the CAUSE SEEKING!

Katerzz, I agree with the demanding tests. The docs did do some, but I don't know of any others to do. Do you have any ideas of other test to do for these symptoms? If you do I could ask the doctor if we have done them yet. - I don't remember all that has been tested for.

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Posted 18 April 2010 - 02:09 PM

I'm not sure all the blood tests they did, but there was a bunch. They also did stool samples. He was skin tested for 14 allergens and then had the biopsy done. I plan to get copies of all of the records/tests once we are done (still waiting on the genetics test) and will post as soon as I can get a list of everything that they tested for.
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