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mysterybaby

Do You Think It Will Work?

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Where to begin. At 20 weeks in utero, doctors saw that there was a problemwith my now 4 year old daughter's bowels--assumed something similar to her father (malrotated bowel). She has been a mystery baby to every doctor ever since. She just couldn't poop. Has been tested for everything under the sun. You name it. She's been tested. At 4 weeks of age she had an iliostomy (they thought this was a motility issue in her colon---they unofficially diagnosed with her bowel dismotility--simply a generic term for her bowels just don't work properly.) Motility studies later, biopsies later, everything seemed fine with her colon, so we all decided to try hooking her backk up and give her a chance to live a normal life. It didn't work. She had an emergency surgery 24 hours later to put the iliostomy back in. More motility studies, more biopsies, 2nd opinions, 3rd opinions. No answers. Finally decided that for whatever reason, her colon was just no good. We had her colon removed so she could poop like you and I---her small intestine was attached to her rectum. She's been pooping ever since. Problem: very distended belly (looks 6 months pregnant). More testing---docs have treated her for dismotility, bacterial overgrowth (infact she's been on flagyl and other meds all her life). Nothing works. She is very fatigued. Her latest study indicated that she has ulcers on her small intestine. Although she did not test positive for anything including Crohn's Disease, Celiac's Disease, etc, docs feel that she has Crohn's and want to treat her with Remicade, a medication linked to cancer of the spleen. Not an option.

I started researching and thought....maybe celiacs? Symptoms: big belly, fatigue, canker sores on lip, pale skin coloring. We have been on gluten free diet for a week now. We have not noticed a change in her belly. Has anyone else been through anything remotely like this? We are scared. I am so desperately hoping that this is it and she can finally have relief. Afraid that the hope we have in this diet is going to crash down on us and leave us with no options.

Stressed out mom:(

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Guest j_mommy

I just want to say that I am sooo sorry you guys are going through that!!!! I can't imagine watching a child go through all that. Hugs to you!

Some people take awhile to see results...I think I saw some results in a couple of weeks. So give it some time and I hope you find some answers!

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I had a little sister that was diagnosed as celiac at a year old. I can't remember when the belly went away. Seems like it was there for a few years, but it's so long ago. Are any of the symptoms going away? With all she has had going on it may take time for the swelling to go down.

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Wow. That is so much to go through with a little one. I'm so sorry it has been so rough. I do hope she gets to feeling better soon.

My best friend has Crohns and also had her large intestine removed and was "re-plumbed" so her small intestine does double duty. She has also undergone the Remicade treatments. Granted, she made that choice at age 27, not age 4 so I can obviously see why giving a medication linked to any type of cancer is something you wouldn't want to do for your "baby." However, my friend has had great success with Remicade and has a much higher quality life because of it.

I really hope the gluten-free diet will help. It's really not too hard to do and not very expensive if you focus on the whole, natural foods rather than gluten-free substitutes. It took several weeks for my daughter's belly to flatten a bit. There are many other dietary adjustments you can make as well, such as removing dairy and soy which often causes problems.

This is another odd question. It has been brought up that excessively thick/long eyelashes is a trait of Celiacs. When I went to a Cel-Kids meeting last weekend and saw other Celiac kids all in a room together, I never saw so much fair skin and lucious eyelashes in my entire life! Not that eyelashes are a method of diagnosis, but it might be another indicator as well. My daughter has thick, long eyelashes and will never need to use mascara a day in her life!

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This is another odd question. It has been brought up that excessively thick/long eyelashes is a trait of Celiacs. When I went to a Cel-Kids meeting last weekend and saw other Celiac kids all in a room together, I never saw so much fair skin and lucious eyelashes in my entire life! Not that eyelashes are a method of diagnosis, but it might be another indicator as well. My daughter has thick, long eyelashes and will never need to use mascara a day in her life!

:blink: I've never heard of that, but-- both my sons and I all are very fair skinned, and have really thick, long lashes! Very interesting.

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Core... feel bad for you... just to tell you, 9 months on, my daughter still has a belly, except now i hope that its fat :D (thats all in my dreams, coz its rock hard!)

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