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avery's mom

2 Negative Tests...no Relief. What Next? 4 Year Old.

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Hi, I'm new to this site and have read and read and read many posts. My DD was born prematurely and had a few issues when born. She was only preemie formula for a few months and then found had horrible diareha and switched to soy formula which worked great. We kept her on soy milk when she turned 1 for a few months until she was tested by an allergist who insisted she was not allergic to milk and her pedi said it was ok to put her back on milk. We did that. But, when she was 18 months old and got a bad UTI and as a standard, i guess, was tested for kidney reflux , which she did have. But, on the xrays they also saw severe constipation. We never knew - she had BM's everday and never seemed in pain. Starting then we saw a gastro. We put her on Kondremul for quite a few months and had follow-up x-rays to show she wasn't constipated - we would slowly back off the kondremul and go on our marry way until it started back up again in a month or sow. She did did very well potting training at 2 1/2 , but by 3 1/2 she started having 5-6 accidents a day. seeing a uroligst and gastro - saying that she was having bladder spasms caused by the constipation. so...we've been on a med to help with bladder spasms, miralax for a few months....the meds have helped, she now only has 1 or no accidents in a day. but....my question is: could this be celiacs? the doc's don't seemed concerned about WHAT is causing the bladder spasms or the constipation - all they seem to care about is that it's better now. I don't want her on the med forever and i want to find out what's causing and fix THAT. she was tested for celiacs at age 2 and again at age 4 - both negative. Any thoughts about what to do next? I would appreciate any insight.

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I feel for your frustration with the medical profession but my biggest insight for you is don't give up trying to find out what the cause of her symptoms are, medications can mask symptoms and that's what they are treating the symptoms and not the cause.... i do know that it can take up to 12 months for the colon to recover from constipation. i also know that you can get negative results for celiacs. So be a pro active mother and make a pest of your self until they find the cause of her illness and good luck i hope you find the answer soon.

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A child that young will often test negative for celiac disease even if they have it. That's no comfort. What would you think about working with your dr to put her on an elimination diet to see if this problem can be related to a food sensitivity? If you come from a different angle to your dr, he might be more interested in your search for answers. Especially an answer that doesn't require much work on his part.

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Try the gluten free diet to see if it helps your little one's symptoms - you don't need a doctor's permission to try the diet.

While you are trying the diet, it may be worth it to get your child's records and find another doctor for a second (or third, fourth, etc) opinion.

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