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    Do you have questions about celiac disease or the gluten-free diet?

maggiemom

Other Test Suggestions

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My now 16 mos. old daughter has GI issues. Specifically, she goes between constipation (sometimes with blood in the stool from internal tearing) and very soft stools with undigested food in them. All of her stool is very foul smelling. We have been to a GI specialist and have had blood testing for celiac disease which was negative. Sorry, I do not have the numbers right in front of me. He also did blood allergy testing--all negative. Stool tests (fecal elastase, stool pH and reducing factors) all negative. He has diagnosed her with Toddler's Diarrhea and told me I do not need to follow up.

She has just had another hard stool with blood in it. I do not feel that it is an option to continue letting her go on like this. She is normally happy, however, on these days she stares off...doesn't smile as much as usually, her eyes are sunken in, etc. She also has a lot of trouble sleeping. She doesn't scream like she used to, but in my opinion, she has been dealing with with for her whole life and is just learning to live with it.

I took her off gluten at one point and felt she did better. I guess this will be my next plan of action--to take her off again, that is. I just wanted to hear any suggestions from any of you who have been through this of any other tests I should request. I am currently waiting for a call back from the RN at the GI clinic regarding a plan of action for my daughter. Any help would be welcome. Thanks.

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To give a 'diagnosis' of so-called toddler diarrhea is every bit of much as a copout as IBS. All it means is, that the doctor hasn't got a clue what is wrong, and doesn't care enough to figure it out. It is NOT normal for a little kid to have intermittent diarrhea and constipation, which is very common for celiac disease.

The tests are EXTREMELY unreliable in children under six. A negative test result means nothing. Personally, if I was you, I would have your child tested by Enterolab. It can't diagnose celiac disease, but will tell you if your baby is reacting to gluten, as well as tell you her genes.

Since the Enterolab testing will still be accurate within a year of starting the gluten-free diet, you can put her on the diet even while the test kit is on its way to you. I say, the sooner you start her on the diet, the better. In young children, trying the gluten-free diet is the best and most reliable test of them all.

Her other symptoms sound a lot like celiac disease as well. Sunken eyes could be from dehydration, which is dangerous. Make sure she gets enough liquids.

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To give a 'diagnosis' of so-called toddler diarrhea is every bit of much as a copout as IBS. All it means is, that the doctor hasn't got a clue what is wrong, and doesn't care enough to figure it out. It is NOT normal for a little kid to have intermittent diarrhea and constipation, which is very common for celiac disease.

The tests are EXTREMELY unreliable in children under six. A negative test result means nothing. Personally, if I was you, I would have your child tested by Enterolab. It can't diagnose celiac disease, but will tell you if your baby is reacting to gluten, as well as tell you her genes.

Since the Enterolab testing will still be accurate within a year of starting the gluten-free diet, you can put her on the diet even while the test kit is on its way to you. I say, the sooner you start her on the diet, the better. In young children, trying the gluten-free diet is the best and most reliable test of them all.

Her other symptoms sound a lot like celiac disease as well. Sunken eyes could be from dehydration, which is dangerous. Make sure she gets enough liquids.

I second Ursa's suggestions for Enterolab and going gluten free right away! You could just go gluten free, but the test results will help you know for sure. While you could theoretically get a false negative and still try going gluten free, a positive result will really help you stick with the diet - especially if your dc is super sensitive to cross contamination. Without the test results, you might end up thinking gluten free isn't working, when really it might be that you have more to do. KWIM? Also - go with the full panel and make sure you test casein, too. The casein test will let you know whether you are dealing with a casein issue or a lactose issue if you do have dairy problems down the line. The nice thing about Enterolab is if you don't test everything initially, they keep the sample for about 6 months. If you decided to do additional tests within that time period, you don't have to send another sample in. We are now having them check soy on our two boys from the samples we sent in before.

Move quickly. I wish I had known what to suspect with my 2 yo when he first started having problems. He went from being the world's happiest, friendliest, most adaptable, fun, active toddler to an almost nonfunctional toddler who didn't play at all, cried at every transition, only ate four things, and couldn't have strangers talk to him, look at him, or even talk about him without screaming. It happened very, very quickly. He was diagnosed with sensory processing disorder and is doing much, much, much better since going on Prevacid for his late-onset reflux and going gluten/dairy free 3 months ago (and soy now, too). It breaks my heart to think that I could have spared him the downward spiral if I had only known. At least we figured it out early and I believe he will fully recover.

Blessings,

Cathy

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