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Celiac Disease With Negative Test?

Myooshka

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Myooshka Apprentice
Myooshka
Posted

If anyone could give me some advice from personal experience that would be great. I have two sisters that are most likely celiac but not diagnosed yet and two nephews that are celiac. My son was constipated from birth and removing milk from his diet fixed that problem. After that he started to experience crumbly, sand like stool on and off so we tested him for celiac which was negative. That is actually how I found this forum was googling "crumbly sandy poop".

We put off his pooping issues to teething. Now all of his teeth are in and the last few weeks he has had a lot of these crumbly type poops with diarrhea and a lot of gas. We tested him again for celiac and again negative. His stool has always had an off smell to it as well.Doctors always blame it in teething or something else. We are seeing a pediatrician in a couple weeks. Our faith in doctors is an an all time low with our experiences and experiences of family and friends. Has anyone had their child experience symptoms of celiac,test negative for it and then eventually test positive? Can you have Celiac and test negative for it? If so is there another test that will show it if the standard test is negative? If so can you please let me know the name of the test. Also our local Celiac chapter endorses the home test and this is what we have tested our two year old son with. Does anyone have any experience with this test. Any other comments or suggestions? Otherwise our son has been very healthy, growing normally, although if the runs and constant pooping keeps up the way it has been the last few weeks I am concerned it could effect his weight gain.

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lizard00 Enthusiast
lizard00
Posted

Yes, you can test negative for celiac and still have it. That's me :D

And, testing in children is pretty unreliable, and becomes decreasingly reliable the younger they are. Once you have completed testing, if it doesn't indicate celiac, consider giving the gluten-free diet a go for maybe 6 weeks or so. Nothing speaks louder than a dietary response; for most it gives a pretty conclusive answer.

Myooshka Apprentice
Myooshka
Posted
  • Author

Yes, you can test negative for celiac and still have it. That's me :D

And, testing in children is pretty unreliable, and becomes decreasingly reliable the younger they are. Once you have completed testing, if it doesn't indicate celiac, consider giving the gluten-free diet a go for maybe 6 weeks or so. Nothing speaks louder than a dietary response; for most it gives a pretty conclusive answer.

Thanks for the reply, we are going to have the celiac test done and then are going gluten free. Can you please give me some tips for making my kitchen gluten free. Are there certain things such as kitchen utensils that I need to put away or certain things I need to do so there is no cross contamination?

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