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Did Your Kids Do This?


B'sgirl

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B'sgirl Explorer

My 18 month old has been on a gluten free diet for about 7 weeks now. He still has had gluten on occasion by stealing a snack off the church nursery floor or some relative slipping him a cookie at a gathering without realizing he can't have them. He has also been off dairy for about a week. He still has the sticky, sandy bowel movements at least every few days. But the most frustrating thing is that he has been waking up at night and no matter how many times I put him back to bed he gets back up and either whines for hours, or plays with his toys. I don't know if he is just hungry because he's not getting enough calories in his new diet, or if he is having stomach cramps, or something else. Do you think this is related to Celiac or his diet, or do I need to look elsewhere for a solution? Have any of you experienced this?


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Cinnamon Apprentice

Yes, we've had this and I'm sure it's from gluten. I can always tell if my son cheats because he will sleep poorly, and when he does sleep, he wets the bed, and he will be 12 years old next week! When he's gluten free, he sleeps well. I'll bet your son is getting glutened, or hasn't healed thoroughly yet. I can't imagine how hard it must be to keep an 18-month-old gluten free!

gfgypsyqueen Enthusiast

My daughter was up all night complaining of being hungry before she was diagnosed. She was fed all night too because she was so sick. So it was a bad cycle. After a few weeks of being gluten-free/CF she slept well and we only have problems when she gets gluten-free or dairy. Her behavior and wetting the bed are the first indicators that something has gone wrong.

I think after just a week or so the baby is still healing. Stomach cramps would probably be right. Just figure the baby has been used to diarrhea constantly and now all of a sudden the bowels are working right. I know mine had her first formed poop after a week or two on the diet. She was so happy.

BTW: if family and church aren't "getting it" about gluten-free food, think about a medic alert bracelet. That made a HUGE difference for us.

JennyC Enthusiast

My son was diagnosed at 3.5 years old and he had horrible sleep patterns as well. From the bm's and sleep patterns you are describing it sounds like he might still be getting gluten. If he is in an environment where he can pick gluten up off the floor, then it is likely everywhere and there is an enormous cross contamination risk. I know it's hard but you may have to make more adjustments to avoid cross contamination.

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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
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      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
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      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
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