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Nes

4 year old

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My 4 year old son was diagnosed with celiac nearly 2 months ago (confirmed by endoscopy). He has been off gluten for at least 7 weeks. We have made our entire house/kitchen gluten free, I pack his lunch, snacks, etc. I don't know how we could be any more careful. He's also off lactose.  The severe pain and sleepless night have definitely improved but he still has daily abdominal pain, with fairly bad pain a few times per week. Is this typical? I feel terrible for him and am hoping he just needs more time to heal? Curious how long it took for your children to feel better?!

 

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I think it depends on how severe the damage was. I know from reading other accounts that it can take months to "heal". My two year old had immediate improvement (like two weeks), but we were very lucky to have our pediatrition catch the celiac quickly (within two months of noticible symptoms). It sounds like you are doing an awesome job keeping him safe. The only things I can think of off the top of my head are play doh and shampoo. Those were two things we were warned about by our nutritionist based on age. Play doh is made with wheat and shampoo poses an issue because they don't always keep their mouths closed. Maybe check lotions, soaps, toothpastes, lip balm? It's crazy where gluten is hidden in things like art supplies too. Our guy is now three but still puts hands/toys in his mouth frequently enough to cause worry, so we carry baby wipes in the car and use constantly. Hand sanitizer (in my opinion based on similar peanut protein studies) doesn't kill the gluten protein. If he attends daycare or preschool I'd check there for sensory tables full of oats, play doh, art supplies, etc. If you feel comfortable that there's not cross contamination, I'd say he just needs more time to keep healing. We had our little man's celiac panel ran again after three months and then another six months gluten free. His ttg levels drastically improved each time. Good luck!! I hope he feels better soon; it's misery watching your kiddo feel sick!

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My daughter had severely atrophied villi when diagnosed. In 2 weeks her symptoms significantly reduced but it took almost 3 months for the majority to go away.  It does depend on each persons damage and whether they are high or low symptomatic  .  I think its fair to say give it at least 2-3 months to see the majority of symptoms reduce.  FYI playdoh was a HUGE problem for us as well as some school stuff like macaroni art,  shared snack table ,  birthday parties  . Get a 504 in place beforehand to make things go smoother.

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Have you taken lactose out of her diet?  Trouble digesting lactose might be a temporary side effect of Celiac Disease.  It is also possible to be lactose intolerant and Celiac.  You might try eliminating it and see if that helps.

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17 hours ago, Nes said:

My 4 year old son was diagnosed with celiac nearly 2 months ago (confirmed by endoscopy). He has been off gluten for at least 7 weeks. We have made our entire house/kitchen gluten free, I pack his lunch, snacks, etc. I don't know how we could be any more careful. He's also off lactose.  The severe pain and sleepless night have definitely improved but he still has daily abdominal pain, with fairly bad pain a few times per week. Is this typical? I feel terrible for him and am hoping he just needs more time to heal? Curious how long it took for your children to feel better?!

 

Do you ever eat in restaurants or at other people's houses?  I really can't imagine that anyone is 100% safe eating where gluten type foods are prepared.  Also, are you sure the kids aren't sharing foods at school? At our school's there are frequently shared snacks. Maybe he's accidentally getting some of the treats - Halloween candy, birthday cakes, celebratory snacks, etc?

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