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Toddler Improves On gluten-free Diet But Then Diarrhea Returns: Normal?
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My 19 month-old daughter, Sophie, was diagnosed with celiac disease two weeks ago, after 6 weeks of diarrhea, occasional vomiting and significant behavioral changes. Her antibody tests were negative but she is very young so we weren't surprised since those tests are unreliable under the age of two. Given that she has an impressive family history (grandfather with celiac, mom with Type 1 diabetes and celiac gene, brother with Type 1 diabetes), the gastroenterologist said to put her on a gluten-free diet. We did and we saw significant behavioral changes fairly within a week: she became less irritable, less clingy and had a lot more energy. After two weeks on a gluten-free diet, she had her first solid stool and, for the first time in 8 weeks, brought us her sneakers at 7 am and asked to go outside. The day after that wonderful solid stool, she started having diarrhea again, and this time it had mucous in it. She's now been having daily diarrhea with mucous. Is this the normal course of recovery with celiac? Are we inadvertently contaminating her food? I thought that she would be totally well by now. Oddly enough, even with the return of the diarrhea, her behavior and energy level, as well as appetite, are still markedly improved. I would love others to share with me what it was like when their toddler went gluten-free and how long it took. I'm very anxious that the diarrhea hasn't yet stopped and that it now includes mucous, which wasn't there in the beginning....

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Does she play with playdough? Is your house gluten free? Do you have pets eating gluten-containing food? Did you separate out any shared condiments (peanut butter, jam, butter, etc.)? Are there any stomach viruses going around your area right now (like norovirus was going around Portland)?

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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