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How Long For Recovery In Toddler?


shorebird

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shorebird Apprentice

I suspect my 15 month old has Celiac like I do. After months of barely growing, falling off the chart in weight, sandy stools, frequent BM, and rectal bleeding, I decided to put him on a trial gluten free diet. I saw an improvement in his symptoms in just a few days and over time, he started putting on a little weight so I've kept him gluten free (he's been gluten-free for a few months now). The thing is, he's still small for his age. Everyone thinks he's only 8 or 9 months old and are even surprised he can walk. He weighs 19 pounds (6th percentile) and is 29 inches tall (2nd percentile). I'm even still breastfeeding him in hopes it will help his growth. I know children tend to recover more quickly than adults but how long can I reasonably expect him to "catch up" in growth after going gluten free?

 

 

 

*note: yes I do plan on speaking with his pediatrician about this at his appointment in a couple of weeks. I just wanted to hear what others with experience thought about it. :)


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nvsmom Community Regular

It can take months to a couple of years for the autoantibody levels to drop to normal.  Until that time, his body will still be under attack so symptoms like nutritional deficiencies, anemia and slow growth may take some time to improve.

 

My guess is that he'll improve in a couple of month to 15 months from now.  

 

Sometimes growth doesn't improve much; my son has celiac disease or a gluten sensitivity and going gluten-free didn't help his growth much.  He is still slowly dropping down the growth chart, and his 2 year younger brother is a good inch taller than him now..... Not very helpful, am I?  :(

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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