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The Miracle That Is The Gluten Free Diet!


inskababy

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inskababy Rookie

I cannot believe what a difference this had made for my oldest son! My youngest son had a celiac crisis and was diagnosed last month. I started to suspect that my oldest son might have gluten issues as well...after doing lots of reading, I realized he had very mild GI symptoms that could be linked to intolerance. He is almost always sick...lots of diarrhea episodes that have gotten increasingly worse, to the point of not being able to hold it after a taste of pretzel. He's also a very late talker, and while very sweet tempered, has some pretty crazy tantrums from time to time...ones that last for hours.

I got him tested two weeks ago and took him off gluten immediately thereafter, and I swear a different child is living in my house. He's chattering away all day now, with 10-15 new words a day -- he's sleeping 12 solid hours at night when I was lucky before to get 4 before he was crying for me to come get him -- not a single time out for two weeks -- no diarrhea and his first truly solid poop in 2 years. First time it didn't float either! It took forever to potty train him because he hated getting diarrhea in his big boy pants. He chows his dinner every night and has lost most of his pickiness issues. He willingly went shoe shopping and got his haircut without flipping out for the first time ever. He's gained 1/2 lb in just two weeks. Oddly enough I had to take his pants in on elastic despite weight gain because apparently his tummy has lost some swelling.

His blood tests came back two days ago as negative for celiac disease, but he was anemic which the dr said was a red flag regardless of the test result. The doctor felt strongly that he would still benefit from a gluten free diet (umm, duh) and thinks he does have celiac disease, given that my husband and youngest have it and he's gotten so much better. When we went to go get tested, he was scared of her, wouldn't speak and cried during the blood draw. When we went back for results, he bounced in, jumped on her lap and just started chattering away all while letting her actually examine him. She was blown away.

This is AMAZING. I'm just in tears...both in gratitude for the fix and that I'm sad that I didn't realize sooner that he wasn't just "delicate" or "high needs" or "sensitive" -- he was sick. I would be cranky all the time if I never felt good too.


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MySuicidalTurtle Enthusiast

Congratulations!

taweavmo3 Enthusiast

I'm so happy for you! I too have one child that tested positive after being very, very sick for a long time. Not too long after that, I ended up putting all my kids on the diet even though their tests were negative. We saw such positive results, we haven't looked back since! Hope you continue to see improvement, it's great to see the progress happen so fast.

lizajane Rookie

me, too!!!

i was diagnosed in March AND my father in law has it. so seeing some possible symptoms in my 4 year old was enough for me to try gluten free for him. We didn't even have him tested, just took him off gluten. he finally sleeps all night (i wish he slept past 6am, though!) and he is pleasant nearly all day every day. and the tummy is gone!

hooray for you and your family!!!

CeliacMom2008 Enthusiast

Isn't it just amazing! We also saw dramatic improvements in so many areas of our son's life. And we too wished we'd known sooner. When I look back at all the Ibuprofen we gave him just so he could get some sleep at night (he'd complain of his ankles and legs hurting so much as a toddler), it breaks my heart to know that his little body needed Calcium to grow properly. Or how much of his little childhood he slept through, because "he's a sleeper, you know." And all the doctors that told us he wanted attention at night, his arches weren't formed yet, he might have juvenile arthritis so let's get him tested, his intestinal issues are because he eats so many fruits and veggies, etc...UGH!

He is soooo much healthier, happier, active, etc. I'm so glad your little guy is doing so well too!!

ang1e0251 Contributor

I'm so glad you have found the solution for your little guy! A sick child is such a worry.

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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.
    • MogwaiStripe
      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. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      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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