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Unexpected Results


Poppi

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Poppi Enthusiast

I have 3 bio children and 2 Vietnamese girls who live with us 10 months a year and go home to their Vietnamese family in July and August.

I wanted to have my 3 kids tested for celiac before the whole house went gluten free but my doctor didn't want to do it, she refuses to acknowledge my celiac despite the strong family history (my Father, my maternal grandfather and my mom are all celiac or at least gluten intolerant, my mom never had a biopsy). I tried to do a gluten challenge to get tested but was so violently ill half way through the first day that I couldn't continue so I have no "official" illness.

So we went ahead and made the house gluten free without testing the kids, it would have taken months to get a referral to a pediatrician and I was constantly getting glutened so I couldn't wait that long.

I was sure that my oldest and youngest were gluten intolerant but also sure that my middle son was fine. Boy was I wrong!

The oldest and youngest have had no change on the gluten free diet. My oldest is still an insomniac and my youngest still eats dirt. Her pica is getting better but I've also been cooking on cast iron for her every day.

My middle son who I thought was fine is a totally different kid. He is 6 now and has always been difficult to handle. Near the end of the year he was referred for evaluation by his school to see if he was autistic or if anyone could figure out why he was so unable to control his emotions.

2 weeks into being gluten-free he is calm for the first time in his life. He doesn't lose his temper, he is able to deal with disappointments and unexpected schedule changes, he's quieter and nicer to be around. It's amazing. He's sitting on the couch watching TV with his little sister right now (she's 2) and nobody is crying. They always fight but they've just been getting along so well lately. I love it.

Yesterday we had to leave a moms' group outing at a local cheese farm because all the other kids were getting ice cream cones and my 2 year old was getting really upset that we couldn't have ice cream too. Surprisingly my 6 year old was the one who gave her a hug, calmed her down and convinced her that it was okay to go home because mommy would give us ice cream there. Normally I would have been literally carrying them both kicking and screaming to the car.

Yay! :D


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    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
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