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Undiagnosed Son, 13 Years Old


AlsMom

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AlsMom Newbie

Hello,

I am new to the forum and have a question pertaining to my 13 year old who has been feeling "gross" especially at night for some time now. We took him off gluten 2 weeks ago and he has been feeling much better. He felt rough for the first few days however and had a recurrence last weekend when he had a bowl of ice cream before bed. Yesterday (being Friday and just before the weekend)he asked if he could buy some fries at the school cafeteria even though he knew that donuts had been fried in the same oil a couple of weeks before. He figured that it would be a good food (his favorite) to "experiment" with. Last night was rough again as he couldn't sleep and felt gross (although not as awful as before) again (stomach hurt and just overall yucky...and whiny!).

Is it typical for these symptoms to show up at night? Why does he not feel gross until bedtime?? He also has a mild form of tourette's and some anxiety along with it and sometimes I wonder if that is why he is up at night (he feels "safer" around me when he feels gross.....he is vomit phobic!)

Any help would be appreciated!

Al's mom


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missy'smom Collaborator

I still have digestive discomfort at night sometmes-If I eat dinner early enough-not too close to bed time-4 hrs is better, and don't snack after dinner and avoid all the foods that irritate my system then I do much better. Otherwise things seem to sit in my GI track all night and I have discomfort, tension and loose stools in the a.m. I am very strictly gluten-free and have been for years. It's been a very long times since I got even just cross-contamination so my evening digestive discomfort is now due to other things-functional problems I would guess-at the very least some things are more difficult to digest, and now I know inflamation from food allergies and intolerances can contribute to my problems.

ocdsgirl Newbie

When I used to eat ice cream, I always had trouble sleeping if I ate it late. I get that "restless leg" feeling, but all over. I know if you mess around with going on and off gluten, it can screw up any medical testing, if you do decide to go that route. I think I did that to myself. I have an 11 yr. old son that is having some issues right now, so I know how you feel. I hope your son gets some resolution soon. It's frustrating.

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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. 
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