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Newly (Mostly) Gluten-Free And Acting Wacky


tommysmommy

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tommysmommy Newbie

My 21 month old son was just diagnosed with celiac after a terrible 2 month long illness. Our family of 5 has quickly gone gluten-free at home, and I'm obsessed with reading and learning more.

My husband has had stomache issues for 20 yrs, always baffled doctors, has rectal prolapse and likely bi-polar disorder (also sought help hot bit never diagnosed). I believe he has celiac too (havent tested yet), which would explain and help do many of his issues.

He has been eating gluten-free at home but has been cheating occassionally when out, mostly out of ignorance (this is so new to us). Last night he went put with a friend for a drink, got a gluten-free beverage but without thinking, ate a couple pretzels. He doesn't remember much else - his friend says he has 1 drink but threw up and went home. He remembers making 1 stop and came home 5 hours later, completely oblivious to time and not checking hid phone (not like him). Today he tried to work (he had hid own home improvement business) but can not remember doing the work, even though he got paid for it. He got lost in our own neighborhood on his way home. Came home and went to sleep, has little appetite.

Clearly he needs a doctor asap. It seems to me that after yrs of problems his body has so accepted the mostly gluten-free choices this week, he is getting wildly sick from gluten that didn't affect him the same way last week. I also suspect a serious vitamin deficency.

Sound familiar to anyone out there? Celiac is scaring us to death!


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kareng Grand Master

I would call the doc right away! It may have nothing to do with gluten. He may have had a stroke or something else that needs to be looked at right away.

jerseyangel Proficient

I agree with Karen, I think he needs a workup to determine what, exactly, is going on. Best of luck to him :)

ravenwoodglass Mentor

I agree with the others. Take him to the ER and tell them what has been happening. If he is hard to wake up call an ambulance.

rosetapper23 Explorer

I agree with the others....but, after being checked out, if the doctors find "nothing" wrong, it's important to know that ingestion of gluten can cause reduced blood-flow (oxygen) to the frontal lobes of the brain. This was only discovered a few years ago and accounts for some of the neurological symptoms suffered by people with celiac. And, yes, it could be that your husband is suddenly being bothered by this symptom because gluten was removed for a bit and then reintroduced. It's odd, though, that he would be reacting so soon after the gluten was removed. For many of us, after we've been on a gluten-free diet for a while, we become dizzy and suffer headaches when we accidentally ingest gluten. Celiacs sometimes suffer from depression or bipolar, too.

When your husband visits the doctor, he should request a thyroid test while he's there. His behavior might be explained by a hypothyroid condition like Hashimoto's.

Please let us know what happens!

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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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    • 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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