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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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    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
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      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
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      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
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      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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