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Newly (Mostly) Gluten-Free And Acting Wacky
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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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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.

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

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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.

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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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