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What Kind Of Celiac Episodes Do You Have?
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I was just wondering what anyone else experiences when having a "celiac attack" as I call it (I know some people have no symptoms at all). This is the second time this month that I've been this sick, and I assume it's from accidentally eating or coming in contact with gluten (my daughter and I are super sensitive)...

I know this is gross, but basically- it starts 1-2 days before with nausea, and then it hits me hard. I'm up ALL night (no sleep, for sure) with extreme depleting diarrhea, vomiting, I get faint and shaky (and my face gets completely white), and I get so weak I could prob. use an IV or something. The weirdest part of all? Before everything happens, I start with these awful burps that literally smell as if I'm rotting from the inside (which with celiac, we kind of are if ingesting gluten!) My daughter used to get those awful burps and we would moan and groan, but now I also get them during an attack....

Does this sound familiar to anyone else? Anyone have similar symptoms? Any thoughts, or what are your own attacks like? Thanks!

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I totally understand what you're going through and it definitely sounds like a celiac attack to me. I too suffered from those burps before diagnosis. I thought it smelled like very rotten eggs. Once I started in with those burps, I would tell my husband I was going to be up all night in the bathroom and I always was. After being gluten free for awhile, they eventually stopped, for which I am very thankful! B)

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Burping? EVERYTHING makes me burp! I feel like such a pig sometimes. Even a glass of water makes me burp. I'm begining to think that I have sensitivity to any food. I'm so tired of feeling sick, feeling like a human helium balloon, like I need to stay near the bathroom 24/7, of feeling so absolutely drained of any energy. Sorry....guess I'm having a bit of a pity party here. I know I'm not getting any gluten...am starting to act paranoid about it, checking everything, cleaning everything that might touch my food, not going out because I'm afraid to trust anybody else touching my food. I have started keeping a food log to see if something else is doing it.....except that everything I eat makes me sick. Not eating is not an option......is it?

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Does this sound familiar to anyone else? Anyone have similar symptoms? Any thoughts, or what are your own attacks like?

At first I would get stomach aches and end up in the bathroom for several hours. I also suffer from stomach bloating from actual gluten, although not from cross-contamination. All in all, the same symptoms that I had prior to diagnosis.

After about 5 months of being gluten-free I first experienced a different reaction: a warm feeling which spread through my body. It was later accompanied by my usual bathroom episodes and lasted off and on about 2 days. I still get that every once in a while, usually by a bad contamination or actual gluten. It was pretty scary - about the time I wanted to go to the hospital it would let up and I'd be back in my usual symptoms.

If you just keep reading you'll see that the responses are varied from person to person. However, trends I've noticed are that people get similar reactions each time it happens. The best thing to do is stay calm and be prepared to see a doctor if the symptoms last a long time or are a lot more severe than usual.

Hope this helps!

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My reactions aren't of the "digestive nature". Unfortunately they are more neurological and aren't always immediate so I have no idea what or when I got into something.

It usually starts with a rapid heartbeat and sometimes a weird numb/pinched nerve feeling in my left shoulder blade, always in the same place. If I am glutened at night I am awake all night with insomnia. My brain just doesn't stop and its like I'm thinking on at least 10 different levels. I have different songs going through my head, thinking of things that happened years ago, etc. Its like I have radio stations playing all night. I also get hot flashes, and also "break wind" as the episode is dying down. Not fun! My poor husband... :D

Headaches are also a guaranteed symptom of gluten.

Fatigue and body pain are constant.

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For me it's immediate stomach pain and nausea. If I have ingested something very clearly "gluten-ified" I will eventually start throwing up for a few days and then cannot eat properly for another week. Headaches always occur.

I was just wondering what anyone else experiences when having a "celiac attack" as I call it (I know some people have no symptoms at all). This is the second time this month that I've been this sick, and I assume it's from accidentally eating or coming in contact with gluten (my daughter and I are super sensitive)...

I know this is gross, but basically- it starts 1-2 days before with nausea, and then it hits me hard. I'm up ALL night (no sleep, for sure) with extreme depleting diarrhea, vomiting, I get faint and shaky (and my face gets completely white), and I get so weak I could prob. use an IV or something. The weirdest part of all? Before everything happens, I start with these awful burps that literally smell as if I'm rotting from the inside (which with celiac, we kind of are if ingesting gluten!) My daughter used to get those awful burps and we would moan and groan, but now I also get them during an attack....

Does this sound familiar to anyone else? Anyone have similar symptoms? Any thoughts, or what are your own attacks like? Thanks!

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Yep, all of that.

It starts with a weird tightness in my jaw within 10-15 minutes of being glutened. Next comes "THAT" headache and then the nausea/belly pain followed closely by the abdominal distension and burping. Huge, loud, gross, frequent, uncontrollable burps. And I wish it would end there because then the pain starts. My joints swell in my hands and feet first, then my neck and eventually everywhere else. Brain fog, fatigue, indigestion etc. Sometimes it's worse than others, sometimes there's also eye twitching, nerve pinching, awful diarrhea or constipation, insomnia, depression, mouth ulcers and acid reflux. The worst times break down my immune system and I get sick, last time I had a series of infections from my ear to my sinuses and then the flu that lasted over a month.

Loads of fun. I will never understand people who cheat. :huh:

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I'm actually having an attack right now, it's my 4th day of pain and I can't figure out what I have accidently ingested. That's the worse part for me - overanalysing and getting depressed feeling like I've just taken 4 steps back from the wonderful 2 steps forward I was so happy about earlier in the week. Terrible gas, constipation, irritability and insomnia always accompany the pain. But last night I had a hot bath with 5 drops of "lavender" essential oil (therapeutic quality) and I actually fell asleep in the bathtub. I slept all night without waking. For insomniacs I would recommend it.

I get real nasty sometimes with the family when I get glutened - not easy to live with my mood swings but I just hate having this disease. I feel like I'm being punished despite my best efforts to take good care of myself. After reading some of your responses, I guess I can't complain too much as my episodes don't include frequent bathroom visits or vomiting, or burping.

take care my friends, it's nice to know we have some place to vent.....

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    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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