Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Kind Of Celiac Episodes Do You Have?


little00blondie

Recommended Posts

little00blondie Rookie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cmom Contributor

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)

flourgirl Apprentice

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?

krebbecca Newbie
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!

jitters Apprentice

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.

Churellies Newbie

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!

dksart Apprentice

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:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jeanbean Newbie

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.....

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

    2. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

    5. - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,145
    • Most Online (within 30 mins)
      7,748

    Kundrey
    Newest Member
    Kundrey
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.