Jump to content

  • 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):

Gluten Reactions

bobbdvm

By bobbdvm
in Coping with Celiac Disease

Recommended Posts

bobbdvm Newbie
bobbdvm
Posted

Hello i am new to this group, but have been diagnosed for about three years now. I have a question about reactions or "getting glutened" because I wanted to see if anyone shares my situation.

It is somewhat predicatble, and of course always accidental.

Generally starts 3 hours after meal, I get very hot and start sweating. I usually have profound vomiting for about 30 minutes and then pass out for 10-15 minutes. When I regain consciousness, I usually vomit a couple of more times, then develop profound diarrhea for about 30 minutes and then pass out for a few hours. On one occasion I had a gran mal seizure instead of passing out that required a trip to the E.R. The next day I' usually tired, but no further GI signs and 24 hours later I am fine.

Does anyone else have reactions like this?

Bob

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

Celiac.com Sponsor (A8-M):


Cheryl-C Enthusiast
Cheryl-C
Posted

Wow Bob, that sounds really awful. REALLY awful. I feel really bad for you. My response to a glutening is not like yours, so I can't be of much help. I will add though that my cousin vomits loads after coming into contact with gluten, and they told her that was more of an "anaphylactic-style" response than the typical GI-response. What does your GP say? Throwing up and passing out, with seizures, sounds extremely serious - are you sure there's nothing underlying?

bobbdvm Newbie
bobbdvm
Posted
  • Author

That is a concern of mine; I was diagnosed in my 40's and had been misdiagnosed for about 8 years with food allergy, IBS, liver disease, even cancer was offered as a differential before they finally figured it out. At the time of diagnosis I was 6 foot 1 inch and weighed 140 pounds! Now up to 180 pounds and doing well except for these severe reactions. The doc at the ER said it was a "remarkable" presentation, and the GI doc said it was atypical and to do my best to avoid exposure to gluten...well duh.

It's a little scary for me to go through these because I don't know if I'm going to seizure, or just pass out; and I don't always remember exactly what happens. It is really hard on my wife when I go through these as she is never sure if she is going to have to call 911 or just wait it out.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest ...
    3. Peace lily
      - Peace lily commented on Scott Adams's article in Latest Research
      2

      New Study Reveals How the Immune System Learns Which Foods Are Safe to Eat

      Hi everyone well I don’t understand totally,I look for gluten-free only. I seem to be super sensitive. I had a problem the other day don’t know why it happen . I’m the only that handles my food . My husband has pancreatitis he’s fine with me cooking gluten-free I’ve tried doing both it doesn’t work for me strictly gluten-free kitchen. But he can actu...
    4. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      4

      Skin issues

      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,061
    • Most Online (within 30 mins)
      10,442
    Francisco1007
    Newest Member
    Francisco1007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during the same time I was dealing with covid, digestive issues, eyes and skin.Considering I " should  be fine" not consuming gluten/wheat, taking vitamins for sibo and STILL feeling terrible.It has to be parasites. I also take individual eye drops prescribed, could there be an issue there? Anyways my pcp thinks I need therapy because again they don't acknowledge my digestive issues because in my records it shows im fine, hintz the reason I had to go back to bay area hospital:(  I thought skin issues maybe sibo related but I feel and have seen and seriously trying not to think about it because it's disgusting. 
    • Aretaeus Cappadocia
      Zaalouk moroccan eggplant salad

      By Aretaeus Cappadocia · Posted

      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
×
×
  • Create New...