Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Terrible Reaction, Don't Know Why


positivenrgfairy

Recommended Posts

positivenrgfairy Apprentice

Hello all. I am very new to this. I had an awful reaction today and can't figure out where it came form. First, my symptoms:

heartburn, terrible bloating feeling, severe depression and irritability, anal area pain

These are my most common symptoms, but I am also susceptible to a slew of other GI problems and acute skin rash but those haven't shown up yet.

I will tell you, I ate a cookie yesterday, thinking it was gluten free, then realized that I picked up the wrong bag at the grocery store. I took one bite out of, realized it was the wrong kind, and spit it out and then washed my mouth out. no reaction until 12 hours later.

today i ate:

banana and peanut butter

edemame

pirate's booty

starbucks coffee soy frappacino

then poof around 4pm I started having a terrible reaction and I don't know where it came from.

other than the cookie (and maybe a kiss from my husband 3 hours after he ate a sandwhich) I can't think of what would be doing this. this is a very SEVERE reaction - the worst I've had in a really long time.

any advice? My reactions usually show up really quickly. if it WAS the cookie, why did it hit me so much later and so hard?

Thanks in advance.


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



Celiac.com Sponsor (A8-M):



JillianLindsay Enthusiast

This is just a wild shot in the dark and I have no evidence to back this up.... but I always react to Starbucks coffee and no other kind. My symptoms are brain fog, major fatigue, and irritability/depression. Have you been drinking Starbucks beverages with no reactions in the recent past? Did you alert the barista that you have celiac disease and they need to sterilize the blender before s/he prepared your drink? Cross-contamination may be the culprit.

The other theory is perhaps you had an initially very mild reaction to the cookie (because you spit it out and rinsed your mouth asap) and then once you drank the coffee it sort of triggered or worsened the impact of the glutening?

Depending on how long you've been gluten-free, you'll likely start to react more strongly to accidental poisonings and it may take longer to see a reaction.

Hope you start feeling better soon!

Jillian

Hello all. I am very new to this. I had an awful reaction today and can't figure out where it came form. First, my symptoms:

heartburn, terrible bloating feeling, severe depression and irritability, anal area pain

These are my most common symptoms, but I am also susceptible to a slew of other GI problems and acute skin rash but those haven't shown up yet.

I will tell you, I ate a cookie yesterday, thinking it was gluten free, then realized that I picked up the wrong bag at the grocery store. I took one bite out of, realized it was the wrong kind, and spit it out and then washed my mouth out. no reaction until 12 hours later.

today i ate:

banana and peanut butter

edemame

pirate's booty

starbucks coffee soy frappacino

then poof around 4pm I started having a terrible reaction and I don't know where it came from.

other than the cookie (and maybe a kiss from my husband 3 hours after he ate a sandwhich) I can't think of what would be doing this. this is a very SEVERE reaction - the worst I've had in a really long time.

any advice? My reactions usually show up really quickly. if it WAS the cookie, why did it hit me so much later and so hard?

Thanks in advance.

ravenwoodglass Mentor

It could have been any of the three or all of them. Even though you spit the cookie out some of it would have gotten into your system the minute it went into your mouth. If possible try to get your hubby into the habit of brushing his teeth after he eats a gluten food. If he gets into the habit you won't ever have to hold him at arms length and ask him to go brush his teeth first, kind of a mood breaker.

Another thing is the pnut butter, is this jar a new jar that only you use? It needs to be as well as all condiments, butter etc. Even a crumb left by a bit of gluten can cause a reaction. Your dealing with an autoimmune reaction so the amount of pain we get can be severe from even the smallest amount.

I hope you are feeling better soon.

  • 3 weeks later...
Nat33 Newbie

I have researched and have been assured that there is no Gluten in Sonic's Java Chillers (It's mainly ice cream and coffee) yet everytime I have one, it gives me a lot of symptoms too. It has been suggested to me that for some reason the coffee might just irritate our bowels since they are more sensative than others.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,160
    • Most Online (within 30 mins)
      7,748

    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • mariamccl
      Hi, 25f who recently had a endoscopy procedure to diagnose celiac disease. Mum and uncle are both diagnosed celiacs. I've had symptoms over the past year - headaches that have become debilitating and frequent, feeling faint and nauseous with high heart rate, diarrhea and constipation, anemia, and recently my periods have become almost non existent. My doctor sent me a letter yesterday saying this " biopsies from the duodenum show some very mild features that could be in keeping with celiac disease but also could be due to other causes". I am waiting on an appointment to see him in the clinic to discuss this but in the meantime I wanted to check if anyone else has experienced this? I was eating plenty of gluten before my camera test and for the past 2 weeks have completely cut it out of my diet and I'm seeing changes in my bowel movements for the first time in my life! Headaches, dizziness etc are still there but maybe it takes longer for them to go away? Any help would be so appreciated -  I feel so lost in this whole process!! 
    • trents
      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  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:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
×
×
  • Create New...