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

Symptoms Several Days Later


valerie-s

Recommended Posts

valerie-s Newbie

I should have titled this "Symptoms Appeared Several Days Later?"

Okay, so my situation is slightly complicated. Maybe someone can wade through it enough to advise me.

I was never officially diagnosed celiac disease. I am hypo-thyroid (due to Hashimoto's Thyroiditis) and was going through some depression and fatigue, but my thyroid levels were all normal. My doctor suggested testing for celiac disease. I had elevated levels of one of the celiac disease antibodies, but not the other two. He recommended going off gluten to see how my body would feel. I did an elimination diet for 2 weeks, but felt no difference upon reintroducing gluten (or dairy, or corn, or anything else).

So, I decided to see a specialist. He did genetic testing and found that I have the Celiac gene. But he said I probably have not yet activated the disease and that I should continue to eat gluten.

No biopsy was done.

My primary doctor heard this, and convinced me that my body probably doesn't react well to gluten, even if I haven't triggered the disease yet. He suggested that I go gluten-free for six months to see how I feel.

Last Tuesday, I went to a very special anniversary meal at an extremely expensive restaurant. In a moment of weakness, I decided to eat a tiny amount of gluten for one night.

I have never had gastro-intestinal symptoms.

On Friday morning (2.5 days after ingesting gluten), I felt really sick and kept burping all day. In the afternoon, I threw up. I continued feeling sick that night. Saturday and Sunday, I was fine. I ate rice noodles and broth to calm my stomach.

But then, on Monday, I got really bad diarrhea - worse than I've ever had it. It has continued through today and shows no signs of stopping.

Is it possible that my symptoms are related to celiac disease? Everything I've read has said that symptoms are nearly immediate - could they really be delayed by three days? What has been your experience when you've accidentally consumed gluten?

Sorry this is so long. Thanks in advance for all of your help.


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



Celiac.com Sponsor (A8-M):



valerie-s Newbie

Oh, I forgot to add that I've been gluten free since April 22 - about 2 months.

Also, any general thought/opinions regarding my situation are appreciated - don't feel limited by my questions.

celiac3270 Collaborator

I'm not even going to try to understand the medical stuff, but all I know is that they don't have to be immediate. First, every Celiac has unique symptoms. Most got their symptoms shortly after eating gluten. For example, if they had diarrhea, they'd get it after eating a gluten lunch, or something. Another Celiac I know would be eating dinner and then have to run to the toilet and throw up. Then, he'd come back, be fine, and even eat dessert. My symptoms, which included cramping, vomiting, bloating, gas, and occasional diarrhea, didn't come at any particular time. I always ate a big NYC bagel for breakfast and had no symptoms from it. Rather, I'd get sick once every 1-2 weeks...vomiting, cramping, for about 24 hours...could it have been build-up of gluten? The diarrhea was random, the bloating was constant, and the gas was constant. I had other symptoms including floating stools, and stinky stools, but I noticed no connection between symptoms and the time of my meals.....it doesn't need to come right after....mine didn't. Most importantly, everyone's symptoms are different: for example, with weight, many w/celiac disease are really thin from malnourishment, yet others are overweight until they start the diet. Everyone is unique. Good luck.

-celiac3270

valerie-s Newbie

Many thanks -- I guess I just wanted confirmation that it could be the gluten even though the response was delayed.

I guess my post was too long for most people! :)

lovegrov Collaborator

I've heard of people reacting as much as 48 hours later, but I think that's pretty unsual. Your could be a gluten reaction but it also sounds like a possible stomach virus. It's not unusual with a virus to go through the throwing up stage and then have the diarrhea.

richard

Guest gillian502

I would push for more testing. It sounds like your symptoms are too varied and persistant at this point to rule anything out until you've been properly tested, including an endoscopy, maybe colonoscopy, and barium X-rays. Ask your dr. about some of these.

GEF Explorer

I agree... just keep pursuing the answers until the answers come.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,027
    • Most Online (within 30 mins)
      7,748

    EmmaGraceeee
    Newest Member
    EmmaGraceeee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.