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

Having Symptoms Again And Not Sure Why.


MarylandMan

Recommended Posts

MarylandMan Newbie

After becoming terribly ill for months a year ago, I went strictly gluten free. I started feeling better right away and a year later I was back to feeling great and in excellent shape. Two and a half weeks ago I traveled for business and had to try to stay gluten free eating out. In the middle of the trip I became really sick. Since then I have been feeling better but on multiple occasions I have had symptoms and I am struggling to eat even though I am back to following my diet.

I am hoping that someone can tell me if they have ever experienced something similar. I hate that this is making me question if I have some issue other than gluten, especially with the mental symptoms I start to second guess what I was so sure of just three weeks ago.


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

It's normal to struggle from time to time when recovering from a glutening. I've had it bother me anywhere from a month to a day. I don't know why it varies - perhaps the volume consumed? Perhaps one time it set off an AI reaction?

Digestive enzymes with meals, probiotics, antacids, whatever it takes. Working out/exercise helps me (sort of like sweating out a hangover?).

shadowicewolf Proficient

Could be explained as being cross contaminated some where.

GFinDC Veteran

It could just be ongoing recovery from your glutening.  It's not  a 5 minute process.  And or you could be re-glutening yourself from time to time by eating something that is cross contaminated.   When your gut is raw, irritated, and inflamed it is not surprising if it doesn't digest food well.  It would probably help to stick to whole foods and a simple diet for a while and no eating out.  You may need to take your food to work rather than eating out.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/
 

dilettantesteph Collaborator

I find that when I have been recently glutened, I am more sensitive to trace gluten.  I think that it would help to go on a super gluten free diet of mainly whole foods until you heal again, and then you would probably be able to go back to that old diet.  Some of us seem to get sensitive to lower levels as time goes on, but in your case it seems more like you just have to reheal new damage.

 

Gluten's effect on my brain makes me question everything too.  I hope that you feel better soon.

MarylandMan Newbie

Thank you all for your advice and support. This life style change has been a learning process for me as I am sure it is for everyone. My best to you regarding your own health. I hope to get my condition under control and eventually be able to help others by sharing my experience as you have.

  • 2 weeks later...
ljay Newbie

After becoming terribly ill for months a year ago, I went strictly gluten free. I started feeling better right away and a year later I was back to feeling great and in excellent shape. Two and a half weeks ago I traveled for business and had to try to stay gluten free eating out. In the middle of the trip I became really sick. Since then I have been feeling better but on multiple occasions I have had symptoms and I am struggling to eat even though I am back to following my diet.

I am hoping that someone can tell me if they have ever experienced something similar. I hate that this is making me question if I have some issue other than gluten, especially with the mental symptoms I start to second guess what I was so sure of just three weeks ago.

Sometimes people who are gluten sensitive or have celiac disease don't know that they also have sulfite sensitivities. It's in so many of the gluten free prepackaged baking products and is in non-organic tapioca starch, potato starch and cornstarch. Because it's used in the processing at the beginning companies don't have to make that know to us because it's only a certain percentage of redidue left in the product so as to be considered negligible. To many of us it's not negligible as I can vouch for, and it can cause many of the same symptoms as gluten intolerance. I wish this was made known by the celiac and gluten intolerance web sites.

ljay


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.

  • 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. - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    2. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    3. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    4. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

    5. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
×
×
  • 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.