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

I Just Want To Fuss!

CajunChic

Recommended Posts

CajunChic Explorer
CajunChic
Posted

I was going to post on Facebook my frustration, just for support, but remembered I'm the only celiac I know! I find it so frustrating that I watch every morsel of food that goes in my mouth. Then sit for a "gluten-free" meal in a restaurant and get to be sick for a week! I hate that one half of a meal gets to dictate how I feel for the rest of the week! I sure wish they'd invite me in their kitchen to help clarify a few things.... Ok rant over!

After all that, however, I'm grateful for a diagnosis : ) at least I KNOW what's happening.

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

Celiac.com Sponsor (A8-M):


NoGlutenCooties Contributor
NoGlutenCooties
Posted

I hear you.  Not being able to safely eat out has been the hardest part of this to deal with for me.  There are things you can do to make it "safer" but there's no way to be truly safe unless they are certified gluten free and actually know what they're doing.  I just try to keep reminding myself that the trade off is that I get to be healthy.  And kick osteopenia's butt.  :)

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

Yeah that's why I don't go out to eat until I'm feeling better. Of course when I tell "normal" people that, their faces drop with incomprehension. There is so much chance of cross contamination in restaurants. I don't trust the people that work there to be careful. They're busy, and they don't get that a knife that just cut a sandwich is no longer a gluten free knife no matter what you may have ordered.

 

There are places that people have had good luck with, certain restaurants take it pretty seriously. It is really hard to be different. A lot of people have no idea what it's like to have to think about everything that goes in your mouth. I miss those days too.

w8in4dave Community Regular
w8in4dave
Posted

I have found a couple of restaurants I feel safe in , I know! I am lucky in that respect! I am also lucky I have friends who support me! They are always inviting us over, letting me know what they are making and ask me if I can eat it. I usually say you make what ever you want I will bring something. They are ok with that! I am so afraid of being CC'd ! So I bring a small main dish and a side. :) It's all good! 

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. QueenBorg
      - QueenBorg replied to QueenBorg's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      New to gluten-free

      Thanks for the information. I will definitely be doing a lot more investigating in the future!
    2. Scott Adams
      - Scott Adams replied to Rebeccaj's topic in Coping with Celiac Disease
      1

      symptomatic ?

      Living or working in environments where gluten exposure is a constant risk can be incredibly challenging, especially when neurological symptoms are involved. For those with celiac disease or severe gluten-related disorders, airborne gluten (like flour dust in kitchens or shared workspaces) can trigger indirect exposure through inhalation or cross-contact...
    3. Scott Adams
      - Scott Adams replied to Grahamsnaturalworld's topic in Related Issues & Disorders
      2

      Refractory celiac disease

      It’s incredibly frustrating when specialists don’t grasp the urgency of worsening symptoms, especially when neurological involvement is at play. For refractory celiac disease (RCD) diagnosis in Adelaide, your best bet is to seek out a gastroenterologist with specific expertise in complex celiac cases. Consider reaching out to: The Royal Adelaide Hos...
    4. Scott Adams
      - Scott Adams replied to Hummer01's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Diagnosis confusion

      Your blood test was not negative (TTG-IgA result - 4 where <4 negative), but looks borderline if above 4 is positive or weak positive, but you can still have celiac disease with negative blood test results, although it's not very common: Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response...
    5. Scott Adams
      - Scott Adams replied to QueenBorg's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      New to gluten-free

      Welcome to the gluten-free lifestyle! It’s great to hear that eliminating gluten has already helped with your fibromyalgia symptoms—that’s a huge win in just three weeks. Mistakes happen (especially when traveling!), so don’t be too hard on yourself. Each slip-up is a learning experience. The following two lists are very helpful for anyone who is ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,706
    • Most Online (within 30 mins)
      7,748
    Ionos
    Newest Member
    Ionos
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • QueenBorg
      New to gluten-free

      By QueenBorg · Posted

      Thanks for the information. I will definitely be doing a lot more investigating in the future!
    • Scott Adams
      symptomatic ?

      By Scott Adams · Posted

      Living or working in environments where gluten exposure is a constant risk can be incredibly challenging, especially when neurological symptoms are involved. For those with celiac disease or severe gluten-related disorders, airborne gluten (like flour dust in kitchens or shared workspaces) can trigger indirect exposure through inhalation or cross-contact, though true celiac reactions typically require ingestion. However, non-celiac gluten sensitivity (NCGS) or wheat allergy can sometimes cause airborne-triggered respiratory or neurological symptoms (e.g., headaches, brain fog, or even seizure-like episodes in rare cases). Your focal seizure could stem from chronic inflammation, vagus nerve irritation, or neuroglial activation if accidental ingestion occurred—but it’s also worth exploring PTSD-related responses if anxiety around exposure is severe. Many with celiac report delayed neurological symptoms (hours to days later), making it hard to pinpoint triggers. Since your family isn’t gluten-free, shared kitchens may pose risks (e.g., crumbs, toaster use, or cookware residue). Suggestions: Workplace Safety: If airborne flour was a factor, request accommodations (e.g., ventilation, PPE) under disability protections—though proving causality is tough. Medical Follow-Up: Push for neurological testing (EEG, MRI) to rule out other causes, and consider a gluten-free household trial to see if symptoms improve. It’s unfair you were let go without clearer answers. Keep documenting symptoms and exposures.
    • Scott Adams
      Refractory celiac disease

      By Scott Adams · Posted

      It’s incredibly frustrating when specialists don’t grasp the urgency of worsening symptoms, especially when neurological involvement is at play. For refractory celiac disease (RCD) diagnosis in Adelaide, your best bet is to seek out a gastroenterologist with specific expertise in complex celiac cases. Consider reaching out to: The Royal Adelaide Hospital’s Gastroenterology Department (ask for clinicians affiliated with celiac research or autoimmune disorders). A university teaching hospital (e.g., specialists at the University of Adelaide’s medical network often handle refractory cases). Celiac Australia’s clinician directory (they may have vetted specialists familiar with RCD). Since your symptoms are escalating, emphasize the neurological progression (e.g., neuropathy, ataxia) when booking appointments—this often flags urgency. You might also request repeat biopsies, TTG-IgA testing, and HLA-DQ2/DQ8 gene testing to rule out complications like RCD Type 2 or overlap conditions (e.g., gluten ataxia). If local options fall short, telehealth consults with celiac-focused centers in Melbourne or Sydney (e.g., The Alfred, RPAH) could provide second opinions. Keep advocating for yourself—you deserve answers. We also have a ton of articles on refractory celiac disease here: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/
    • Scott Adams
      Diagnosis confusion

      By Scott Adams · Posted

      Your blood test was not negative (TTG-IgA result - 4 where <4 negative), but looks borderline if above 4 is positive or weak positive, but you can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
    • Scott Adams
      New to gluten-free

      By Scott Adams · Posted

      Welcome to the gluten-free lifestyle! It’s great to hear that eliminating gluten has already helped with your fibromyalgia symptoms—that’s a huge win in just three weeks. Mistakes happen (especially when traveling!), so don’t be too hard on yourself. Each slip-up is a learning experience. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • Create New...