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

Feeling Dumb

Sarah P

Recommended Posts

Sarah P Rookie
Sarah P
Posted

I was diagnosed 2 weeks ago and have been doing pretty good about staying Gluten Free. I know I am still dealing with some cross contamination as we don't have the money to throw all our cross contaminated food away, although we are working on it and I try to avoid it. But, last night I was out with my kids and my friend had cheesy bread. I talked myself into the fact that one little pieced wouldn't kill me. OH MY GOD. About an hour later it felt like I had a ball stuck in my esophogus and I woke up this morning and it is still there. It hurts so bad!! Aparently one tiny piece is THAT BAD. I think I have learned my lesson.

My dietician told me there would be slip ups but I feel like an idiot.

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

Think of it as training yourself successfully to be gluten free.......

pricklypear1971 Community Regular
pricklypear1971
Posted

Yeah, I'm at the point where when I pass a bakery with beautiful cakes in the window I literally see a box of rat poison. And my DH areas itch in sympathy and remembrance.

I ate some gluten-free Lays at my FIL's this week. Knew better (cc from gluteny hands in the bag, etc.). Within 30 minutes I wanted to hurl. Won't do that again.

IrishHeart Veteran
IrishHeart
Posted

Don't feel like an idiot, hon! ;) You did the most human thing there is. You tested it to see what would happen. Not only did you test gluten, but you went for dairy, too--wow, you are a daredevil :lol:

Maybe (subconsciously) you just needed to convince yourself that gluten is really that toxic to you and so, whatever teensy bit of "denial" was left just got squashed big time.

You're going to be all right! Drink a LOT of water today.

Best wishes!

Sarah P Rookie
Sarah P
Posted
  • Author

Thanks everyone! That makes me feel better. I went to the store again today and got some more gluten free food and and throwing some bad stuff out! Even got a new toaster. :lol:

Lisa Mentor
Lisa
Posted

I ate some gluten-free Lays at my FIL's this week. Knew better (cc from gluteny hands in the bag, etc.). Within 30 minutes I wanted to hurl. Won't do that again.

If you are having thowing-up issues (or hurling :unsure:) , you might have another intolerance. Many people have has issues with Potato chips and not necessarily related to gluten. You might look into soy or canola.

pricklypear1971 Community Regular
pricklypear1971
Posted

If you are having thowing-up issues (or hurling :unsure:) , you might have another intolerance. Many people have has issues with Potato chips and not necessarily related to gluten. You might look into soy or canola.

So far that particular feeling has been reserved for that one time. Only other time I've been quesy is from too much sugar/fat. Or the stupid iron pills. But potatoes are ok. I've been fine with other fried chips - corn, potato. I'm pretty ure it was cc from gluten. My FIL is a widower - and I am the only female - surrounded by every possible age of male - all of which slap gluten around and are not exactly super sanitary.

I knew better.

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

Celiac.com Sponsor (A8-M):


AVR1962 Collaborator
AVR1962
Posted

Don't feel dumb. At first I wanted to figure out just how sensative I was, I also wanted to make sure of what I was delaing with and reacting to so I did the same and every single time I had a reaction and the more you stay gluten-free you will probably find your reactions to be worse with time, at least I have.

  • 2 weeks later...
TracyandLyss Newbie
TracyandLyss
Posted

I have thought about doing the same thing..just trying it to see what would happen, but I haven't YET. My fear is that when I was diagnosed I had no symptoms what so ever. I have read many posts from people who stated they had mild symptoms to begin with and then when they did get gluten in their systems they got violently ill. I don't do ill well!!! I have only been gluten free for one month but our home has been gluten free for two, since my daughter was diagnosed a month prior. She also had no symtoms. I was told that a crumb or just the slightest cross contamination is as bad as eating a loaf of bread, does anyone know if that is true??

puppyrasier Newbie
puppyrasier
Posted

Yeah, I'm at the point where when I pass a bakery with beautiful cakes in the window I literally see a box of rat poison. And my DH areas itch in sympathy and remembrance.

I ate some gluten-free Lays at my FIL's this week. Knew better (cc from gluteny hands in the bag, etc.). Within 30 minutes I wanted to hurl. Won't do that again.

Thanks for the tip I just got diagnosed last week and am trying to figure this whole gluten-free and cross contamination thing out.

melikamaui Explorer
melikamaui
Posted

I think a lot of us have done that. Don't feel bad. I did it three times! I kept thinking that it was all in my head, and so I tested it on three different occasions. Not THAT'S stupid! :blink:

gailc Newbie
gailc
Posted

Thanks everyone! That makes me feel better. I went to the store again today and got some more gluten free food and and throwing some bad stuff out! Even got a new toaster. :lol:

I gave all mine away except I forgot the Beano, big mistake! I gave the food to a friend who is down on luck. Lost job, car died etc.

I let her decide to keep or throw away, some was quite old, some very fresh.

Like the other person said, don't eat canola. You can try it when you are better if you want to go through all that again.

gluten-free foods will be easier to find in the future as more and more people buy them. Sprouts has some, Whole Foods some.

Best thing to do is just eat fruits vegetables and gluten-free breads and fresh meat or fish and salads. That's a great diet.

I'm down to one slice of bread a day.

Tonite I make a gluten-free pumpkin pie.

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

      Am I nuts?

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

      My journey is it gluten or fiber?

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

      Anti-endomysial Antibody (EMA) Testing

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

      Just diagnosed today

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

      Am I nuts?

      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...
  • 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
      Am I nuts?

      By trents · Posted

      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
      My journey is it gluten or fiber?

      By lalan45 · Posted

      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
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      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
      Just diagnosed today

      By Scott Adams · Posted

      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
      Am I nuts?

      By Scott Adams · Posted

      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.