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

I Feel Incredible, Whats Going On? Advice

houdini

By houdini
in Coping with Celiac Disease

Recommended Posts

houdini Newbie
houdini
Posted

I just joined today so I could quickly tell my story and get your advice. (and THANK YOU for your advice, I need it) I am a 27 year old male. When I was 19-21 I lived in Mexico as a missionary and was sick nearly half the time. (most of us american boys were!) that coupled with stress, home sickness, stress, and stress, made life very different when I got back. At first I was fine, but I think about a year later or two later I started noticing I got sick anytime I ate what I later learned was "gluten." I also became lactose intolerant. When I ate gluten I would essentially feel like hell for 24 hours, until I woke up the next day. As long as I didn't do that again I was fine. Life as been a little stressful over the years because I never had the discipline to kick the gluten habit. So once or so a week I would feel like crap because I would eat the forbidden food. I should also mention that when I got tested a few years back the doctors said I was fine and really seemed to brush me off. It was very stressful because I felt my family and doctors simply didn't believe me.

I am reaching out to this forum because something strange (but amazing) has happened in these past few months. I can eat whatever the heck I want and nothing bad happens! Heck, I seem to have a stronger stomach the the average person for anything. Don't get me wrong, I don't feel as healthy when I'm eating all these breads as my diet before, but I feel great. WHAT HAPPENED? What in the world is going on. Is this some type of temporary trick of the body to get me all excited and then BAM! back to my old life? Have you ever heard of people getting over their intolerance to gluten. Again keep in mind I was never officially diagnosed with anything, but there is no question for the past 5-7 years I have had a gluten intolerance, and now for the past 4 months I seem to be perfectly fine. Bad news is I have gained about 15 pounds for all my pizza runs in the past months, making up for lost time! :D

Any advice would be greatly appreciated. thank you for your help

sincerely, Cameron

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

Celiac.com Sponsor (A8-M):


Adalaide Mentor
Adalaide
Posted

You could use this time to find a celiac savvy doctor and truly get tested for celiac, just in case. Since you have never been able to completely kick the habit it would be better to get a diagnosis if it is in fact celiac since that may give you the push you need to truly give it up for good. If it isn't celiac, there really isn't enough research done to be able to know what you may or may not be risking by continuing to eat gluten so I really doubt any of us could make a real recommendation about it in the long run. I will say though that imo if you aren't feeling as well as you could be, it is still a pretty clear indicator that they are doing something to you, even if it is just a little bit now. Like I said though, my thoughts are enjoy your pizza and find a doctor who won't brush you off and get tested. People here with more experience in the testing department than me can recommend specific blood tests and more info about a biopsy.

kareng Grand Master
kareng
Posted

Were you tested for parasites, etc? Maybe you just finally got everything back to normal - the good bacteria vs. the bad.

Have fun! Eat what you like. If you start feeling bad, get tested for Celiac when you have been eating a regular gluten filled diet for a few months. I realize this is a Celiac forum, but not everyone has Celiac.

Adalaide Mentor
Adalaide
Posted

Were you tested for parasites, etc? Maybe you just finally got everything back to normal - the good bacteria vs. the bad.

Have fun! Eat what you like. If you start feeling bad, get tested for Celiac when you have been eating a regular gluten filled diet for a few months. I realize this is a Celiac forum, but not everyone has Celiac.

I guess I just assumed that a doctor would have tested for whatever he was at risk for from Mexico. I suppose that is a pretty big leap considering all of our backgrounds. Hah!

nvsmom Community Regular
nvsmom
Posted

I agree with the others, get tested while you are eating gluten. It's a good time to do it.

I'll be the doom and gloom... I am pretty sure that I have had celiac my entire life but I did not feel sick my entire life. I had years where I was lifting heavy weights and had energy (minimal gut issues), and there was another year where I was in marathon training and running close to 100km per week... BUT there were years that my joints hurt, and I had a lot of stomach aches, fatigue and migraines. I know that most autoimmune diseases do not stay in a steady state, some times are better or worse than others. For you, after Mexico was a bad time and this might be a good time... I say this to stress that the problem (some sort of gluten intolerance or celiac) could still be there but for whatever reason, the symptoms are not; if I was you, I would get tested to make sure you don't have "silent" celiac and aren't doing damage to your body... besides a few extra pizza pounds. LOL ;)

gatita Enthusiast
gatita
Posted

Cameron, I used to live in Mexico and came back home with severe parasite problems that took a few YEARS to heal. And U.S. doctors are not aware of many of those bugs (they don't usually test for the two that got me bad).

So it's possible it took all this time for your own body to fight them all off, and while it was doing so, you were extremely sensitive.

But I agree with the others, now is a good time to get yourself tested for celiac! Just to be sure. While you are waiting, enjoy your pizzas. :)

AZGirl Rookie
AZGirl
Posted

I just posted my story which also has a "recovery" from stomach issues, but I still get powerful Brain Fog from eating gluten, but am not throwing up, etc... I am very interested in what the "Celiac Elders" have to say about this. Good luck to you!

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.

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.