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

Does Gluten Always Cause A Reaction?


Hala

Recommended Posts

Hala Apprentice

I just have a few questions re the mechanisms of coeliac disease. I'm a zoology student with coeliac disease (and associated conditions....gluten really reaked havoc on my body!) so am interested in the science, but I've always struggled with  comprehending the biology of the immune system. Maybe it's because mine's so rubbish, ha :P

Do we ALWAYS react to ingested gluten? Or does it sometimes 'slip through the net'? Obviously most of the time the body does react to glutenings (and boy do we suffer!), but could there be occassional times where the immune system doesn't respond?

ie., are antibodies produced immediately upon every exposure to gluten? And does some level of damage always ensue?

Don't worry, I'm not considering 'cheating' on the diet, I'm just interested in the mechanisms. :)


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



Celiac.com Sponsor (A8-M):



Deaminated Marcus Apprentice

Hi Hala,    I wondered the same thing.

 

I had procastinated going back on gluten to do the blood tests for fear of a wave of pain.

But it didn't happen like when I tested it 2 months after going gluten free +2 years ago. 

 

Now I'm consistantly eating bread everyday but the pain isn't consistant so I don't know what is going on.

psawyer Proficient

This is not an area of celiac knowledge that I have spent a lot of time on, so my thoughts may not be 100% informed. They have, however, guided me through almost thirteen years of being diagnosed with celiac disease and following the gluten-free diet.

Some people with celiac disease do not experience any detectable symptoms, even though there is damage to the villi. These "silent celiacs" never notice a reaction.

Celiac disease is a contest. Gluten causes the immune system to react. The more gluten, the larger the reaction. The reaction produces antibodies. Sensitivity, and therefore production levels, vary from person to person. The tests have limits and are not able to reliably detect antibodies at low levels.

Our bodies want to heal, and the villi slowly regenerate. How quickly this happens varies with many factors. Key ones are that younger people seem to heal faster, and that the more serious the damage originally was, the longer it may take.

So what does that all mean? It seems to me that as long as your healing rate is moving faster than the damage is being done, you are winning the game.

 

But if you want blood tests to be accurate (your insurance will only pay once), don't play around. Eat lots of gluten (a slice or two of regular bread a day) over a period of several weeks prior to testing.

Hala Apprentice

Hi Hala,    I wondered the same thing.

 

I had procastinated going back on gluten to do the blood tests for fear of a wave of pain.

But it didn't happen like when I tested it 2 months after going gluten free +2 years ago. 

 

Now I'm consistantly eating bread everyday but the pain isn't consistant so I don't know what is going on.

 

Hiya :). Back when I was eating gluten I didn't have particularly consistent symptoms either, although if I ate a gluten-heavy meal I definitely suffered heavily afterwards! But sometimes I wouldn't feel much of a reaction at all, or would feel crap after a non-gluten meal. Maybe some of the symptoms have time-lags? Or perhaps whilst the antibodies are always present, the symptoms come in waves? Tbh I felt so awful so much of the time I'm not sure the symptoms ever truly subsided!

Good luck with the testing, I hope you can say goodbye to gluten soon :)

 

This is not an area of celiac knowledge that I have spent a lot of time on, so my thoughts may not be 100% informed. They have, however, guided me through almost thirteen years of being diagnosed with celiac disease and following the gluten-free diet.

Some people with celiac disease do not experience any detectable symptoms, even though there is damage to the villi. These "silent celiacs" never notice a reaction.

Celiac disease is a contest. Gluten causes the immune system to react. The more gluten, the larger the reaction. The reaction produces antibodies. Sensitivity, and therefore production levels, vary from person to person. The tests have limits and are not able to reliably detect antibodies at low levels.

Our bodies want to heal, and the villi slowly regenerate. How quickly this happens varies with many factors. Key ones are that younger people seem to heal faster, and that the more serious the damage originally was, the longer it may take.

So what does that all mean? It seems to me that as long as your healing rate is moving faster than the damage is being done, you are winning the game.

 

But if you want blood tests to be accurate (your insurance will only pay once), don't play around. Eat lots of gluten (a slice or two of regular bread a day) over a period of several weeks prior to testing.

Thanks for the info :). I've actually already been diagnosed (very positive blood tests and completely destroyed intestines...the gastroenterologist said they were the worst he'd seen :/) and have been gluten-free for 6 months now, so I don't need to worry about testing or whatnot (which is free in the UK anyway, lucky us!). I was just curious about the science behind the disease.

gatita Enthusiast

I know from doing two gluten challenges and several accidental glutenings in the past year that my mileage really varies. Not only was the severity of my reactions quite different, so were the symptoms. I had a mild anaphylactic type reaction one time, and the next, I was terrified that eating pure wheat crackers would kill me, but they didn't. Just had the usual post-gluten stuff a few days later.

 

So in my experience, yes, it varies a lot.

 

And of course, in no way am I recommending experimenting with this for yucks, I just did it under my doc's supervision because we had such a rough time getting a diagnosis.

Hala Apprentice

I know from doing two gluten challenges and several accidental glutenings in the past year that my mileage really varies. Not only was the severity of my reactions quite different, so were the symptoms. I had a mild anaphylactic type reaction one time, and the next, I was terrified that eating pure wheat crackers would kill me, but they didn't. Just had the usual post-gluten stuff a few days later.

 

So in my experience, yes, it varies a lot.

 

And of course, in no way am I recommending experimenting with this for yucks, I just did it under my doc's supervision because we had such a rough time getting a diagnosis.

It'd be interesting to find out what causes the variation! Maybe it depends on the strength of our immune system at the moment of ingestion? Or the region of the intestines targetted?

Yep I would never experiment for 'yucks' :P. The destruction celiac disease reaped on my body led to me being hospitalised for several weeks on end this year. I'm still recovering from the awful damage and malabsoprtion, no way would I ever purposely make it worse!!! I want to feel better :(

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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    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

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.