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

Celiac And Alexithymia?

McMoody

By McMoody
in Coping with Celiac Disease

Recommended Posts

McMoody Newbie
McMoody
Posted

My loved one has Celiac disease, and it has been left untreated for many years. I've been doing research on it and some research says that some celiacs may have symptoms of alexithymia, the state in which a person can't express, feel, or think about what they are feeling. Sometimes the way in which they express a feeling is through bodily function, such as a drastic decrease in body temperature if they are angry or sad. I am wondering if anyone has had a problem with this, and does a gluten free diet resolve it. I've read also that people with celiac who stick to a gluten free diet may become more sociable and active in their daily life. Since memory is linked with emotion and many people with Celiacs have memory problems it seems on fit that they may have emotional problems in some instances.

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

I am really replying to bump your post. ;)

Celiac Disease can cause many vitamin and mineral defiencies. Vitamin B12 deficiency can cause nuerological disturbances/damage.

  • 2 weeks later...
T.H. Community Regular
T.H.
Posted

Woah, I had not heard of alexithymia. How...interesting. I think I'm going to have to check this out. My daughter has HUGE issues with her emotions when she gets gluten. And yes, when she is off of gluten, she is much, much better.

For both she, my son, and myself, we are much more active, sociable, calm, happier - it's like we were sitting in the middle of depression and it just went away.

  • 2 weeks later...
Muffy Rookie
Muffy
Posted

That really is interesting.

My expereince is the same: gluten-free = calmer, more social, and happier, despite that I am pretty sure I still need more B12.

Woah, I had not heard of alexithymia. How...interesting. I think I'm going to have to check this out. My daughter has HUGE issues with her emotions when she gets gluten. And yes, when she is off of gluten, she is much, much better.

For both she, my son, and myself, we are much more active, sociable, calm, happier - it's like we were sitting in the middle of depression and it just went away.

  • 2 weeks later...
McMoody Newbie
McMoody
Posted
  • Author

I don't know if it's lack of B 12 or something else, but apparently there have been studies on GI issues.

Open Original Shared Link

Open Original Shared Link

Two instances of Crohn's that I know of one person feels like "death" when she consumes anything she's not supposed to, and the other started to become emotionally distant when symptoms appeared. I can only imagine how ongoing Celiac Sprue feels...

What I'm wondering is how long it takes to become more sociable, if ever? I'm sure memory problems don't help with sociability...I've heard that B12 deficiency can last for as long as a year for someone who just started their gluten free diet and is taking vitamins.

revenant Enthusiast
revenant
Posted

Oh wow... thankyou for posting this..

I seemed to show emotions when I thought they were appropriate but I never, ever felt, thought about, or expressed them... I never felt anything!! It's hard to believe. I believe that I like road trips so much because that's the only time I FELT. I got car-sick, and couldn't eat anything except fruit on long road trips. Those were the only times I would wake up and see beauty in life, and realize I was a person! A physical, emotional person!

I could not think "I am sad" or "I am happy". I could cry, but usually those tears were related to gluten-angst. Even then I wouldn't think "I am upset". I woulds smile but the only time I felt happiness was on those roadtrips. I didn't even know what I thought until I came out of my gluten stupor and could look back. I also had no opinions, like a robot. A doormat, I was often. It made me seem very generous because I never stopped anybody or fought back. I guess it helped me out some because I hear that I was made fun of a lot, but it never got through this wall of no emotions.

I'm so glad there is a name for this. It is a hard state to describe being in. I attribute it to my detached feeling throughout my childhood and early teenage years, I can't remember feeling. The experience of feeling things is still new and scary to me, and is truly a gift

I wonder if this is what Autism feels like, as well? I sure showed the most symptoms of being autistic during the worst of these states...

eatmeat4good Enthusiast
eatmeat4good
Posted

Revenant: You express yourself so well regarding the internal experience of gluten/Celiac and the sensations it caused you.

I had those feelings too.

I would go to therapy and say

"I think I've lost my soul."

I can't feel anything.

I would describe a deep sense of loss.

And hold my stomach.

They invariably commented on my solar plexus or something.

My god, it was Celiac.

Without gluten I don't feel any of these things.

Absence of occupation is not rest

A mind quite vacant

Is a mind distressed.

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

Celiac.com Sponsor (A8-M):


McMoody Newbie
McMoody
Posted
  • Author

Oh wow... thankyou for posting this..

I seemed to show emotions when I thought they were appropriate but I never, ever felt, thought about, or expressed them... I never felt anything!! It's hard to believe. I believe that I like road trips so much because that's the only time I FELT. I got car-sick, and couldn't eat anything except fruit on long road trips. Those were the only times I would wake up and see beauty in life, and realize I was a person! A physical, emotional person!

I could not think "I am sad" or "I am happy". I could cry, but usually those tears were related to gluten-angst. Even then I wouldn't think "I am upset". I woulds smile but the only time I felt happiness was on those roadtrips. I didn't even know what I thought until I came out of my gluten stupor and could look back. I also had no opinions, like a robot. A doormat, I was often. It made me seem very generous because I never stopped anybody or fought back. I guess it helped me out some because I hear that I was made fun of a lot, but it never got through this wall of no emotions.

I'm so glad there is a name for this. It is a hard state to describe being in. I attribute it to my detached feeling throughout my childhood and early teenage years, I can't remember feeling. The experience of feeling things is still new and scary to me, and is truly a gift

I wonder if this is what Autism feels like, as well? I sure showed the most symptoms of being autistic during the worst of these states...

When did you give up gluten? Have your symptoms improved? Are you able to understand your emotions better?

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 Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      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,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience

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


  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748
    denise.milillo
    Newest Member
    denise.milillo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      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
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      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
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      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
      Body dysmorphia experience

      By Scott Adams · Posted

      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.
×
×
  • 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.