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. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    2. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    3. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    4. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    5. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

      Food and environmental allergies involve IgE antibodies. IgE antibodies provoke histamine release from mast cells. Celiac disease is not always visible to the naked eye during endoscopy. Much of the damage is microscopic and patchy or out of reach of the scope. Did they take any biopsies of your small intestine for a pathologist to examine? Were...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    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

    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
×
×
  • 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.