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

Am I Insane? (Trying To Explain Gluten Sensitivity And My Psychological Symptoms To Non-Sufferers)


Kates77

Recommended Posts

Kates77 Rookie

The majority of my symptoms are psychological: depression, stress, anxiety, mood swings, cravings, obsessive thinking about food, binge eating etc.

 

I also experience digestive issues like diarrhea, constipation, malabsorption, bloating, excess gas and other physical issues like horrible acne, fatigue and weak joints.

 

But my most severe issues (depression/mood swings/food obsession and cravings) are psychological. This makes it extremely difficult for me, when I am trying to explain the connection between gluten sensitivity and my brain, to non-sufferers that just cannot comprehend how diet can impact the way we think.

 

If I was a non-sufferer, I would have trouble believing it as well! But the dramatic change that my whole personality underwent when I went gluten free was just so life changing that I am so convinced in the power of food as something that can both heal and harm. I guess I'm just in need of a bit of support from other people that also get psychological symptoms, and how a gluten free diet has dramatically improved their mental health.

 

Everyone seems to think I'm absolutely insane, and it is just so exhausting trying to explain all of my issues and the link to gluten, without sounding like a nut job.

 

I am currently eating gluten because I am going to get my blood test and endoscopy next Friday, and I find myself praying that I have Celiac Disease, because at least then the connection between my symptoms and gluten would be more concrete. I can't believe that I find myself hoping that my intestines are damaged just so that people will believe me!

 

I would appreciate any comments/advice! x


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



Celiac.com Sponsor (A8-M):



MIgrainePosterChild Newbie

The majority of my symptoms are psychological: depression, stress, anxiety, mood swings, cravings, obsessive thinking about food, binge eating etc.

 

I also experience digestive issues like diarrhea, constipation, malabsorption, bloating, excess gas and other physical issues like horrible acne, fatigue and weak joints.

 

But my most severe issues (depression/mood swings/food obsession and cravings) are psychological. This makes it extremely difficult for me, when I am trying to explain the connection between gluten sensitivity and my brain, to non-sufferers that just cannot comprehend how diet can impact the way we think.

 

If I was a non-sufferer, I would have trouble believing it as well! But the dramatic change that my whole personality underwent when I went gluten free was just so life changing that I am so convinced in the power of food as something that can both heal and harm. I guess I'm just in need of a bit of support from other people that also get psychological symptoms, and how a gluten free diet has dramatically improved their mental health.

 

Everyone seems to think I'm absolutely insane, and it is just so exhausting trying to explain all of my issues and the link to gluten, without sounding like a nut job.

 

I am currently eating gluten because I am going to get my blood test and endoscopy next Friday, and I find myself praying that I have Celiac Disease, because at least then the connection between my symptoms and gluten would be more concrete. I can't believe that I find myself hoping that my intestines are damaged just so that people will believe me!

 

I would appreciate any comments/advice! x

I can completely relate to this. When I try to explain to my doctor that I am certain I have malabsorption, she looks at me like I'm crazy. I try to explain my feelings of derpersonalization and she recommends I should see a psychiatrist, but I know what I am experiencing is tied in with my constipation, flatulence, acid reflux, etc and the most likely cause is Gluten. I don't think you're crazy and I hope you figure it all out. I am now looking into possibly IV therapy through a natural health clinic because they did list malabsorption, depression, anxiety, fatigue and chronic stress in the list of treatable afflictions.  

tarnalberry Community Regular

I wouldn't go into it trying to explain to anyone but your doctor(s).  You can say "it keeps me from thinking clearly", but I won't go into a lot more detail than that.  They won't understand, or relate.  And it doesn't really matter if they do, as long as they respect your choice to be gluten free.

Kates77 Rookie

I can completely relate to this. When I try to explain to my doctor that I am certain I have malabsorption, she looks at me like I'm crazy. I try to explain my feelings of derpersonalization and she recommends I should see a psychiatrist, but I know what I am experiencing is tied in with my constipation, flatulence, acid reflux, etc and the most likely cause is Gluten. I don't think you're crazy and I hope you figure it all out. I am now looking into possibly IV therapy through a natural health clinic because they did list malabsorption, depression, anxiety, fatigue and chronic stress in the list of treatable afflictions.  

I have so many of the same symptoms as you! All of my friends want me to see a psychiatrist and my uncle thinks that I have an eating disorder because I didn't want to eat anything at a restaurant we went to when I had been gluten-free for a week (I tried explaining to him that I would EVENTUALLY eat out, but I was brand new to being Gluten-Free and just wanted to be super safe for the first little while). I really hope you work it all out with the IV therapy. Good luck :)

frieze Community Regular

Katie...for your own edification/interest/support; you may want to read about Abram Hoffer.  Interesting fellow, a psychiatrist from Canada, since died, but was in the Orthomolecular psychiatry movement.

The majority of my symptoms are psychological: depression, stress, anxiety, mood swings, cravings, obsessive thinking about food, binge eating etc.

 

I also experience digestive issues like diarrhea, constipation, malabsorption, bloating, excess gas and other physical issues like horrible acne, fatigue and weak joints.

 

But my most severe issues (depression/mood swings/food obsession and cravings) are psychological. This makes it extremely difficult for me, when I am trying to explain the connection between gluten sensitivity and my brain, to non-sufferers that just cannot comprehend how diet can impact the way we think.

 

If I was a non-sufferer, I would have trouble believing it as well! But the dramatic change that my whole personality underwent when I went gluten free was just so life changing that I am so convinced in the power of food as something that can both heal and harm. I guess I'm just in need of a bit of support from other people that also get psychological symptoms, and how a gluten free diet has dramatically improved their mental health.

 

Everyone seems to think I'm absolutely insane, and it is just so exhausting trying to explain all of my issues and the link to gluten, without sounding like a nut job.

 

I am currently eating gluten because I am going to get my blood test and endoscopy next Friday, and I find myself praying that I have Celiac Disease, because at least then the connection between my symptoms and gluten would be more concrete. I can't believe that I find myself hoping that my intestines are damaged just so that people will believe me!

 

I would appreciate any comments/advice! x

MIgrainePosterChild Newbie

I have so many of the same symptoms as you! All of my friends want me to see a psychiatrist and my uncle thinks that I have an eating disorder because I didn't want to eat anything at a restaurant we went to when I had been gluten-free for a week (I tried explaining to him that I would EVENTUALLY eat out, but I was brand new to being Gluten-Free and just wanted to be super safe for the first little while). I really hope you work it all out with the IV therapy. Good luck :)

Thank you! I'll let you know if it helps. I am so tired of phantom symptoms of illness.

Takala Enthusiast

You don't owe anyone else an explanation of what is causing you to feel a certain way, because the average person *might* be able to throw around a bit of psychobabble talking points from watching Oprah, Dr. Oz, and a few other cable teevee personalities, or reading trashy popular magazines online, but they have not taken college level courses in psychology or had any medical training.  Malnutrition, and therefore shortages of vitamins and minerals, causes problems with food cravings....  this is not rocket science. This is a physical reaction.  Well-nourished people don't feel the need to binge - eat, because they are not starving to death on the inside. 


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

It's no different (im simplifying greatly here) than the link between hypothyroidism and depression symptoms that miraculously disappear when the thyroid is treated. This is a documented effect...perhaps using it as an example would help explain?

For some Celiacs, I swear it's like our bodies convert healthy food to junk food. Why, how...I don't know but that's the effect. I assume its the malabsorption from intestinal damage, plus the obvious gluten rejection/AI response (which we all express differently).

MIgrainePosterChild Newbie

I know that everyone is different so this might not work for you, but I have just started taking a digestive enzyme pill after each meal and I have been feeling a lot better. 

sisterlynr Explorer

I agree that you should just not talk about it to people that you know don't understand.  Just tell them that you feel better, no details needed.

 

Most restaurants have an allergy menu which includes gluten allergy.  I just ask the server for their allergy menu and order from it.   

 

Good luck!

EmiPark210 Contributor

Here are some articles to back you up: 

 

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

I had to go back on gluten because of my biopsy next Friday after being off for three weeks and the psychological effects are amazing. Off gluten my ADD seemed to disappear and the insecurities I've been working through in therapy for four years now didn't seem so bad. But don't expect everything to get 100% better immediately. Some people heal more quickly than others. 

 

Good luck!

taynichaf Contributor

You sound exactly like me!...same situation! I am also paying that I am a celiac, because I know there has to be a reason for the person I've changed into..

Simona19 Collaborator

I would like to add one more thing: Why almost every autistic child is put on gluten and casein free diet? It appears that they do better on it. There is some controversy about it, but I met one woman not to long ago in the Whole food whose naturopath suggested this diet for her son and she was willing to try it. Even you know one popular celebrity whose son has autism and currently is on gluten and casein free diet. It's Jenny McCarthy. I heard her once on Helen to talk about it. She is also on the same diet with her son and she stated that it changed her son's life. Maybe you can explain your situation with the help of this fact?

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

      Am I nuts?

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

      My journey is it gluten or fiber?

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

      Anti-endomysial Antibody (EMA) Testing

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

      Just diagnosed today

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

      Am I nuts?

  • 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
      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
      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
      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
      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
      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.