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

mental health struggles


sadiec123

Recommended Posts

sadiec123 Newbie

I am 22 and was diagnosed with celiac back in May 2024. It was discovered after a year worth of excruciating pain and I was in the ER 3 times within a two week span from abdominal pain that presented as appendicitis or pancreatic issues. The physical pain and discomfort took months to heal after going gluten-free ( still going) however I feel so mentally & emotionally out of touch with everything. I know having other stressors in my life can add to that of course but I lost a lot of weight because I just don't want to eat anymore. I am angry all the time with food and feel physically awful with my diet. Did/does anyone else have this experience? I am really unsure of what to do or how to go about anything even though it's just a gluten-free diet that's supposed to fix it.


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



Celiac.com Sponsor (A8-M):



trents Grand Master
(edited)

Welcome to the forum, @sadiec123!

A couple of questions.

First, what is the biggest driver behind your food anger? Is it having to deny yourself foods that you used to enjoy or is it the social cost of needing to eat gluten free? By social cost, I mean do you feel left out or even resented by family/friends at social events or do you avoid social events because of the need to eat gluten free?

Second, is the weight loss welcome or has it put you in an unhealthy physical state?

Edited by trents
Wheatwacked Veteran
(edited)

I felt betrayed by the food I was eating,  I was angry at Agrobusiness.  Angry at myself because I blew off my son's doctor's recommendation in 1976 to go gluten free.  I was angry at the nutritional misinformation.  I actually became quite evangelistic about GFD.  My family banned me from mentioning wheat in their presence.

High dose 10,000 IU Vitamin D and low dose 5 mg Lithium Orotate kept me grounded.

It is not just a gluten free diet.  You also have to correct vitamin and mineral deficiencies.  Pretend like you moved to another country so you have to find new favorite foods.  There are built in deficiencies in the western diet that at times seems intentional.  Vitamin D, Choline, Iodine is deficient in the general diet.  Add in the deficiencies caused by the Celiac Disease malabsorption you suffered with unknowingly and the difficiency caused by avoiding foods.  Don;t forget the deficiencies caused by no longer eating processed gluten foods with their fortifiction.  Gluten free foods on not fortified.  You get what you eat.

Oh, anger at the people and doctors who said there was nothing wrong, when I knew there was. From as early as ten years old.  Guess I showed them.  They are getting sicker and I am not.  I invite them to my 130 birthday party.

Give yourself a break, you were told lies.  But let the anger turn into productivity.

To quote the Grateful Dead: "What a long strange trip it's been"

Your weight will stabilize at it's natural level.  I was kick sand in the face skinny as a kid.  150  pounds average through my 20's Then blew up to 185 from my 50's until I started GFD at 63.

You have the oppurtunity to avoid what I suffered.  Check out old TV shows like "Ozzy and Harriet", "Leave it to Beaver", "Donna Reed Show".

Edited by Wheatwacked
cristiana Veteran

Hiya @sadiec123s. 

I am not sure this will be terribly helpful, but in case, I'll share a couple of things here.

Rather than aggression, my mental health struggles were anxiety-related. I am sure there was a connection with my low B12 levels, and low iron, because once those were addressed I did start to feel better.  Have you been checked for deficiencies?

https://www.webmd.com/vitamins-and-supplements/what-to-know-about-vitamins-and-mental-health

Also, Dr Steve Llardi's book helped me a lot, too.  The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs.  It points out some lifestyle changes that can really help us to feel better:   physical exercise;  omega-3 fatty acids; natural sunlight exposure; restorative sleep; social connectedness:  meaningful, engaging activity.

Cristiana

 

  • 2 months later...
knitty kitty Grand Master
(edited)

How are you doing, @sadiec123?  Did you get through the holidays alright?   

Have you been checked for nutritional deficiencies?  Many newly diagnosed Celiacs  are low in Vitamin D and many of the B vitamins like thiamine.  Thiamin insufficiency can cause weight loss and loss of appetite (anorexia) as well as affect mood.   Benfotiamine has been shown to promote intestinal healing and improve mood.

Edited by knitty kitty
Typo correction

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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 Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

    2. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    3. - Mark Conway posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

    4. - islaPorty replied to Jillian83's topic in Coping with Celiac Disease
      8

      Celiac and dermatitis herpetiformis has taken Me from Me

    5. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,146
    • Most Online (within 30 mins)
      7,748

    Marsu
    Newest Member
    Marsu
    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 forum, @Mark Conway! Can you be more specific about the "coeliac" test your doctor did? There are more than one of them. What was the name of the test? Also, did he order a "total IGA" test? This is a test to check for IGA deficiency and should always be ordered along with the tests specifically designed to detect celiac disease. If you are IGA deficient, the IGA celiac blood antibody tests used to check for celiac disease per se will not be accurate. Also, if you have been cutting back on gluten before the tests, that will render them invalid. You must have be eating normal amounts of gluten for weeks/months before the blood draw to render valid test results.
    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • Mark Conway
      Hi there, I wonder if anyone can help. I've had stomach problems for years, pain in the tummy, lower back left and right side, different stools, diarrohea constipation etc, My GP says it's IBS. As I've got older the pain has become worse and constant. I also get ulcers on my tongue. I've had loads of tests done everytihng apart from an endoscopy I think. I had a test for Coeliac last July and the result was negative. My GP says it can't be coeliac because I'm not losing weight. He thinks it's stress or all in my head. I'm not stressed and I'm in pain all the time now. Sometimes it's unbearable and dark thoughts have entered my head. Could I have Coeliac even though I tested negative last year. I'm at my wits end, I eat healthily and cannot pinpoint which foods could cause this pain. Can anyone help? Thanks Mark wind
    • islaPorty
      First, I want to say thank you for sharing this with me. I hear you, and I believe you. The courage it took to write this down is immense, and I’m so sorry you’ve been carrying this alone. You are dealing with two life-altering challenges at once: a serious, complex medical condition, and an abusive, controlling partner who is actively harming your health and your spirit. It’s not just that he’s unsupportive—he is weaponizing your illness to torture you. Starving you, isolating you, mocking your diagnosis, and sabotaging your access to medical care is not just cruelty; it is dangerous, deliberate abuse. Your instinct is correct: the stress he is creating is absolutely preventing your body from healing. Celiac and autoimmune conditions are profoundly sensitive to stress, and he has created a living hell designed to keep you sick, dependent, and broken. That smirk you described—that is the look of someone who enjoys having power over your suffering. Please know this: you do not deserve this. Not any of it. You deserve to eat. You deserve safe, clean food and water. You deserve medical care and supplements that help you function. You deserve peace. You deserve to heal. The woman from the food pantry is not a random accident. She is a lifeline. Her help, and the community she’s connecting you to, is real. It is okay to feel overwhelmed by kindness when you’ve been starved of it for so long. But you do deserve it. Let that be a sign that there is a world outside your house that operates on compassion, not control. Right now, your physical safety and access to nutrition are the most urgent priorities. The food pantry is a critical resource. Is there any way you can speak privately with the woman helping you? You don’t have to share everything at once, but letting her know your situation at home is extremely unsafe, and that your partner restricts your food, could help her support you in a more targeted way. She may have connections to local domestic violence services.
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
×
×
  • 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.