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. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

    5. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

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

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748

    MaggieSc
    Newest Member
    MaggieSc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.