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. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

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

      nothing has changed

    3. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    4. - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

    5. - Scott Adams replied to Jmartes71's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Medications

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

    • Total Members
      133,189
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      I am not aware of an air detector for gluten, but Nima Partners sells a device that can detect gluten in minutes in a small sample of a meal or food that you eat. They are also a sponsor here for full disclosure: https://nimanow.com
×
×
  • 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.