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mental health struggles


sadiec123

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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.


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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

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    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
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