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mental health struggles

sadiec123

By sadiec123
in Coping with Celiac Disease

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sadiec123 Newbie
sadiec123
Posted

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
trents
Posted
(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
Wheatwacked
Posted
(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
cristiana
Posted

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
knitty kitty
Posted
(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
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi! I have been diagnosed with celiacs and hashimotos for about 1.5 years. I have been on a gluten-free diet since then, and was on a strictly AIP diet for about 6 months a while back. I'm now pregnant, making food eliminations really hard. However, even with cutting out gluten and cross-reactive foods like corn, dairy, oats and yeast, I'm still having flare ups and I cannot pinpoint the foods (some weeks I am fine, others not so much). My symptoms are less digestive and more dizziness, brain fog, and a general feeling of being "sick." Can anyone relate? Does anyone have guidance? I feel really stuck and frustrated. 
    • trents
      Worsening oral health with celiac

      By trents · Posted

      The form of the magnesium is important. Go for one that has high absorbability. Most of us opt for magnesium glycinate. Mag citrate is also good. Don't settle for the oxide forms. They aren't absorbed well and tend to have a laxative effect 'cause they just draw water into the colon a' la Milk of Magnesia. Costco is a good place to shop for things like that. Also, good bone and dental health involves vitamin D. Are you taking a dedicated D3 supplement? Have you had your D levels checked? In many ways, vitamin D is turning out to be a master vitamin of human metabolism and celiacs are often low on this one. What was the numerical score on your IGA along with the reference range? I can probably tell you whether it was TTG-IGA by the magnitude of the score. The only other likely option besides TTG-IGA would be Total IGA which usually has scores that range in the hundreds.  I do think it important for you to get a follow-up endoscopy/biopsy to check for healing of the villi. If that isn't happening like it should, you still are not absorbing nutrients well and that could easily explain your dental issues.
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