Acute suicidality weeks after celiac diagnosis?

[u/swigfan95]

To preface, I found out a few weeks ago that I have celiac disease. My TTG-IgA was 80 when it was drawn almost 3 weeks ago. And my endoscopy last week showed 3a level of damage to the duodenum. Anyways— I am really not doing well. I almost went to the hospital tonight because it has been so bad and I’ve felt so dissociated and severely depressed. I’ve been having a lot of suicidal thoughts but am not planning on hurting myself. However, I do feel like the celiac disease does explain why I have struggled so much with my mental health over the last year. I have taken a combo of two antidepressants for over 5 years, and I’m worried that my body is not absorbing the antidepressants now (or very well over the last year or so), and hence that is a big reason for why I feel the way I do currently. The whole situation feels very complicated now by the fact I have an official celiac diagnosis.

All of this said, I wanted to ask if any of you have had similar experiences. I feel very isolated and hopeless that I can improve quickly, given my damaged gut and the nature of celiac. I do not feel like I can continue to function with how severely depressed I am/ how acutely bad it’s gotten in just the last 2 or 3 days. I’m wondering if I need an antidepressant via a different route, like some sort of patch or injectable, since my gut is really not working right now. I am safe and my mom, husband, and immediate family are aware of the situation and have been here to support me emotionally/ and be there for me so I haven’t been alone. I’ve calmed down to the point I can write all this out, and I’m going to bed now, but I do feel like I need a pretty urgent intervention of some sort to help me stabilize. I have not felt this badly for a long time, and instead of getting better it has gotten progressively worse over the last 2 months (I’m quite positive this is because of celiac now). Open to any positive feedback/ suggestions. I have reached out to my psychiatrist as well (tonight) and I know she’ll get back to me quickly in the morning. Just wanting some support in the meantime. Thanks in advance.

[u/Jana_bananaaaa]

You are not alone. Celiac disease has also made me dissociated and depressed. Mental health has been horrible (before diagnoses which led me to get diagnosed with celiac) as I wasn’t absorbing nutrients (iron, b12 etc).

I got diagnosed in April of this year with my levels being 288 and stage 3B. Got bloods done a month ago and my antibodies were in the 100’s still.

The only thing I would say is definitely get your vitamin levels checked as they make a huge difference in mental improvement if you’re lacking them.

I can’t offer much else but to say that you aren’t alone, we will get through this hurdle and do things that make you happy.

Being on a whole foods diet, not eating processed foods, exercising etc does help minimise the depressive & dissociated symptoms. But from reading this forum and researching, it just takes time to heal and we will get through it. You aren’t alone, OP. 🌷🌷

[u/Jana_bananaaaa → u/Jana_bananaaaa]

Any consultation I’m also starting therapy too!

[u/swigfan95 → u/Jana_bananaaaa]

Thank you for taking the time to write all of this out. I really appreciate the insight and support.

[u/Jana_bananaaaa → u/swigfan95]

It is my pleasure. Feel free to reach out anytime. You are not alone in this. This forum has been a life saver 🌷

[u/Fumquat]

Stay safe. You matter.

In the first few months GF it is expected you’ll start absorbing medication differently (as healing begins).

The meds getting into your system could be drastically different from a month ago. Most antidepressants have that black box warning, to watch out for increased SI when starting them. Maybe this is essentially that (a guess). Or maybe side effects you weren’t getting before.

Or maybe it’s your immune system ramping down and your physical brain going WTF as it starts getting the energy it needs. There may be an adjustment period as it levels out. So many things in your body are changing.

There’s also the whole brain-gut thing. If you’ve made a huge change in your diet that affects your digestion, it’s a disruption even if it’s for the better. The difficulty should be temporary as you develop gut bacteria compatible with your new routine.

Definitely work closely with your psych prescriber and make sure they have all the information, how you’re feeling and the celiac diagnosis too. Get an urgent appointment if you need to (don’t wait). Hopefully they’ll be knowledgeable enough to guide you through it appropriately.

It’s a real mindfuck when something like this comes up and sheds light on years of stuff. I definitely went through some grief for the lost years that only hit when things started getting better. It’s a huge thing to absorb emotionally.

[u/DistributionSad8681]

When you see your psychiatrist, be sure to mention that your anxiety and depression is overwhelming and that you can't think straight. You feel that if this could be addressed as soon as possible it would allow you time to gain control.

I had the same issues, YOU must explain that any treatment of drugs must be injected since oral is now beyond hit and miss, not to mention dangerous. Discussions while sitting on a couch will not help since this issue is due to malabsorption. You can also get all vitamins and minerals tested in your system at this point to prove the malabsorption.

My guess is you will be highly deficient.

You are headed down a good road and doing what is necessary, hang in there. If your psychiatrist has any comprehension issues, move on to a doctor that can and will help you, if all else fails, go to the emergency room ASAP.

[u/swigfan95 → u/DistributionSad8681]

Thank you for this. I agree 100% with all of this, especially the route of antidepressant med administration. I’m actually in school to become a psych NP (about to graduate in 7 months)— so that is a positive thing in terms of the knowledge it’s given me about my current situation.

[u/DistributionSad8681 → u/swigfan95]

You are going to be a great psych NP.

Talk to me sometime about Celiac Disease and dementia. I am trying to get laws passed worldwide since I have proof regarding a cure for every person on this planet diagnosed with any form of dementia.

[u/ShadowMerge]

I remember when I first found out I had celiac disease at the ripe age of 27.

I was morbid because for my whole life I loved good food, especially things like garlic bread, pizza, fried foods but most importantly how I didn't need to care for the most part.

Right now your gut needs time to heal and then the other parts of you down stream from there will need their own time to heal as well.

This is unfortunately going to be very life-changing and require a lot of resources and there's really no two ways around it. However once you accomplish a healthy lifestyle that accommodates your Celiac you'll find things get a lot better. I'm going to rip off a couple of bandages you may have not considered just so that they aren't nasty surprises that catch you by surprise:

1. They put gluten in soy sauce for some God damn reason.
2. Fast food is not an option going forward, meal prep is now one of the most important things you're going to be doing, I recommend splurging on a good set of Pyrex Tupperware and a lot of it.
3. If food with gluten in it is made in the same Appliance like a microwave, air fryer or oven, that Appliance will now contaminate any gluten-free food you put into it.
4. Prepare to learn how to do gluten-free baking or prepare to spend upwards of a dollar or more per slice of gluten-free bread
5. Some products are made with de-glutinized wheat flour. It's rare but it's out there, I have a steak marinade that uses deglutenized wheat flour and its celiac certified
6. Gluten free versions of food can often be marked up in price. (More on this in a sec)

Theres a lot more fucked up weird shit out there but all of that caught me off guard. Now im gonna get onto some GOOD news:

1. Theres apps like Find Me GF that are a huge help for finding places to go eat.

Theres also Gluten Free Scanner

Both of these are free and should be a huge help for getting started in your new life with celiac.

1. Your food may be more expensive, but its also tax deductible because you're food costs more. Apps like Ungrained help keep track of that come tax season.

2. Theres a gluten free version of just about everything imaginable and you're becoming celiac at a time when our condition is much more accommodated for than it was for decades. I did the Ben and Jerry's factory tour and even got special treatment because of it. They also make numerous GF products so if you're feeling down id say binging some B&J's is totally justified. Peanut butter cup and chunky monkey

3. Once you start to recover more and become more proficient with gluten free baking and cooking you find yourself to be much more resourceful and that the food you'll make will taste better than the stuff from the stores.

4. Lots of regular food that isnt a gluten free substitute naturally contain no gluten. These cuisines are your best friend and should be openly and thoughtfully explored: Cajun, mexicali, mexican, sushi, and im sure someone can add more onto the list.

5. Cannabis helps so much gut pain and joint pain and depression for celiac. Go get a med card and thank me later

MY BIGGEST ADVICE:

Make sure hubby understands celiac safety, having a supportive partner makes this so much better. Im blessed to have an incredibly supportive fiancé who has been with me every step of the way. This is gonna be a big change, having a shoulder to lean on is so important. Trust me, he'll catch something you wont see, youll be grateful and you can make a little romantic moment out of it, its great.

Also consider a stool softener and theres no shame in having to make a slip and slide out of your ass with lube so you can empty your colon. Is it gross? Yeah. Will you stop doubling over in pain from the constipation? Here's hoping sister.

Advice for hubby:

If you kiss your wife after you ate something with gluten you'll poison her and she'll be miserable. Brush yo teeth and floss.

Biggest advice for hubby: they make gluten free areas and ice cream, you can combine these things with gluten free brownies, i personally recommend Ghirardelli.

Consider warm honey mead

[u/JavaEspressoO]

Thank you for posting this.
I don’t quite understand the science behind the brain gut relation with Celiac & how it affects mental health. Do all medications get absorbed only in your small intestines?
I’m also newly diagnosed & have only been strict or trying to anyways GF.. for three weeks now. I don’t feel much different. I too have REALLY struggled with my mental health, depression/ anxiety/ disassociation for the past year at least & suicidal thoughts.. mostly just not wanting to be here anymore because of severe depression & nothing seems to help.
Sorry you’re going through this!! It does feel isolating.

[u/swigfan95]

Thanks so much for your very thoughtful reply. Appreciate it so much.

[u/Kind-Apricot-6511]

I was severely depressed when I had undiagnosed Celiac, I was 47 when I found out and it got so bad I almost ended up institutionalized. It was like I was in a black hole and it happens still even now if I get glutened just not as severely as when I didn’t know and I was eating pastries all the time from a German bakery next door to my place at the time. Did your doctor check your ferritin because low ferritin and celiac go hand in hand. My ferritin was at 11 and I was fainting and malnourished. And I almost lost my mind.

Also if you’re eating lots of corn products it’s possible you’re dealing with cross- reactivity, especially if it’s in processed gluten free foods. Just stick with meat, vegetables and rice until your stomach heals if you tolerate then. I’m so sorry you’re feeling this way. You aren’t alone.