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

Mood Swings?


kaayrah

Recommended Posts

kaayrah Newbie

Hi all.

First I wanted to say Thank you to everyone on my first post with how supportive and welcoming everyone was! Made things a bit easier.

But now new question... I have been having ridiculous mood swings going gluten free (was diagnosed in May) to the point of crying for no reason then been super happy. Has anyone else gone through this after going gluten-free? I am really struggling with day to day tasks and being around people. Th's feeling of being an inconvenience to everyone has been difficult. I do have an amazingly supportive friend group but I still feel like it's an annoyance to them. Not only that but it's taking a toll on my relationship with stress that didn't used to be there even though my boyfriend has been super supportive and even researched a ton to understand the diagnosis and what I am going through physically.. I really don't know where to turn to deal with how much my mood swings are affecting my everyday life. Oh and on top of that the ever present brain fog has taken a wicked toll on me as well. Any suggestions on what to do to help settle this all out?

I apologize if I am venting on a topic that has been discussed before I'm just feeling super lost on this one.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



brooklyngal Rookie

Hi all.

First I wanted to say Thank you to everyone on my first post with how supportive and welcoming everyone was! Made things a bit easier.

But now new question... I have been having ridiculous mood swings going gluten free (was diagnosed in May) to the point of crying for no reason then been super happy. Has anyone else gone through this after going gluten-free? I am really struggling with day to day tasks and being around people. Th's feeling of being an inconvenience to everyone has been difficult. I do have an amazingly supportive friend group but I still feel like it's an annoyance to them. Not only that but it's taking a toll on my relationship with stress that didn't used to be there even though my boyfriend has been super supportive and even researched a ton to understand the diagnosis and what I am going through physically.. I really don't know where to turn to deal with how much my mood swings are affecting my everyday life. Oh and on top of that the ever present brain fog has taken a wicked toll on me as well. Any suggestions on what to do to help settle this all out?

I apologize if I am venting on a topic that has been discussed before I'm just feeling super lost on this one.

Hi kaayrah,

Two things I've had trouble with that might affect mood are: secret sources of gluten, and vitamin deficiencies. 

 

As far as the secret glutening, it sucks but you really have to double-check everything you eat. There are lots of packaged and frozen foods that say "GLUTEN FREE" in big letters right on the front, and then "May contain wheat" in the fine print on the back. And I've been glutened more than once by restaurants that claim a dish is "gluten free," usually by cross-contamination – although once I was straight-up given regular bread instead of gluten-free bread! I've also been glutened by mouthwash and lip balm. If you're not sure about something, you can search the forums here or call the manufacturer.

 

You also may not be getting enough vitamins, both because of the damage done before you were diagnosed, and because lots of gluten-free foods aren't enriched. A daily multivitamin might help. You should also get your vitamin levels checked by your doctor.

 

And adjusting to a gluten-free social life is difficult. It helps to always have simple snacks on hand (string cheese, fruit, even potato chips) and ask people to do things that aren't food-focused.

 

Hope some of this is helpful!

LauraTX Rising Star

Hi Kaayrah.  One thing to point out is that not everything is caused by the consumption of gluten.  Just the stress of having a diagnosis of an odd disease that others don't understand and affects every facet of your life can trigger depressed symptoms and such. I highly recommend going to talk to someone like a therapist.  Even if it is for a short period, it can be great help to get through hard times.

kaayrah Newbie

Thanks for the responses!

I have been trying to be super careful grocery shopping with reading labels and trying to buy mostly fruits and veggies rather than pre packed food. The only major slip I've had myself was buying gelato that said gluten free but on further reading the label it said it was made in a facility that processed wheat and barely products as well (lucky for my boyfriend who got to eat both containers because I didn't want to risk a reaction). I have been calling manufacturers on a regular basis while out shopping. Which has helped a lot in making choices.

 

I didn't even think of the vitamin thing. My Dr is on holidays right now but I do have an appointment with him on the 22nd so I will have to ask about that for sure.

As for talking to a therapist I have been looking for one here that isn't a 3+ month wait to get into. I had an amazing lady I used to see when I lived in Edmonton AB but now live in a smaller town in Saskatchewan and there is a major shortage of available therapists etc. I am really lucky that my boyfriend has been researching everything he can about the disease (almost more than I have been) and is really supportive in making sure there are options for me to have when we are at a friends or going on road trips.

 

The restaurant one is the most frustrating as very few people seem to understand it needs to be treated the same as a peanut or seafood allergy not just the "fad diet". I have had amazing experiences at Moxie's Grill thought with management taking the time to come double check if it is for celiac's or just preference. The server brought me my salad with crutons and dressing that was definitely not safe even though I specified it needed to be gluten-free. Less than a minute after it got sent back to the kitchen the manager came out and apologized (turns out he is a celiac as well) and made sure my meal was covered and he apparently went back and made my salad himself to ensure it was safe. It was probably the most "normal" at a restaurant I have felt even though it was special treatment.

 

I guess I am struggling more with adjusting to this than I thought I was and it all hit me at once. I really am grateful for places like this that I know there are others who are able to give advice and not feel like I'm the odd one out.

 

Thanks again! :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      1

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    3. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    4. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant

    5. - klmgarland posted a topic in Dermatitis Herpetiformis
      1

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748

    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
    • klmgarland
      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis.  I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t.  Who knew that if I fed my dear invalid cousin a hamburger and used the same hand to eat a couple of her gluten free fries that I was cross contaminating myself.  Who knew that if my husband makes a sandwich and leaves crumbs on the counter which I sweep away with a dish towel then wash my hands and dry them on this same dish towel and then touch my lips that I potentially cross contaminated myself.  Who knew that just wiping off the table crumbs could still leave gluten on the table that has to be washed off with soap and water.  Who knew when my husband heats a tortilla by draping it over the toaster that gluten residue is possibly left behind.   Who knew that if my husband eats a gluten product and I kiss him on the lips that I was cross contaminating myself.  Who knew that if I should walk into the bakery to get my gluten free cupcake if they have been mixing up a batch of flour batter and there could be flour particles in the air I could inhale and contaminate myself.  Who knew I needed to be careful that my grand baby shouldn’t put there fingers in my mouth because they just ate a biscuit and I was cross contaminating myself.   Eating gluten free is the easy part.  But know one tells me how to live in the real world filled with gluten contamination just waiting to happen!   There I feel better getting all that off my chest but I feel isolated and alone in this journey. I sleep with a back scratcher, stand in my freezing cold pool, glob on tons of triamcinolone for the rash on my knees, back, bottom, elbows and ankles.  I use bottles of Scalpicine for the extensive rash on my scalp.  All my make up, medications, soaps, shampoos, cleaners, detergents are all gluten free.  But I still have a rash and I fear I will gouge and claw holes in my head and body before I can’t figure out how I am exposing myself to gluten.  I don’t even want to leave the house anymore.  I never eat any food or drink offered me at anyone’s home ever.  I can drink wine and eat potato chips!  Hurray for me, I finally agreed to try Dapsone even though I read it’s hard on your body but if I don’t get some relief am going to have a nervous breakdown from lack of sleep and high anxiety. Can anyone point me in the right direction? Thank you,  Helpless but Hopeful
×
×
  • 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.