Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Needed To Connect.


Mitchie K

Recommended Posts

Mitchie K Rookie

Hey there,

 

Just needed to connect with someone I guess. 

Diagnosed with Celiac disease almost 2 months ago but have battled it without the official diagnosis for 10 years. 

Today I ripped into a bag of Lays chips that had the supposed "seal" of approval and I sat down in the chair and slept the day away. Guess I react to "20 parts per million"  Running a slight fever now and dealing with the terrible other things that go along with glutened. 

I hate sleeping the "sleep of the wheat" as I like to call it. It's not restful sleep it feels like my body is shutting down. 

Honestly I just wanted to connect with other people like me. I feel so alone sometimes, nobody truly gets how awful this feels unless you live the life. 

And I get so upset. Sometimes I just want to go a restaurant, I want to be able to shave without getting 100's of cuts on my legs because of all the bumps, I want to sit down to a family dinner without questioning every ingredient. And I want to stay awake for an ENTIRE day, not part of it.

Just been a hard day, I'm sorry I don't mean for this to get anyone down, it's just so beyond frustrating, And who better to understand then all of you? 

 

Mitchie. 


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

You can vent anytime, we all have been there...I will make a suggestion ... you are very new to the gluten-free lifestyle.... your body hasn't got to a healing point but it will. While this process is an ongoing one I suggest trying to eat a very naked/clean diet to help the healing along....Try to stay away from the processed gluten-free stuff.. eat healthy fruits, veggies, meats .. If you need junk try popcorn or gluten-free pretzels...ice cream if not dairy intolerant.....

As you improve your body will let you know how sensitive you are... I also recommend Probiotics & digestive enzymes to help heal & digest....

Being gluten-free isn't convenient but it is the best disease to have no deadly drugs, no chemo, no radiation, just a food change....

Remember people go through a grieving process just like loosing a love one, this maybe what you are experiencing today...anger, denial, bargaining, sadness then comes healing , hope & a healthy life....hugs

Serielda Enthusiast

Eek the dreaded shared production lines in shared facilities. When I was new I got hit by that and it was horrible, but over time you will learn to pick those things carefully. As for this place it's an amazing site full of helpful people who "get" it and have been there. It was almost a year ago I came here freaking out asking hundreds of questions and working massive Google-fu to find help. Hang in there it does get better over time.

Mitchie K Rookie

Thank you so very much for responding, It's nice to be able to talk freely about these issues with people who truly understand. I had suspected that I had celiac disease for many years, but after being "officially" diagnosed by a Dr a few short months ago, I guess that just makes everything real. I think I am going through a bit of depression, maybe I always wondered in my own mind if i REALLY had it, or maybe that feeling so ill all the time was normal. Sounds pretty stupid when I think about it now. 

  I also now understand that my healing isn't just physical, but psychological as well. I'm definitely grieving my past life, Thank you all for the support. 

murphy203 Rookie

I struggle with believing I have it, too, despite all of the evidence to the contrary -- how weird are we??  LOL 

 

Vent away, and maybe consider finding a professional to talk to if you don't start feeling better emotionally, it can really help, in my experience.

Gemini Experienced

You are way too early into the healing process to label yourself as sensitive, so don't lose hope in that department.  If you ate the Lay's that are marked as gluten free and tested, it does not mean there are 20ppm's in the product.  It could be zero or it could be 5.  Lay's lists on their website which products are tested and then have a separate category for "no gluten containing ingredients".....which isn't the same thing as tested.  Potato chips also contain a lot of fat and that can be hard to digest in the beginning.  Have you tried digestive enzymes?  They can really make a difference in the beginning when you need help with digestion.

 

I know this is hard right now but it's probably because you aren't feeling well yet.  It gets so much easier the longer you do this and down the road, you will be able to eat a lot more foods without feeling sick.  That's the way it is for most of us so there is plenty of hope and good days to look forward to!  Hang in there!  :)

  • 2 weeks later...
StClair Apprentice

I just wanted to chime in about the fatigue and sleeping. At only three weeks gluten-free, it is a big deal for me too, so I wanted to extend cyber wishes that you feel better really soon. Best of luck to you.


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



Celiac.com Sponsor (A8-M):



Zebra007 Contributor

I think I felt much the same as yourself when I first went gluten-free, and although it is hard to believe you will definitely feel better over time, but it doesn't happen overnight, and some days I still mourn the fact that I cannot just stop at a bakery and buy a chocolate eclair or eat out with friends, and so there is definitely a sense of loss which you have to come to terms with, and as I said, it takes a bit of time, and then once your body starts to heal and you look and feel better you will wonder why you were so bothered about going gluten-free in the first place. 

CathyO Rookie

I've been gluten-free for about a year now. I feel better than I did a year ago. All my issues are not resolved, but I'm 60 ... So I have a lot of damage to overcome. And some things that may not resolved, but that's a different story.

I know that when I feel gluten, I bump up my intake of water. I want to flush my system as quickly as possible. I drink 4 ounces of aloe vera juice. And if I need to sleep, I sleep. Cellular repair happens when we sleep, so I think of it as restorative.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,701
    • Most Online (within 30 mins)
      7,748

    Bibs
    Newest Member
    Bibs
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • KennaH
      Interesting topic. I am gluten-free for approx 2 years. Age 60+ with various related health issues related to late diagnosis of celiac disease. Diagnosed osteoporosis and muscle loss. After walking or playing golf, I ate coconut yogurt with collagen protein and whey protein. Whey protein for many amino acids. Bloating and severe abdominal pain. Same with collagen protein powder even though gluten and lactose free. I am suspect exposure through other subtle ingredients. Research on both whey and collagen powders is my focus as I need the benefits of post-workout food items. 
    • Scott Adams
      Your situation is intriguing—while the biopsy ruled out celiac disease, the elevated gliadin IgA (along with gastritis from H. pylori) suggests your immune system is reacting to gluten, albeit differently than in classic celiac. High gliadin IgA can occur in non-celiac gluten sensitivity (NCGS), other autoimmune conditions, or even as part of gut inflammation from H. pylori. Since active gastritis can disrupt the intestinal barrier ("leaky gut"), gluten might trigger temporary immune reactions that could calm post-recovery. The fact that you tolerated gluten accidentally doesn’t necessarily rule out sensitivity; symptoms can be delayed or cumulative. To clarify, consider retesting gliadin IgA after fully treating the H. pylori and healing your gut (ask your doctor about timing). If levels normalize, you may cautiously reintroduce gluten. If they stay high, NCGS or another immune trigger (like cross-reactivity with other foods) could be at play. For now, focus on healing the gastritis—your gluten tolerance may improve as your gut does!
    • Scott Adams
      Your experience highlights a fascinating and often overlooked connection between gut health, mental health, and medication efficacy—something many in the celiac community encounter. When you removed gluten, your body likely began healing, which can dramatically alter nutrient absorption, inflammation levels, and even neurotransmitter production (like serotonin, which SSRIs target). This shift might explain why your SSRI seemed to "stop working"—your gut wasn’t processing the medication (or nutrients critical for mood regulation) the same way it did pre-diagnosis. Switching to an NDRI (which works on dopamine/norepinephrine instead of serotonin) may have bypassed this issue, hence your improvement. As for CBT, it’s absolutely worth exploring! While therapy won’t fix the biochemical side of celiac, it can be invaluable for managing the psychological toll of a major diet overhaul—grief over food restrictions, anxiety about cross-contamination, or the stress of recalibrating your body’s responses. Many celiac patients benefit from CBT to reframe unhelpful thought patterns and build resilience. You might also ask your doctor about checking key nutrient levels (B12, folate, vitamin D, zinc, etc.), as deficiencies post-celiac diagnosis can mimic or worsen mood symptoms. You’re not alone in this; the gut-brain axis is powerful, and your insight into these changes is a huge step toward balancing both.
    • Scott Adams
      While your negative tTG-IgA result suggests celiac disease is unlikely, the elevated total IgA (638) is notable and warrants further investigation. High IgA can occur in various conditions, including chronic infections, autoimmune disorders (like lupus or rheumatoid arthritis), or even liver disease—but it’s not typically linked directly to MS. That said, your brain MRI findings (white matter lesions at 44) and MS-like symptoms are concerning and should absolutely be prioritized with your neurologist. MS and celiac are distinct conditions, though both involve immune dysregulation; some studies hint at a slightly higher risk of autoimmune comorbidities in celiac patients, but no strong evidence ties IgA elevation specifically to MS. Given your symptoms, ruling out MS through neurological evaluation (possibly including a lumbar puncture or additional imaging) is wise. The IgA spike could also align with IBS or another inflammatory process, so collaborating with both your PCP and neurologist to explore all angles—perhaps even a rheumatology consult—might help piece this puzzle together. Wishing you clarity and answers after your upcoming appointment, and hoping you’re one step closer to effective management!
    • Scott Adams
      Let us know how it goes! Good luck!
×
×
  • Create New...