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

Frustrated, Upset, Concerned...


Ninja

Recommended Posts

Ninja Contributor

I've not been feeling good for the past couple of weeks and it's really starting to make me doubt whether I'm on the right path. It seemed to start with a trip I took a month ago when I was cc'd over and over. Well then I pet-sat and received glutteny kisses from 2 dogs as they were still chewing their treats. Then it was my conditioner, then it was the dog shampoo and eating with my hands directly after ( :blink: ) and then the grapes last night (no gluten, just high salicylates). I've been trying to go low sals to see if that helps at all given the array of foods that don't seem to agree with me. It's the only thing that makes sense because my reactions seem to follow no pattern (except that I react to higher sals foods) and sals are cumulative, I've learned. I'm having a really difficult time giving up fruit. If there's one food group I would never want to give up, it would be fruit.

I've been supplementing with vitamin D, B12 and a multivitamin, taking probiotics and digestive enzymes. I'm worried that I'm creating more issues by doing this. I should be feeling better not worse, right?! Some days are fantastic – like amazing... and then this happens. I know I need to give myself time to heal, but I'm worried that I'm doing more harm than good here. It's so frustrating. On top of that my mom is so concerned about all of this and how I'm feeling. It breaks my heart when she asks how I am feeling and I can't tell her that I'm happy, or that what we are doing is working... My dad (who is the gluten eater) went away for a week and I noticed an improvement with my symptoms. Maybe it was just coincidence? I know I could be more careful in the kitchen... :unsure:

I just want to feel better and I don't want to do the wrong things. I feel so clueless about it all.

Thanks for listening.

~Laura


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



Celiac.com Sponsor (A8-M):



GFreeMO Proficient

I had some apple cider over the weekend (very high in sals) and I feel glutened from it. If you have a problem with sals, this could be it. I am struggling with the same thing as you right now. Check out the sals thread in the DH forum. There is a lot of great info there.

BTW, your dog is adorable!!! Whats his/her name?

Ninja Contributor

I'm sorry you're feeling so crappy. :( I've been following some of those threads

GFreeMO Proficient

I'm sorry you're feeling so crappy. :( I've been following some of those threads – I don't think I would have figured it out otherwise!

The dog in the avatar is named Honey and the one in my profile picture is Ally – they are mother and daughter. :)

Sweet babies! I love their names.

Hopefully we will both be feeling good soon! Hang in there.

BTW, I can not go near grapes. They leave me feeling glutened from the sals. I find that I can tolerate red apples and strawberries and pears. LIke you said, they add up over time though so I try to limit it to one fruit a day and try to stay away from the high sals ones. (although, I drank liquid sals on sat. in the apple cider) and I can def. feel it.

Ninja Contributor

I learned my lesson – stay with known safe foods! I seem to be able to tolerate those, too (yay!). Bananas have definitely been a staple.

Very complicated. :huh:

Thanks – you too! :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,024
    • Most Online (within 30 mins)
      7,748

    Maus14
    Newest Member
    Maus14
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.