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

Is It Normal?

AfterAll

By AfterAll
in Coping with Celiac Disease

Recommended Posts

AfterAll Apprentice
AfterAll
Posted

to have a hard time adjusting to having Celiacs on an emotional level? I feel like I am almost in mourning sometimes. I never got to say goodbye to my favorite foods before cutting them out forever. Don't get me wrong... I am living my life, and most of the time I am fine, but sometimes I just don't want to be "different"... I want to be me, just a version of me that is more like everyone else.

I hate that my dietary needs and restrictions are constantly a topic of conversation among friends, family, and coworkers; that I need to think and plan ahead no matter where I go or what I do; and that sometimes if I don't plan ahead, I end up eating nothing and pretending that I am fine with it.

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Yes, it is normal. Grief or mourning is a normal reaction to the diagnosis. You will move through the stages. You seem to currently be at the anger stage. You will reach acceptance and recovery. It will take time.

GottaSki Mentor
GottaSki
Posted

Welcome AfterAll!

Yes, what you are feeling is completely natural. It is important to give yourself time to adjust. Time does makes it easier - time allows those around us to adjust, eventually your diet will not be the focus of conversation - the amount of time differs for everyone. While checking every label never ends it does become second nature and far less time consuming.

Hang in there - we've all gone thru it so feel free to come here to vent, ask questions and find some helpful hints to shorten the duration of transition frustration!

shadowicewolf Proficient
shadowicewolf
Posted

Very, but you'll find replacements or gluten free items that you can eat.

gfcolorado Newbie
gfcolorado
Posted

It's totally normal and it does get better. For me, the first year was really hard. I wanted to eat everything that I couldn't eat. And the first of everything is hard....first dinner party, first vacation, first Thanksgiving. But, it does get easier and I really feel fortunate that I can control my health through my diet. I have several friends with cancer and I look at what they have to go through. It also has made my life more interesting. I have tried restaurants that I never would have gone too and when I travel I get to see areas I would never have gone to because they have a #gluten-free restaurant.

Another important thing is to always have emergency food with you. And eat before you go to parties so you don't get sad when you can't eat anything...and then you are pleasantly surprised if you can.

It's an adjustment but it gets easier! Good luck!

flowerqueen Community Regular
flowerqueen
Posted

I agree, it's completely normal. Having said that, things do get better as you learn to adjust. I have adopted the 'attitude of gratitude' though, it makes me appreciate what I have got and not what I don't have. It's probably done me a favour, as I look very carefully at what I am eating now, and my diet has improved immensely - I didn't realise how much I'd let my diet 'slide' until I had to examine everything I ate. I eat food mainly prepared from scratch now and make healthful choices. Eleven months in and I still can't tolerate dairy and a lot of sugar but I'd much rather be healthy than indulgent, even if I have to remind myself of that fact ;) It will get better with time.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I am still doing anger and denial (though still gluten-free!!!) fairly regularly.

Seeing folks here who have got through it gives me hope though.

Good luck.

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

Celiac.com Sponsor (A8-M):


AfterAll Apprentice
AfterAll
Posted
  • Author

Thanks everyone! I wouldn't say that I am angry- anger is a strong word. I am just annoyed, haha.

I am also adjusting to people saying to me "My God, what DO YOU eat?"..."You mean you can't eat bread? I'd kill myself"... and the blank stare that ensues afterward when I am trying to contemplate what to say in response. :)

GottaSki Mentor
GottaSki
Posted

I am also adjusting to people saying to me "My God, what DO YOU eat?"..."You mean you can't eat bread? I'd kill myself"... and the blank stare that ensues afterward when I am trying to contemplate what to say in response. :)

The adjustment will come. Soon you'll your answers will roll off your tongue with a smile on your face.

"Well, I eat wonderful foods and have replaced bread quite nicely - I feel much better and know I can manage a serious health condition with the food I eat rather than with harsh medications - I feel lucky, not punished - there really is no reason to feel sorry for me, but I do appreciate your concern"

edited to add - yes I actually say things like this all the time - but it didn't come easy, naturally or quickly - it all took time.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,681
    • Most Online (within 30 mins)
      7,748
    Donna Ybarra
    Newest Member
    Donna Ybarra
    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
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.