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

New to this diagnosis


Beagirl

Recommended Posts

Beagirl Newbie

Recently diagnosed with a problem with no cure is annoying and upsetting. Why does this happen? I have enough health problems to deal with and now this. I can live with reading labels and giving up things at I'm 68 years old. I can cook with gluten free everything and not give up good healthy food, look for gluten free restaurants, do all I'm told to do to manage the problem. So I don't know why I'm complaining since it is manageable.  


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum, @Beagirl!

What you are feeling is what we have all felt to one degree or another and we typically feel it more intensely when we already have a laundry list of health issues to work around. It's often the result of a sense of loss . . . of having to say goodbye to some good foods that we enjoy that may have been part of a shrinking list of things that are left that we still found pleasure in. And also for many it represents a social loss . . . not being able to accept dinner invitations from family and friends because you are unsure if they know how to cook gluten free . . . not being able to go out to just any restaurant with family and friends because their menu doesn't have gluten free offerings and if it it does, are they careful with regard to cross contamination issues?

cristiana Veteran
(edited)

I agree with Trents. And if you already have other health issues, it is just one other thing to have to think about.   

But on the matter of other health issues, depending on what they are, you may find that coming off gluten might help, which could be an unexpected bonus.  

Edited by cristiana
Scott Adams Grand Master
21 hours ago, Beagirl said:

Recently diagnosed with a problem with no cure is annoying and upsetting. Why does this happen? I have enough health problems to deal with and now this. I can live with reading labels and giving up things at I'm 68 years old. I can cook with gluten free everything and not give up good healthy food, look for gluten free restaurants, do all I'm told to do to manage the problem. So I don't know why I'm complaining since it is manageable.  

I hear you—it’s completely understandable to feel frustrated and overwhelmed, especially when you’re already managing so much. A new diagnosis, even if it’s "manageable," can still feel like one more burden on an already heavy load. It’s okay to complain, grieve, or just vent about it! Adjusting to dietary changes, reading labels, and finding safe restaurants takes effort, and it’s normal to mourn the simplicity of life before restrictions.

What’s encouraging is your resilience—you’re already thinking ahead about cooking gluten-free, finding alternatives, and taking control where you can. That’s huge! But it’s also valid to feel upset that this is something else to juggle. Chronic conditions can feel unfair, especially when they pile up. If it helps, many in the gluten-free community share that initial frustration but eventually find a rhythm (and even discover new favorite foods!).

Give yourself grace—it’s okay to feel both determined and annoyed. If support would help, consider connecting with a celiac support group (online or local) where others truly "get it." You’re doing great by adapting, but your feelings are just as important as the practical steps. Wishing you moments of ease—and maybe a fantastic gluten-free treat to sweeten the journey.

  • 2 weeks later...
Beagirl Newbie

I thank all who have replied to my initial comment. After letting it sink in for a few days and since eliminating gluten I have to say I do feel some better so all is not lost. I have investigated and there are lots of gluten free choices I can make without giving up really anything. At some point I will attempt to make my own gluten free bread when I have nothing else to do and see how that works. I got to thinking even though annoying it's not the end of the world, this problem is manageable, and it can be a learning curve for sure. Maybe this is just another part of the aging process so I better get used to it. Thank you all again. 

trents Grand Master

That's the spirit Beagirl!

Scott Adams Grand Master

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 


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



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,293
    • Most Online (within 30 mins)
      7,748

    Jschwind351
    Newest Member
    Jschwind351
    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

    • Wheatwacked
      I should point out that iodine is known to exasperate dermatitis herpetiformis blistering. It can take several months or even years of a strict gluten-free diet for the IgA-TG3 deposits to clear from the skin. After the skin completely heals, iodine may no longer trigger symptoms. "The circulating antibodies disappear and skin symptoms resolve as a result of gluten-free diet but the cutaneous anti-TG3 IgA deposits may persist for several years. " Missing Insight Into T and B Cell Responses in Dermatitis Herpetiformis
    • Wheatwacked
      I get my supplements f from Pipingrock.com close to 10 years now. Good quality, prices, ship  worldwide.  My 25(OH)D is at 93 ng/ml after 10 years taking. In 2019 it had still only gotten to 47 ng/ml.  Celiac Disease causes low D from malabsorption. High Potency Vitamin D3, 10,000 IU, 250 Quick Release Softgels 4.8 out of 5 stars, average rating value. Read 1662 Reviews. Sale price$10.70 Regular price$21.39 Basil Carcinoma.  Basil cell carcinoma is the result of failure of the immune system to recognize fauty DNA in cells. It is iodine that causes apoptosis, killing old and defective cells.  Not enough vitamin D to control the immune system and not enough iodine to do the job.  I had a sebaceous cyst, my seventh facial cyst, in 2014.  It started looking like a blackhead, but grew (Third eye blind).  All my 7 previous cysts had drained and healed normally.  When I drained this, there was a hairball the size of a BB and it would not heal.  This was one of many reasons I started Gluten Free.  I chose to not have it surgically removed, because I realized I had nutrient deficiencies that were causing slow healing.  By 2015 I realized it was Iodine deficiency and started eating seaweed, which helped my muscle tone, but not the healing.  The warnings on iodine from the gov't were so scary, I was afraid to use them.  Turns out it is all based on one study on rats in 1948. "The Wolff-Chaikoff Effect:   Crying Wolf?"   Last year I started taking 600 mcg a day and it is reversing my glaucoma and fixing muscle tone, hair nails and skin all returning to healthy,  Brain fog, which had improved dramatically on Gluten Free diet, my thinking got even clearer with the iodine. Finally the cyst my bellwether since 2014, began to heal.  So I had it biopsied  in July 2025, came back basal cell carcinoma.  With the Iodine (Piping Rock Liquid Iodine 12 drops a day 😃 = 600 mcg) is healing normally and I have a follow up in December.  By then it will have healed.  It is scabbing over like a normal wound.  In 1970 the US stopped using Iodine as a dough modifier.  The daily intake of Iodine dropped in the US 50% between 1970 and 1984.  Also, prescriptions for thyroxine have doubled.  150 mcg the RDA is not enough for anything more than preventing goiter.  Growing up in the sixties just 2 slices of bread had 200 micrograms of iodine, add a glass of milk and iodized salt and you're at 300 mcg a day.  The safe upper tolerable limit in the US is 1000 mcg.  In Japan it is 3000 mcg and the average Japanese, traditional diet, averages above 1000 mcg.  Remember when in the 80's our schools were loosing competitions to Japanese schools?  Iodine.  And Japan has 50% less breast cancer.  Nicer hair nails and skin.  It the US our kids are getting dumber, more flabby.  Fertility is dependant on enough iodine, also. 600 mcg.
    • numike
      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
×
×
  • Create New...