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

Help - Need Some Advise


aussiechick4jc

Recommended Posts

aussiechick4jc Rookie

Hi everyone,

My name is Karen and at the end of this year I will turn 50. I would really appreciate any input or advise anyone can give me.

I have finally found a doctor who is taking me and my medical issues seriously. Although this has been great, all the tests that I


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

The rule of thumb, once a Celiac, always a Celiac.

How were you tested for Celiac? You should not go gluten free until all Celiac testing is completed.

Did you ever have your thyroid checked?

Allergy testing?

Start keeping a food journal.

aussiechick4jc Rookie

My Celiac's test was bloods and so was the Sjogrens tests.

I have had thyroid checked - all good.

Had allergy testing - NOTHING. Tests where also bloods.

I have been Gluten free for neally a week now and have already noticed some improvement, which makes me very happy.

Am planning on keeping food diary as I'm sure I will get the Gluten free thing wrong in the initial stages. This may help me also if I have any other good issues.

Any additional advise would be much appreciated.

Thanks heaps

Karen

mommida Enthusiast

Why is sleeping a problem? Insomnia? Try taking some sublingual vitamin B12. Or is it painful to lie down?

If your symptoms don't start getting better, and it could take 2 years to feel perfect, you may have to get an endoscopy with biopsy. So keep looking for a doctor that listens to you.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

    2. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

    3. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    4. - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,096
    • Most Online (within 30 mins)
      7,748

    Kathy28
    Newest Member
    Kathy28
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Lkg5
      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
×
×
  • 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.