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

A Big Thank You To This Community, Plus Wheat Starch Rant


Rebekka

Recommended Posts

Rebekka Newbie

I just thought I´d thank this wonderful community! During the two years since my celiac disease diagnosis, I´ve used this site as my number one support system along with my family. Even before diagnosis, this site was a HUGE help and lead me to ask my doctor for a blood test. This community is the best, with so many helpful and knowledgeable people!

 

In the last couple of months, my health has improved a lot. I really struggled up until a year, year and a half  after going gluten free. Part of this was great damage after going so many years undiagnosed (I´m twenty and have been sick more than half my life) Another thing that probably contributed a great deal to my slow healing, was that I would once in a while eat bread that contained "gluten free" wheat starch!! 

I live in Norway, and here in scandinavia, wheat starch is found in A LOT of gluten free processed foods and flours. People seem to think "a little bit won´t hurt you", and that wheat starch is perfectly ok to include in a celiac´s diet. CRAZY! I used to think that too, until I researched the topic. I think it´s a complete disaster and a tragedy that the manufacturers in scandinavia are pushing products that are, in my opinion, bad for any celiac!

 

My health has improved greatly since removing "gluten-free" wheat starch, chocolate (I can`t find a single chocolate bar in Norway that I won´t react to, the laws for labeling allergens is rubbish) and any product that might not be safe. Heck, as stated above, I can´t even trust gluten free labeled items to actually be gluten free. I believe that a 20 ppm "safe gluten" limit is way too high and could cause damage. I´m now realizing that I need to stay away from processed foods all together! 

 

To end it on the positive note it started, thank you all so much for being here and always being so helpful and kind! 


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

That is a real shame that their labelling laws are so loose over there!  :( I can imagine how frustrating that must be.

 

I am glad that you are feeling better now. I hope it continues.  :)

w8in4dave Community Regular

Yes I think just eating whole meat , good fresh veggies and a fresh starch is good!! I am trying to stick to that!! It is hard with fast food and all but It is do able! Processed Pfftttt!

GottaSki Mentor

This is nice to hear...especially the parts about you improving!

 

Thanks for sharing...it is nice to have folks pop back in to remind others that healing happens...it just takes time.

 

Feel free to join in anytime...the more the merrier around here :)

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. - Scott Adams commented on Scott Adams's article in Product Labeling Regulations
      2

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    2. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      nothing has changed

    3. - Scott Adams replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Is it gluten?

    4. - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

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

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748

    Bea71
    Newest Member
    Bea71
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.