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

Hidden Gluten


BNGed8

Recommended Posts

BNGed8 Explorer

Hey All,

So after being diagnosed a little over a month ago, I have my good and bad days (more bad). It seems somedays I barely have any muscle twitching or pain, but then other days it just takes over the whole day. I am thinking maybe since this is all new to me, maybe gluten is sneaking in somehow? I just recently stopped ordering out, even if it was gluten free as I have read a lot about cross contamination.

I was wondering if the people who have had Celiac for awhile can chime in & list a few things they found to be a sneaky source of gluten or if there are any articles they can share. I have been doing my fair share of research and read through almost any topic on this site I can find before I fall asleep. Also do you guys recommend going dairy free to start to see if that speeds up the healing (or eliminate anything else)?

I am going to start a food diary/journal as I have seen many people recommend, but didn't know if anyone knew of an APP for the iPhone that would make this easier? I know this is probably all still from my initial diagnosis, but want to try and heal as quickly as possible & will definitely help going forward.

As always thanks again for any input! 

Link to comment
Share on other sites
  • 1 month later...

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



Celiac.com Sponsor (A8-M):



GodsGal Community Regular
On 7/19/2021 at 11:38 AM, BNGed8 said:

Hey All,

So after being diagnosed a little over a month ago, I have my good and bad days (more bad). It seems somedays I barely have any muscle twitching or pain, but then other days it just takes over the whole day. I am thinking maybe since this is all new to me, maybe gluten is sneaking in somehow? I just recently stopped ordering out, even if it was gluten free as I have read a lot about cross contamination.

I was wondering if the people who have had Celiac for awhile can chime in & list a few things they found to be a sneaky source of gluten or if there are any articles they can share. I have been doing my fair share of research and read through almost any topic on this site I can find before I fall asleep. Also do you guys recommend going dairy free to start to see if that speeds up the healing (or eliminate anything else)?

I am going to start a food diary/journal as I have seen many people recommend, but didn't know if anyone knew of an APP for the iPhone that would make this easier? I know this is probably all still from my initial diagnosis, but want to try and heal as quickly as possible & will definitely help going forward.

As always thanks again for any input! 

Hi BNGed8,

Sorry for such a late response. I hope you are doing better. I would recommend going off dairy and oats for the time being.

Also, check your toothpaste, any cosmetics, hygiene products, pet food, soaps, shampoos, conditioners, and detergents. I discovered that my skin issues were a result of my celiac disease. 

Another thing to take into consideration is things that are labeled "gluten free" vs. "certified gluten free". In the USA items can be labeled gluten free if they contain less than 20 ppm of gluten. For many of us, 20 ppm is still too much. I look for gluten free certification marks. These products are tested to much lower levels. GFCO certifies products that are under 10 ppm. NCA certifies products that are under 5 ppm.

Another website that really helped me out is glutenfreewatchdog.org. A friend recommended the app "Find Me Gluten Free" for traveling. But, I have not really used it yet.

I hope this helps!

Link to comment
Share on other sites
Scott Adams Grand Master

This article should be helpful:

 

Link to comment
Share on other sites

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to hilly's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Extreme bloating even gluten-free

    2. - hilly posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Extreme bloating even gluten-free

    3. - Scott Adams replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Shaking/Tremors and Off Balance

    4. - cristiana replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Shaking/Tremors and Off Balance

    5. - Ginger38 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Shaking/Tremors and Off Balance


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      124,666
    • Most Online (within 30 mins)
      7,748

    Jteach
    Newest Member
    Jteach
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.7k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Some studies, with admittedly small sample sizes, show that about 50% of celiacs react to the protein casein in dairy the same way they do gluten. Can't find the NIH article I'm looking for but this one basically makes the point:   
    • hilly
      I was diagnosed in April. I have been very careful about being gluten-free, except for one accident in August where I ate candy with wheat. Despite being careful, I still experience extreme painful bloating almost daily. I'm so frustrated. I stopped eating gluten-free oats because I wondered if that was it. Now I am wondering if is dairy. I'm already tired of constantly wondering if I messed up.
    • Scott Adams
      In general I'm all for a formal diagnosis, except in cases where someone gets very sick when they eat gluten, and have already been on a gluten-free diet for a long time and don't plan to eat it again anyway. There seems to be more drawbacks that keep popping up with being formally diagnosed--at least here in the USA. I can testify that it's definitely harder to obtain life insurance, and if you can get it the premiums are quite a bit higher than if I did not have it, at least from my fairly recent experience when getting a new policy.  @Ginger38 you're very close to the end of your challenge, so let us know how it turns out.
    • cristiana
      Just to add something here... if any people in the UK are reading this, there can be definite advantages if you are formally diagnosed coeliac,  in terms of getting extra support from the NHS.  For free you get to see a nutritionist, additional vaccinations if deemed necessary, in some areas prescriptions for gluten free food; bone density scans, annual blood tests and reviews with a gastroenterologist, plus it has been my experience I've been able to see a gastroenterologist without a GP's re-referral when I've had complications.  That said, I don't know what impact there would be on health insurance; but I have found that when it comes to travel insurance I have had to declare it but it hasn't made any difference to the premium. However, I realise things can be very different in other parts of the world, and I am not sure where you are from, @Ginger38  
    • Ginger38
      Yes I figured out I couldn’t have gluten years ago when I was symptomatic and tested positive, but was misinformed and told I couldn’t have celiac but to go gluten free. I was already gluten free. I was never willing to go back on gluten and make myself so sick to have the biopsy especially when the biopsy isn’t 💯. But Now I have to have a procedure anyway and he told me he was doing the biopsy either way .. but I should consider the gluten challenge since I have never had the biopsy. He acted like it was super important to have this on paper.  I had no idea there were any possible negative drawbacks to having a formal diagnosis 🤦🏼‍♀️
×
×
  • Create New...