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

1mpassioned

Recommended Posts

1mpassioned Newbie

I have been doing a lot of research and trial/error on finding the right products and food. It’s been 1 year since my diagnosis and it hasn’t been easy but definitely found my way. 

Anyway...the main reason I’m making this post is because I need to find a way to make companies aware of making gluten free products. I see too many of them are using shared equipment and it’s frustating!!!!! 

Thats like....giving something that is peanut free to a child but made in a facility where peanuts are all over the place. Why would they emphasize gluten free when it is not. I really wanna push companies to providing a separate room or building to manufacture their products. If they have the money, why not spend it knowing consumers such as myself would purchase it especially if it is gluten free?! 

Any ideas? 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

Do not buy from them? Buy the products and have them tested by a lab, then if positive file lawsuit? File complaints.

Not really much we can do, I trust a few things from companies like Beanitos says same facility but tested negative and I have never known a celiac who get sick from them. I have used a collagen powder same thing where it says facility and shared equipment, tested it, negative, and never gotten sick.
On the other hand I have bought coconut flakes, shared equipment that said gluten free on the front from Thrive Market. I got sick from it....tested positive on a nima...and I just threw it out...it had the warning that it was made on shared equipment...which acts as a legal disclaimer for them so not much I could do.
I have even gotten certified gluten free hemp protein.....and 8 out of 10 canisters over the past year or so have been contaminated and made me sick and tested positive...even lab tested by a 3rd party. The companies I complained to just said it happens with the crop and their is nothing the could do about. One even after demanding lot and date codes just started stone walling me after I gave them the info......I think they found contamination and just went dark.

If only I had my dream of island nation gluten and grain free where everything is screened and tested before being allowed on lol.
Anyway that is just the way this disease is and living with it, find the brand your trust and stick to them....and yeah there are some stupid things like birdseye etc. frozen veggies now using the same equipment for the gluten sauced veggies as the plain and just hosing them down.....why I stopped buying from them. But you even have slight chances with shelf produce at the grocery stores if across from a open air bakery -_-.

Gluten Free Watch Dog often follows up with companies for false gluten free claims and is doing multiple petetions with the FDA for stricter practices and gluten free labeling. I am a proud subscriber to her cause and find her reports great, I have sent in a few things myself over the years.

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,920
    • Most Online (within 30 mins)
      7,748

    Errebear
    Newest Member
    Errebear
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dawn R.
      Thank you for responding.  Yes I am.  Infact, sometimes I think it's getting worse. How do you deal with it? I do the best I can but it has taken away my independence.  
    • jadeceoliacuk
      Thank you Cristiana. I will check them out.
    • knitty kitty
      Hi, @Dawn R., I get gluten ataxia.  It's very disconcerting.   Are you still experiencing gluten ataxia symptoms eating a gluten free diet?  
    • knitty kitty
      @Jordan Carlson, Sorry to hear you're having a bumpy journey right now.  I've been there.  I thought I was never going to stop having rashes and dermatitis herpetiformis breakouts and hives, oh, my! I went on a low histamine Autoimmune Protocol Diet (AIP diet).  It gave my digestive system time to heal.  After I felt better, I could add things back into my diet without reactions.   In Celiac Disease, we make lots of histamine as part of the autoimmune response.  There's also histamine in certain types of food.  Lowering histamine levels will help you feel better.  Foods high in histamine are shellfish, crustaceans, fermented foods like pickles and sauerkraut, canned foods, processed meats and smoked meats like bacon and ham, and aged cheeses.  Grains and legumes can also be high in histamine, plus they contain hard to digest Lectins, so they go, too.  Cutting out corn made a big improvement.  Some Celiacs react to corn as though it were gluten.   Dairy can be problematic, so it goes.  Some Celiacs have lactose intolerance because their damaged villi cannot make Lactase, the enzyme that digests lactose, the carbohydrate in dairy, while some Celiacs react to Casein, the protein in dairy that resembles gluten.  Dairy is high in iodine, which makes dermatitis herpetiformis flare up badly.  Eggs are high in Iodine, too.  I even switched to pink Himalayan salt, instead of iodized salt.  Avoid processed gluten free facsimile foods like cookies and breads because they have lots of additives that can cause high histamine, like carrageenan and corn.   Yes, it's a lot.  Basically veggies and meat and some fruit.  But the AIP Paleo diet really does help heal the intestines.  My digestive tract felt like it was on vacation!   I'd throw meat and veggies in a crock pot and had a vacation from cooking, too.  Think easy to digest, simple meals.  You would feed a sickly kitten differently than an adult cat, so baby your tummy, too! Take your vitamins!  It's difficult to absorb nutrients from our food when everything is so inflamed.  Supplementing with essential vitamins helps our absorption while healing.  Niacin B3, the kind that flushes (nicotinic acid -not the same as nicotine in cigarettes, don't worry!) REALLY helps with the dermatitis herpetiformis flares.  Niacin and Thiamine make digestive enzymes so you can digest fats.  Add in healthy Omega Three fats, olive oil, flaxseed oil, avocado oil, coconut oil.  Vitamin D helps lower inflammation and regulates the immune system.  Thiamine helps mast cells not to release histamine at the slightest provocation.  Benfotiamine, a form of Thiamine B1, has been shown to promote intestinal healing.  Pyridoxine B6, Riboflavin B2, Vitamin C and Vitamin A help heal the digestive tract as well as the skin.  Our outside skin is continuous with our digestive tract.  When my outside skin is having breakouts and hives, I know my insides are unhappy, too.   Talk to your doctor and nutritionist about supplementing.  Blood tests are NOT accurate measurements of B vitamin deficiencies.  These tests measure what's in the bloodstream, not what is inside cells where vitamins are used.  Supplementing with essential vitamins and minerals made a big difference with me.  (My blog has more of my bumpy journey.) Let me know if you have more questions.  You can get through this!    
    • Jordan Carlson
      Hey there @knitty kitty! Thanks for checking in. Things are not really going as planned for myself unfortunately. As much as I feel better than I did while eating gluten, I still seem to be reacting to trace amounts of gluten in gluten free foods. I constantly break out in rashes or hives after eating. My dermatitis is constantly flaring up. I take every precaution possible to be as gluten free as I possibly can and have simplified my diet as much as I possibly can but still cant get past this point in my recovery. If this is the case, I believe it would be considered non-responsive Celiac Disease or Refractory Celiac Disease. The only time I have ate gluten purposely in the last year was for the 3 weeks leading up to my endoscopy for diagnosis. Aside from that, the last year has been a constant disappointing effort to be gluten free with the same result of getting stuck at this point. I have a appointment with my doctor next week to discuss some treatment options and what the next steps are in trying to get my body to push past this point.   I will keep you posted! 
×
×
  • Create New...