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

Cross-Contamination Is A Real Thing and is Slowly Killing Me


jenford244

Recommended Posts

jenford244 Rookie

Who else deals with this? Please tell me I'm not alone. I've had to completely eliminate going out to eat PERIOD, having any food or drinks, coffees, teas, snacks, that aren't bought at a store with my own hands, and aren't super processed and ambiguous - which leaves only fruits and vegetables, lean meats, to be safe.
Nothing that can even be remotely related or near wheat (corn, oats) can enter my body. I don't eat red meat or have dairy while my intestines are healing from years of damage. It's gotten pretty bad (blood).

For example, I just had to throw out a protein powder that I loved, that claimed to be free of gluten, and other food items that cause people allergies. (I don't have a gluten allergy, I have celiac disease.) Because said item was processed in a factory with wheat, but nowhere on the container did it state this. Which infuriated me. If you want to know it is the brand OWYN. I would advise avoiding it, and all protein powders for that matter. I wouldn't have even known if it wasn't for a comment through amazon.com, then started paying attention to how it made me feel. Now no protein powders are safe. Have had to go through this all on my own.

Has anyone else had to deal with these difficulties, any of them, and if so, what did you do to help cope with this? What kinds of emotions and thoughts ran through your head? What did you do to help remind yourself? I've had quite a few emotional breakdowns over this. And please don't tell me that it's something else and I need to see a specialist, because I have. 

What foods do you like to eat? What foods do you like to cook, what are some general tips and tricks, things you've learned that you can/wouldn't mind to send my way? 

Now I have to stick to just fruits, vegetables, and lean meats forever now, and this whole process has just made me feel like I'm in a bad dream that I can't wake up from. It doesn't even feel like reality. I turned 26 this year and if it wasn't for 23andMe (last Christmas) I wouldn't even know I had Celiac. But since doing a vast diet change my constipation has stopped, I'm having regular bowel movements, though worrysome still -- my general mental health has felt a lot better and my physical health too. I don't feel sick all the time like I used to and didn't know what was going on. 

Any advice or wisdom, general knowledge any of you may have is seriously appreciated.

Thank you.

(sorry mods for repost, thought it was better here!)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



OWYN Newbie
8 hours ago, jenford244 said:

Who else deals with this? Please tell me I'm not alone. I've had to completely eliminate going out to eat PERIOD, having any food or drinks, coffees, teas, snacks, that aren't bought at a store with my own hands, and aren't super processed and ambiguous - which leaves only fruits and vegetables, lean meats, to be safe.
Nothing that can even be remotely related or near wheat (corn, oats) can enter my body. I don't eat red meat or have dairy while my intestines are healing from years of damage. It's gotten pretty bad (blood).

For example, I just had to throw out a protein powder that I loved, that claimed to be free of gluten, and other food items that cause people allergies. (I don't have a gluten allergy, I have celiac disease.) Because said item was processed in a factory with wheat, but nowhere on the container did it state this. Which infuriated me. If you want to know it is the brand OWYN. I would advise avoiding it, and all protein powders for that matter. I wouldn't have even known if it wasn't for a comment through amazon.com, then started paying attention to how it made me feel. Now no protein powders are safe. Have had to go through this all on my own.

Has anyone else had to deal with these difficulties, any of them, and if so, what did you do to help cope with this? What kinds of emotions and thoughts ran through your head? What did you do to help remind yourself? I've had quite a few emotional breakdowns over this. And please don't tell me that it's something else and I need to see a specialist, because I have. 

What foods do you like to eat? What foods do you like to cook, what are some general tips and tricks, things you've learned that you can/wouldn't mind to send my way? 

Now I have to stick to just fruits, vegetables, and lean meats forever now, and this whole process has just made me feel like I'm in a bad dream that I can't wake up from. It doesn't even feel like reality. I turned 26 this year and if it wasn't for 23andMe (last Christmas) I wouldn't even know I had Celiac. But since doing a vast diet change my constipation has stopped, I'm having regular bowel movements, though worrysome still -- my general mental health has felt a lot better and my physical health too. I don't feel sick all the time like I used to and didn't know what was going on. 

Any advice or wisdom, general knowledge any of you may have is seriously appreciated.

Thank you.

(sorry mods for repost, thought it was better here!)

Julia here from OWYN. We can assure you that OWYN is not processed in a factory with wheat. Our brand was created because our founders and their family members have life threatening food allergies - this is personal for us. We work with industry leaders to establish the highest standards in 3rd party food testing. We test independent ingredients before production, and we test our finished goods after production. You can check out our website to learn more about our testing results and our PPM requirement for each test: https://liveowyn.com/allergen-tested-protein-shakes/ Please let us know if you have any questions. 

Link to comment
Share on other sites
OWYN Newbie

Julia here from OWYN. We can assure you that OWYN is not processed in a factory with wheat. Our brand was created because our founders and their family members have life threatening food allergies - this is personal for us. We work with industry leaders to establish the highest standards in 3rd party food testing. We test independent ingredients before production, and we test our finished goods after production. You can check out our website to learn more about our testing results and our PPM requirement for each test: https://liveowyn.com/allergen-tested-protein-shakes/ Please let us know if you have any questions. 

Link to comment
Share on other sites
trents Grand Master
9 hours ago, jenford244 said:

For example, I just had to throw out a protein powder that I loved, that claimed to be free of gluten, and other food items that cause people allergies. (I don't have a gluten allergy, I have celiac disease.) Because said item was processed in a factory with wheat, but nowhere on the container did it state this. Which infuriated me. If you want to know it is the brand OWYN. I would advise avoiding it, and all protein powders for that matter. I wouldn't have even known if it wasn't for a comment through amazon.com, then started paying attention to how it made me feel. Now no protein powders are safe. Have had to go through this all on my own.

jenford244, do you have documentation that this OWYN protein powder is manufactured in a facility that also processes wheat? Julia from OWYN says otherwise. Since you are so sensitive to so many foods, perhaps your reaction is to another ingredient, even perhaps to something else that you consumed around the same time.

Link to comment
Share on other sites
knitty kitty Grand Master

@OWYN and @jenford244

There are a LOT of carbohydrates and proteins in that pea protein product.

There is not enough Thiamine in it to properly convert the amount of carbohydrates and proteins  into energy.  

Increasing carbohydrate intake demands more Thiamine.

 

The thiamine status of adult humans depends on carbohydrate intake

https://pubmed.ncbi.nlm.nih.gov/11582856/

"An increase of dietary carbohydrate intake from 55% to 65% and 75%, respectively, of total caloric intake for four days per period at isocaloric conditions causes a decrease of plasma and urine levels of thiamine without affecting enzyme activities."

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

"In the US and elsewhere, daily requirements for thiamine and other vitamins and minerals were established in the late 1930s and early 1940s. Research and governmental reports indicated that 1 mg of thiamine daily was adequate to stave off the symptoms of overt TD in an adult [22]. Some reports, however, argued that while 1 mg may be sufficient to prevent frank deficiency, 1.5–2 mg of thiamine for a 70 kg/154 lb adult per day was more optimal and provided health benefits beyond simply the prevention of deficiency [4,23]. These reports notwithstanding, 1.1–1.2 mg of thiamine per day was adopted as the RDA and has remained unchanged for 80 years."

 

There is not enough Thiamine in that pea protein to deal with the carbohydrate load and the protein load.  By continuing to consume it, there has developed a thiamine insufficiency or deficiency.  

Feeling like you have consumed gluten Symptoms are very similar to symptoms of Thiamine deficiency.  

We can deplete our thiamine levels in as little as seven days.  Using this pea protein for a longer than a week would induce thiamine deficiency, especially if you are not getting thiamine from red meat or other foods.  Veggies don't have much Thiamine.  Fruits don't have much Thiamine.  The best source is red meat, liver, and pork.

Manufacturers frequently use Thiamine mononitrate to enrich their products.  Thiamine mononitrate is not a bioavailable form.  Our bodies have trouble using thiamine mononitrate.  Thiamine mononitrate is used because it has a long shelf life.  It doesn't react with anything so it stays stable.  Our bodies cannot use it either.

Thiamine in the form of thiamine hydrochloride is better.  Allithiamine and Benfotiamine supplements are much better and easier for our bodies to use. 

Choose your own supplements.  Don't let manufacturers decide what cheap nonfunctional  vitamins you put into your body.  

 

Link to comment
Share on other sites
CinderCyn Newbie

I have found that I have gluten type reaction issues from most of the "gums" that are added as thickeners to EVERYTHING. Examples; locust bean gum, cellulose gum, guar gum, xanthan gum and carrageenan. These are actually in a lot of processed foods, from pudding to salad dressing to deli meat....and protein shakes.

Xanthan Gum is the worst for me causing pain, nausea, etc. I thought I was getting a lot of cross contamination until I discovered it was xanthan gum causing the problems.

Maybe this information can help.

 

Link to comment
Share on other sites
trents Grand Master
2 hours ago, CinderCyn said:

I have found that I have gluten type reaction issues from most of the "gums" that are added as thickeners to EVERYTHING. Examples; locust bean gum, cellulose gum, guar gum, xanthan gum and carrageenan. These are actually in a lot of processed foods, from pudding to salad dressing to deli meat....and protein shakes.

Xanthan Gum is the worst for me causing pain, nausea, etc. I thought I was getting a lot of cross contamination until I discovered it was xanthan gum causing the problems.

Maybe this information can help.

 

Yes, this is not uncommon.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Anon76t87 Rookie

Everything I eat gets stuck. I have eliminated every morsel of wheat products in my home. I am holistic from childhood. My sink counter is more sterile than a bottle of grain alchohol.  I made a fruit smoothie and that triggered horrible results. I have made an herbal concoction of garlic, onions, fresh mint, golden seal root(can not be taken extensively) ginger, vinegar w/mother, lemons, and more that relieves the agitation until my next meal, 6 bottles of water. Everytime I eat I bloat. I have dropped from 145 to 133( I can not afford this loss) and am somehow maintaining it. I believe I may have a parasite?. Last night I went to bed comfortable (I thought) around 9pm. I was awakened @11ish only to not be able to go back to sleep the entire night. I am exhausted. Grass fed free roam everything washed and double washed. I was only diagnosed 6mths ago with the help of DNA testing and found it is genetically induced plus the possibility of Prediabeties(I am told this was kept at bay because of my healthy lifestyle). I have gone my entire life soon to be 60 in sept.,  believing this was natural because of misdiagnosis. I am/was athletic and what I believed was the best shape of my life. To the point of modeling for SI Swimsuit. When I look back at my photos of my Youth I can now see the malnutrition.  When someone praises You for being thin. They do not (nor did I for that matter) understand  that the grass is always greener on the other side. From nuts to white rice I am having extreme difficulty and discomfort. I weighed 138lbs when I went to bed. When I awakened. I was 133. Why? I am at a loss for words now and trying to believe. It could be worse. 

Link to comment
Share on other sites
CinderCyn Newbie
9 minutes ago, Mj. said:

Everything I eat gets stuck. I have eliminated every morsel of wheat products in my home. I am holistic from childhood. My sink counter is more sterile than a bottle of grain alchohol.  I made a fruit smoothie and that triggered horrible results. I have made an herbal concoction of garlic, onions, fresh mint, golden seal root(can not be taken extensively) ginger, vinegar w/mother, lemons, and more that relieves the agitation until my next meal, 6 bottles of water. Everytime I eat I bloat. I have dropped from 145 to 133( I can not afford this loss) and am somehow maintaining it. I believe I may have a parasite?. Last night I went to bed comfortable (I thought) around 9pm. I was awakened @11ish only to not be able to go back to sleep the entire night. I am exhausted. Grass fed free roam everything washed and double washed. I was only diagnosed 6mths ago with the help of DNA testing and found it is genetically induced plus the possibility of Prediabeties(I am told this was kept at bay because of my healthy lifestyle). I have gone my entire life soon to be 60 in sept.,  believing this was natural because of misdiagnosis. I am/was athletic and what I believed was the best shape of my life. To the point of modeling for SI Swimsuit. When I look back at my photos of my Youth I can now see the malnutrition.  When someone praises You for being thin. They do not (nor did I for that matter) understand  that the grass is always greener on the other side. From nuts to white rice I am having extreme difficulty and discomfort. I weighed 138lbs when I went to bed. When I awakened. I was 133. Why? I am at a loss for words now and trying to believe. It could be worse. 

Mj....I am so sorry you are having these problems. It is so hard wanting answers. Five years ago I found out that I had Mast Cell Activation Syndrome (MCAS) https://www.mastattack.org...... treating for that has CHANGED MY LIFE. Leftovers are my worst trigger....so only fresh food for me. 

Link to comment
Share on other sites
Anon76t87 Rookie
35 minutes ago, CinderCyn said:

Mj....I am so sorry you are having these problems. It is so hard wanting answers. Five years ago I found out that I had Mast Cell Activation Syndrome (MCAS) https://www.mastattack.org...... treating for that has CHANGED MY LIFE. Leftovers are my worst trigger....so only fresh food for me. 

CinderCyn,. Thank You for responding.  I needed to vent. Thank You for the MCAS artical. It must be tough for You as well. 

I apologize for my self absorbed answer. It wasn't my forum to do so. This is all new to me and the stress and frustration levels are making me unhinged at the moment. I hate to say this, but I am content in knowing I am not alone. Thank You again. 

Link to comment
Share on other sites
Anon76t87 Rookie

Jenford244:❣

Me too! I can not eat out anywhere. Socializing in restaurants seems almost impossible. I pray that somehow things become a little easier for You. None of us deserve this ailment. Dealing with it is to say at the least, completely and utterly mind blowingly frustrating. I can only hope as we move forward, You/we find ways to cope with this a little better. I am happy there is a forum for us to vent. Most just say "ah You have a reaction to wheat products". I want to reply no 🤡 look it up lol. Meditation helps a little. Talking about it does as well. Whatever You do. Do not keep Your emotions bottled up. Choose to tell those You know who have Your back/best interest at heart. Blessings to You and Your household 🙏

Link to comment
Share on other sites
jenford244 Rookie
On 8/11/2022 at 3:14 PM, CinderCyn said:

I have found that I have gluten type reaction issues from most of the "gums" that are added as thickeners to EVERYTHING. Examples; locust bean gum, cellulose gum, guar gum, xanthan gum and carrageenan. These are actually in a lot of processed foods, from pudding to salad dressing to deli meat....and protein shakes.

Xanthan Gum is the worst for me causing pain, nausea, etc. I thought I was getting a lot of cross contamination until I discovered it was xanthan gum causing the problems.

Maybe this information can help.

 

that makes so much sense!!

On 8/12/2022 at 3:56 PM, Mj. said:

Jenford244:❣

Me too! I can not eat out anywhere. Socializing in restaurants seems almost impossible. I pray that somehow things become a little easier for You. None of us deserve this ailment. Dealing with it is to say at the least, completely and utterly mind blowingly frustrating. I can only hope as we move forward, You/we find ways to cope with this a little better. I am happy there is a forum for us to vent. Most just say "ah You have a reaction to wheat products". I want to reply no 🤡 look it up lol. Meditation helps a little. Talking about it does as well. Whatever You do. Do not keep Your emotions bottled up. Choose to tell those You know who have Your back/best interest at heart. Blessings to You and Your household 🙏

thank you so much! Yoga has really helped me personally

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,142
    • Most Online (within 30 mins)
      7,748

    Suzi.Bartel
    Newest Member
    Suzi.Bartel
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      For what it's worth, at the time of my celiac disease diagnosis I was also diagnosed with H. Pylori and treated for it with antibiotics. The throat swelling sounds like an allergy that may not be associated with celiac disease--if you can recall the foods you ate before this reaction it might help you track down the culprit, but if you can't it might make sense for you to keep a food diary so that you can figure this out. Also, if going through a gluten challenge to get a celiac disease diagnosis will allow you to get gluten-free food at half price, it would be worth it, but just be sure that you don't also have a wheat allergy that is causing your throat to swell, as you could have both an allergy and celiac disease. PS - You should bring up the throat swelling to your doctor, as they may want to have you do allergy tests.
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • BadHobit
      H. Pylori is negative. However, I was treated twice for this infection. All of my unknown complaints started with pneumonia and were reinforced with Covid-19. I currently have thyroid disease. However, my thyroid problem receded with synthetic hormones and was almost solved. My body has been on alert for the last year. Especially skin, intestines, eyes.
    • BadHobit
      It happened like you said, the dermatologist prescribed the creams. He told me to go to gastroenterology and left the door open for immunology. I'm going to immunology because my throat swelled up last yesterday at night for no reason and suddenly I've developed asthma. And I don't have that. I gave up gluten so quickly that I couldn't even start. I am going to have a gene test. In my country, gluten-free food is costly but with a coeliac diagnosis, we can buy it for half the price. That's why I always eat potatoes, bananas and rice.
    • Eldene
      I think I have found a partial answer, too long to quote here. Polyphagia, depression, stress, loss of nutrients due to damaged villi. Tx all.
×
×
  • Create New...