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

"gluten Free" Items That "got You"


NorthernElf

Recommended Posts

Larry Gessner Newbie

In researching this to learn more I have come across many, many complaints from the public with restaurants and coffee shops that cant seem to get it that cross contamination is a real problem. We live in a small town and I am sure that every other small town is dealing with trying to provide a gluten free food ( without doing the right things)

When it comes to the big companies it seems like they aren't doing their homework when creating the products.

Does the medical field have any way to rate a person's gluten intolerance as to severity? It sounds as if this all becomes trial and error after a person has been diagnosed.  I am interested in this because I would like all of my gluten intolerant friends to be able to live a normal life so I appreciate forums like this where people can share ideas. Perhaps the certification standards for gluten free facilities and the people in research and development need more training. 


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



Celiac.com Sponsor (A8-M):



  • Replies 102
  • Created
  • Last Reply
kareng Grand Master
7 hours ago, Larry Gessner said:

In researching this to learn more I have come across many, many complaints from the public with restaurants and coffee shops that cant seem to get it that cross contamination is a real problem. We live in a small town and I am sure that every other small town is dealing with trying to provide a gluten free food ( without doing the right things)

When it comes to the big companies it seems like they aren't doing their homework when creating the products.

Does the medical field have any way to rate a person's gluten intolerance as to severity? It sounds as if this all becomes trial and error after a person has been diagnosed.  I am interested in this because I would like all of my gluten intolerant friends to be able to live a normal life so I appreciate forums like this where people can share ideas. Perhaps the certification standards for gluten free facilities and the people in research and development need more training. 

non Celiac gluten sensitivity can vary, I suppose.  celiac disease is always " severe".  Less than 20 ppm has been established as the highest amount of accidental gluten that may be safe.  But  we aim for 0.  

 

I don't really understand your comments about " the certification standards for gluten free facilities".  If the facility is certified, they must meet the standards of the certifying entity.  Some are less than 10 ppm -so stricter than the law requires.  

Larry Gessner Newbie

One of the problems faced with any gluten free facility or any facility that is allergen free, is that employees that work there may not be aware that they are contaminating the products. this came to light during a conversation with an inspector who had relayed an incident where an allergen free facility was being inspected and during that inspection the inspector decided to check the trash in a packaging room. To the inspectors surprise there was a half eaten snickers bar in the trash. The entire facility was shut down and an investigation revealed that one of the employees was starving and snuck the candy bar into the packaging room. No one witnessed this, but to be safe the owner did a voluntary recall  of all the product that was packaged that day and a through cleaning of the facility had to be done. So my point is that even with the best measures in place someone still violated a stand fast rule with no regard for the people who would consume that product. These are the kind of things I put into our training so that employees know that if you violate a rule like that you might cause someone to become ill or die from them being exposed to an allergen. Everyone who works at a food facility is trained in allergen management. What I believe should be done is more examples of recalls shared and the consequences that the contamination caused. 

Just wearing gloves only separates the skin from the product. If a worker is sweating and they run their hand across their face, they deposit their sweat onto the glove and that possibly gets transferred to the product. We all do involuntary things like this until we are made aware of the problems they pose.

Since I work in a food industry, I have a concern when I read all of the problems associated with Celiac afflicted people experiencing gluten exposure from supposedly gluten free products.  This problem needs to be addressed on a larger scale.

I listened to a podcast the other night from a woman who is celiac and she will not purchase any pre-packaged gluten free mixes because she cant trust them. This problem is new to me and I am trying to understand where the root of the problem is so that if there is anything I can do to help, I make it part of what we do at our plant.

I realize I have a lot to learn and my goal is to find a solution that works for you and everyone who is afflicted by this.

 

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. - knitty kitty replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    2. - knitty kitty replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      ttg iga high (646 mg/dl) other results are normal

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    4. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,344
    • Most Online (within 30 mins)
      7,748

    GFBB95
    Newest Member
    GFBB95
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
×
×
  • 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.