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

What Can I Trust?


afitgirl

Recommended Posts

afitgirl Rookie

This is a huge issue for me.   I don't know what is okay and what isn't?     I'm not worried about whole foods but how do I know what products are okay?  

I was excited to discover loads of stuff labeled gluten free and although I cried at the store, I at least brought home stuff to try.  But now I read that nothing is safe?   How do I really know?   Calling seems insane for every single product and then I'm just trusting the person on the other end who doesn't care about  me at all???

 

How does this work?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I just read the ingredients. I feel great and my antibodies are low. You can make yourself crazy playing the " what if " games. Most Celiacs do what I do. They aren't on this forum posting. Most People on the forum are either new to Celiac or having some issues, celiac or not.

afitgirl Rookie

Do low antibodies mean you aren't eating gluten? Or "too much gluten" to do harm? Does it mean your intestines are healed or "healed enough."

GF Lover Rising Star

Ok girl.   You have to stop this.  If it says gluten free, you have to assume it is safe.  If you have a problem with that particular food, don't eat it again.  Try to avoid processed foods as they are not healthy, celiac or not.  Avoid eating out until you have a good grip on the diet and can maneuver the restaurant scene successfully if at all.   You do not need to worry about your antibodies unless at a checkup they are high.  You will heal without eating gluten.  You will keep yourself nuts and stressed out if you don't calm down and eat correctly.  

 

You will be fine!  start your diet and go live your life.  If, by chance, another health issue pops up, deal with that and then go live life again.  This is not hard to do if you just accept your diet change and realize you will continue to heal and feel better.  A diagnosis of Celiac is a GOOD thing!  You have found an issue and are now dealing with it to avoid possible problems in the future.  Some of us went 15 - 20 years undiagnosed and were on our way to the grave at the time of diagnosis.  

 

Cheer up, eat well and be happy.

 

Colleen

mbrookes Community Regular

GFlover is  soooo right. I am not a case of celiac, I am a person who has celiac. You can drive yourself nuts with the "what if's" in life. Trust gluten free labels. If you have a problem with that, you may have another sensitivity. Most celiacs are fine with anything under 20ppm, which is the legal limit for marking something gluten free. Relax.

BlessedMommy Rising Star

Yep, I agree with the above.

 

I take all the precautions that I can with the areas that I can, because there are areas that I can't control. I'm not standing there in the factory watching them make the stuff. I'm not going to make all my guests change their clothes or wash their hands as soon as they come in my house. I'm not going to stay away from the county fair because of the cow and horse feed with wheat in it. I'm not going to worry about the 1 PPM that my certified gluten-free food might have in it. (munching Udi's granola as I speak) 

 

Now if people need to take precautions in these areas that I mentioned due to extreme sensitivities, that's fine. I'm not belittling that. I have known celiacs/NCGI who can't walk around at the county fair with the grain in the air. But personally that doesn't affect me. You will probably soon figure out your sensitivity level, if something bothers you, don't eat it again. Keeping a food journal can help. 

 

Short of eating a diet of only whole foods and foods from dedicated facilities, there is only so much control that you can have and some degree of uncertainty is part of life as a celiac. 

 

Most celiacs can tolerate up to 20 PPM, which gives you some margin of error for those things that you can't control. But since deliberate contamination will raise you above that level fast, you have to do whatever you can. In other words, if they bring you a hamburger and you take it off the bun, you're probably way above 20 PPM.

IrishHeart Veteran

. But since deliberate contamination will raise you above that level fast, you have to do whatever you can. In other words, if they bring you a hamburger and you take it off the bun, you're probably way above 20 PPM.

 

??

 

But no celiac should ever eat a hamburger removed from a bun.


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

 Most People on the forum are either new to Celiac or having some issues, celiac or not.

 

Or they are   fine and want to stick around and help  :D

BlessedMommy Rising Star

??

 

But no celiac should ever eat a hamburger removed from a bun.

Yes, that's the point I was trying to make, is that you shouldn't do that. Sorry for the confusion.

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.