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

Eating gluten-free Oats

hez

Recommended Posts

hez Enthusiast
hez
Posted

Well, I thought I would let everyone know how my experiment is working. I ordered gluten-free oats from the company in Wyoming. I have had oatmel for breakfast and oatmeal cookies. I have been eating them for almost a month. No reaction.

I am NOT recommending you eat oats. Eating oats is a personal decision that each of us makes after doing the proper research. I only wanted to share my experience. Please keep in mind that others have tried gluten-free oats (I think they were from Canada) and did NOT have a good experience.

Hez

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

Celiac.com Sponsor (A8-M):


MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Just because you aren't having symptoms doesn't mean you aren't reacting.

hez Enthusiast
hez
Posted
  • Author

True. However, I usually am very sensitive. I will be doing bloodwork in the next month as well. I think my doc would also like to do another endo but we are in discussions about that.

Hez

KaitiUSA Enthusiast
KaitiUSA
Posted

Some people get intestinal damage from even pure and uncontaminated oats. You see, the protein in oats, avenin, is similar and some react to it so if you eat oats I would recommend getting a followup bloodtest or biopsy(whichever way you were diagnosed) to see if you are in fact doing damage.

hez Enthusiast
hez
Posted
  • Author

Kati,

You are so right! It was one of the many issues that came up when researching whether or not to try oats. Again, I am not advocating that everyone rush out and try oats. There are a ton of issues that you need to research and figure out with your doctor what is best.

Hez

chrissy Collaborator
chrissy
Posted

my kids don't seem to havae a problem with them either.

VydorScope Proficient
VydorScope
Posted

I think once truly gluten-free oats reach the public in decent quanties we will find out for sure how many ppl are bothered by oats. Ppl quote numbers from 10% to over 50% of ppl with celiac disease sposedly having a problem with oats... I tend to believe its closer to the 10% number and just an Oat Intolerence rahter then the protien being simular... the trouble is how do you know for sure if your one of them or not?

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

Celiac.com Sponsor (A8-M):


TinkerbellSwt Collaborator
TinkerbellSwt
Posted

I have a little bit of oats almost everyday. As I test the cereal for my son on my lips to see how hot it is. When I say a dab of cereal its almost miniscule. I dont know if its hurting me. I dont feel any different. But maybe overalll that is why I dont feel very good. I am trying to keep my son gluten free.. the only gluten he eats is his oatmeal in the morning. otherwise he strictly stays to the diet.. and he will until we can prove he is safe, which I dont put much into the docs.

So I am not doing him any favors am I... sheesh.. sometimes you really have to write (or type) things to see in black and white what you are doing wrong.

DingoGirl Enthusiast
DingoGirl
Posted
I think once truly gluten-free oats reach the public in decent quanties we will find out for sure how many ppl are bothered by oats. Ppl quote numbers from 10% to over 50% of ppl with celiac disease sposedly having a problem with oats... I tend to believe its closer to the 10% number and just an Oat Intolerence rahter then the protien being simular... the trouble is how do you know for sure if your one of them or not?

Guess I'm about to find out.....in a moment of wistfulness and missing my morning oatmeal too much, I ordered them....will let you know how it goes!

tarnalberry Community Regular
tarnalberry
Posted
I think once truly gluten-free oats reach the public in decent quanties we will find out for sure how many ppl are bothered by oats. Ppl quote numbers from 10% to over 50% of ppl with celiac disease sposedly having a problem with oats... I tend to believe its closer to the 10% number and just an Oat Intolerence rahter then the protien being simular... the trouble is how do you know for sure if your one of them or not?

The studies I've referred to give a number that's around 10% (a bit under), and suggest that it's not an oat intolerance, but its a similarity in protein due to elevated serum antibodies and celiac-characteristic intestinal damage found on biopsy. (This was a study specifically aimed at looking at the oat question.)

chrissy Collaborator
chrissy
Posted

so..........is there anyone on here that eats oats and has actually had their Ttg levels tested?

hez Enthusiast
hez
Posted
  • Author

I have an appt with my gi doc in several weeks. I will let you know how this goes. It will be interesting to see the numbers. I also will enjoy the appt. I know my gi doc would like to do another endo. I think I would just prefer the blood test.

Hez

KellyR Apprentice
KellyR
Posted

My daughter has been eating the oats for about 3 months and has had no reactions. She had bloodwork done 2 weeks ago and her numbers actually look much better than they had in previous blood tests. She has been gluten free for 4 years and has her blood tests once a year. This was the best one yet!!!

chrissy Collaborator
chrissy
Posted

what is the brand of the oats your daughter is eating?

KellyR Apprentice
KellyR
Posted
what is the brand of the oats your daughter is eating?
My daughter is eating McCanns oatmeat for breakfast at least 5 days a week and also I have been making her cookies alot with it.

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.