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

Are Those Sensitive To gluten-free Oats Also Sensitive To Especially Low Levels Of Gluten?


dilettantesteph

Recommended Posts

dilettantesteph Collaborator

Just curious because I am sensitive to gluten-free oats and seem to also be sensitive to small amounts of cross contamination. Other celiacs can eat things that make me sick. That might just be that I am early in the diet and not healed yet. I am wondering if there are subclasses of celiac disease out there. Someone else

wrote that she thought that people who were sensitive to gluten-free oats were more likely to test negative for celiac disease. Any comments?


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

I am very sensitive to tiny amounts of gluten but tolerate oats very well. Keep in mind that oats or not, there is a range of reactions/levels of sensitivity amoung those with celiac disease, with no or almost no symptoms on one end. But symptoms or not damage occurs. It is advised to wait until you heal to introduce oats and to do so slowly. For some. It can take a year or more to heal. I tried oats at a year or year and a half after going gluten-free. I was undiagnosed for 8 years and suspect I had alot of damage, in part, due to symptoms of malabsorbtion and nutrient deficiency and judging by how long it took me to get better. You also must use certified gluten-free oats as regular ones are cross-contaminated.

Helena Contributor

Interesting question. I was off wheat for a few years before even considering celiac....at the time when I was tested (blood tests), the only gluten I was getting would be from contaminated oats. I wasn't positive on all the tests, but the tTG and one of the antigliadin ones were positive.

After going gluten free for a short while, I did try gluten free oats.... I do seem to react to them.

As far as I know, I don't react to small amounts of cc. (At the same time, I do have GI issues sometimes <_< )

(the saga continues....I had a biopsy a week and a half ago because I was already having another endoscopic procedure done. The doctor asked me to eat gluten, and since I can't have wheat or rye (allergic), and barley tends to have may contain nut warnings (I'm allergic to nuts), I ate contaminated oats instead for a month in advance. If the test comes back positive, I think that it would be fairly definite that I can't have oats.)

happygirl Collaborator
That might just be that I am early in the diet and not healed yet.

How long have you been on the diet?

MaryJones2 Enthusiast

I've been gluten-free for four years and follow a very strict diet. I still don't tolerate oats and am painfully sensitive to CC. I don't think I am the norm though.

dilettantesteph Collaborator
How long have you been on the diet?

9 months

dilettantesteph Collaborator
I've been gluten-free for four years and follow a very strict diet. I still don't tolerate oats and am painfully sensitive to CC. I don't think I am the norm though.

I am like you and so is my son. I am thinking that there are different forms of celiac and he inherited mine.


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



Celiac.com Sponsor (A8-M):



dksart Apprentice

I am also highly sensitive, even the tiniest bit of cc gives me an almost immediate response. And it's not pretty.

darlindeb25 Collaborator

Some of us can't have oats, it's a known fact. There is a protein in oats called avenin, and some of us are intolerant of it. Oats bothered me long before I knew about gluten, but then they probably were comtaminated too. I can't eat any grains anymore and have no plans on trying oats again.

I do know I react to oats in lotions and soaps too.

ShayFL Enthusiast

Im off the grains as well. I always had issues with oats. I would eat them and then go into a "coma". I used to eat them late at night when I couldnt sleep.....but would wake with a "hangover". I stopped the oats before gluten. Rice seems to be an issue for me as well......

I only have a few tlb of amaranth flour a week for one recipe. I do fine with that. But not eating any grains.......

codetalker Contributor

I've tried two different brands of gluten-free oats on two different occasions and had reactions both times. I also react to very small amounts of gluten. Oats were my most common breakfast food before going gluten-free so the hope has always been that I could start eating them again, for variety if nothing else. That doesn't seem likely any more.

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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,408
    • Most Online (within 30 mins)
      7,748

    Angela VT
    Newest Member
    Angela VT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.