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. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Insomnia help

    2. - catnapt replied to xxnonamexx's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten Free Sugar or Starch known to increase gas?

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Insomnia help

    4. - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Insomnia help

    5. - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Insomnia help

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

    • Total Members
      133,464
    • Most Online (within 30 mins)
      7,748

    LynZ
    Newest Member
    LynZ
    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

    • cristiana
      PS... I help care for someone in their 90s, albeit part time, but have just been in hospital for a while with him and it has reminded me, even for someone in better physical shape, which I am now, thankfully, it can be very tough on one's health/sleep/mood.  I think what I am trying to say is you are going through a lot all at once, it is not surprising that you are not feeling 100 per cent. Even if we love our relative to bits, and they love us, they often can't understand that we too have lives, and need to keep our houses, families and jobs in running order. Something has to give, but it's often the carer!  When a loved one is resistant to change, it makes things even more exhausting.  Often it has taken a crisis for me to be able to introduce the help that has actually been needed for so long.  It sounds as if you are doing an amazing job but can you get any support from any carers associations or other groups where you live, which might help?  
    • catnapt
      hmm you got me curious as I have suspected that certain foods with sugar may be an issue for me so I googled this and came up with this: " Key Compounds Causing Reactions in Gluten-Free Foods: Fructans: Often found in foods that are gluten-free but high in fiber (e.g., inulin, chicory root), acting as a trigger for digestive issues similar to gluten. Fructose (Fructose Malabsorption): A sugar found in fruits, honey, and high-fructose corn syrup. Some individuals cannot properly absorb this sugar, leading to fermentation in the gut. Sugar Alcohols (Polyols): Examples include mannitol, sorbitol, and xylitol, commonly added to gluten-free, sugar-free products to maintain sweetness. Lactose: A disaccharide found in dairy that frequently causes issues in individuals with damaged gut linings, a common occurrence in celiac disease.  These reactions are often classified as dietary intolerances (such as fructan intolerance or fructose malabsorption) rather than allergies. They are commonly found in packaged "gluten-free" products like bars, cereals, and processed snacks. " hope this helps.    
    • cristiana
      Hi @EvieJean I was delighted to read @hjayne19's comments about A LIfe at Last as the book definitely helped me to understand how anxiety works.   You may be suffering from vitamin and mineral deficiencies which will can contribute to and even cause anxiety. Have you had any tests done?  If you have and 'normal' results , do take a second look at the levels.  Low normal, for instance, in iron and B12, may still be causing you anxiety, so you may need to consider supplementation.  (If you do this, best talk to your GP, particularly regarding iron, as it needs regular monitoring. - too much in the blood can be dangerous) When I was first diagnosed, my GP was happy when my ferritin levels were c. 11 n/gL (just on the cusp of our local normal lab readings) whereas a consultant I saw some months later for continuing mouth issues said, 'Far too low! and told me my levels should at least be at 40.   Another example is B12 -  in some countries a reading of 500 is considered the start of normal levels, in the UK normal range starts at 180 n/gL.  I feel much better when my B12 is at a higher level. If you are feeling depressed and generally stressed I'd also consider reading Dr Steve Llardi's book The Depression Cure which aims to address these issues with   physical exercise,  omega-3 fatty acids, natural sunlight exposure,  restorative sleep and social connectedness.  I have given this book to many people who found it helpful, and a relative of mine who is a doctor thinks it is fantastic.   The run up to my diagnosis and for some time afterwards I had terrible brain fog, insomnia and intrusive thoughts.  In time, with the supplementation, and also the above books, I did feel so much better.  I really hope that you can find some help with the above, and remember, try to keep your diet as gluten free as you can.  Also, please come back to us if you have any further questions. Cristiana    
    • hjayne19
      @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!  @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start! 
    • hjayne19
      Hi @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!      Hi @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!      Hi @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!      Hi @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!      @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start! 
×
×
  • 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.