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. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    2. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    3. - trents replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    4. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    5. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

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

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748

    sai4a
    Newest Member
    sai4a
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
×
×
  • 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.