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.

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

    • Total Members
      132,807
    • Most Online (within 30 mins)
      7,748

    CeceNV
    Newest Member
    CeceNV
    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

    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
×
×
  • 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.