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

Is It Really Possible To Avoid Trace Amounts?


rutland

Recommended Posts

rutland Enthusiast

Ive read many posts about the dangers of getting trace amounts of gluten from cross contamination and other sources. Im new to all this but its seems a bit unrealistic to think that trace amounts of gluten can be entirely avoided. I feel like Im doing everything right but it makes me feel worried when I read about tiny amounts of gluten making people so sick.

I think that if a person has regained their health, a tiny bit of gluten wont be detrimental. Im not implying that it would be ok to not adhere strictly to the diet, but I do think that it can make you crazy to worry about trace amounts.

Im new to this lifestyle so I may be completely wrong. One of the reasons I feel that tiny amounts might be safe is because 5yrs ago I suffered from Chronic fatigue, GI problems, spacey feelings, and the list goes one. I have suspected celiac after a long time researching, so I implemented a gluten-free diet. But I really didnt go militant with it, I just avoided the obvious things and I didnt know what to look for on labels. And as time went on I regained my health, I think it took several mos. Although once I regained my health I started adding more and more gluten products into my diet and gradually the ill health came back. Looking back what made me sick again was the amounts of gluten I was consuming. A lot! Im not sure this would not have happened had I avoided all the obvious sources, small amounts may not have been enough to push me over the edge.

Thoughts?

Steph


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



Celiac.com Sponsor (A8-M):



penguin Community Regular

Personally, I feel that if you eat anything that's come out of a grocery store, it's impossible to be completely gluten-free. The point of the diet is to eliminate all gluten that can be known. I'm sure we still get minute amounts that don't affect us, but we need to be as gluten-free as possible, if that makes sense.

Unfortunately, all food is "grown on a planet where wheat, barley, and rye are grown" :P

I'dratherbecycling Rookie

I think it depends so much on the individual person, too. I'm ridiculously, irritatingly sensitive to gluten, and have had to give up eating any "gluten free" products that weren't produced in a dedicated facility because I wound up getting sick from foods so often that are supposedly gluten-free. I know other (lucky!) people who don't have nearly the kind of reaction I do to trace amounts of the stuff.

But you're right - you can make yourself completely crazy trying to avoid every trace amount.

The up side of being so darn sensitive is that I eat a whole lot of veggies - what else is there to fill up on? :rolleyes:

Guhlia Rising Star

Please also keep in mind that just because it's not making you physically sick, does NOT mean that it's not doing damage to your intestines.

Nancym Enthusiast
Please also keep in mind that just because it's not making you physically sick, does NOT mean that it's not doing damage to your intestines.

And your autoimmune system. :(

I think you can avoid trace amounts, if you don't eat out, don't buy multi-ingredient products and don't let anyone else in your house eat it, watch the non-food stuff. All stuff that is very hard to maintain vigilence on and being a busy human of today.

pixiegirl Enthusiast

I do think you can make yourself crazy in the quest to avoid gluten. I too am very sensitive to gluten and I also travel often and have to eat out in restaurants. And I'm pretty sure once in a while I do get some gluten in restaurants even though they do try and be really careful.

I've been gluten-free since 2004 and at the beginning of the year I had an endoscopy because I was still having some severe GI issues. They found out that on top of Celiac I have Eosinophilic Gastroenteritis (EG). However even with all the eating out I do and the occasional accidentail glutening I had no signs of Celiac in my gut anymore. So although I don't think its the right thing to do, an occasional trace amount isn't enough to visably damage my gut.

Susan

LKelly8 Rookie
Unfortunately, all food is "grown on a planet where wheat, barley, and rye are grown" :P

Exactly. I do my best not to eat anything with gluten in it but the fact is that it's everywhere and tiny, "silent" :ph34r: glutenings happen. (Ninja Gluten. :lol: )

It means I work harder not to knowingly injest gluten.

(And try not to worry so much about the ninjas. :unsure: )


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



Celiac.com Sponsor (A8-M):



gfp Enthusiast

I think it depends on the person AND timing.

I think initially the setback to a small amount of gluten is a lot worse than after you have been gluten-free for months. It can feel opposite... but the actual damage and general health recover faster ...

Secondly I think there are a lot of symptoms that we don't realise until we go completely gluten-free.

The problem is when we are first diagnosed its a mystery... CC and hidden gluten ninja's lurk everywhere and so we think we are gluten-free but we are not.

Most people going gluten-free-lite seem to hit a plateau. The major symptoms subside but they are not 100%...

Most people who go 100% gluten-free then discover these symptoms they just thought were due to aging or everyone has them etc.

So much as this sucks... i think the best thing is to be completely paranoid for 2-3 months....

You can be certain about contamination of you choose the right foods...

Sure someone might have touched the carrots after touching bread BUT you can wash and then peel carrots.

Wash all meat before eating.... who knows if the butcher was making sausages before...

etc. etc.

After 2-3 months then the body is in a much stronger position so that if you do get CC or hidden gluten ninja's it doesn't knock you all the way back to where you were.

VydorScope Proficient
Personally, I feel that if you eat anything that's come out of a grocery store, it's impossible to be completely gluten-free. The point of the diet is to eliminate all gluten that can be known. I'm sure we still get minute amounts that don't affect us, but we need to be as gluten-free as possible, if that makes sense.

Unfortunately, all food is "grown on a planet where wheat, barley, and rye are grown" :P

Exactly, unless you live in a buble and produce all your own food, supplies, etc. your gonna get some. I prevent my son form ever KNOWINGLY getting gluten, thats all you can do.

KaitiUSA Enthusiast

I agree with the fact that it is impossible to avoid trace amounts of gluten. The best you can do is eliminate the things you know have gluten.

chrissy Collaborator

we re-tested our kids after 6 months of being gluten free. one of them had managed to get her TTg levels down to the normal-----which means her blood tests did not show celiac disease. this tells me that we managed to avoid even minute amounts (not likely), or that mintute amounts don't harm her when she is following the diet as well as possible. my other 2 girls had admittedly cheated on the diet.

ehrin Explorer

I agree that you could avoid trace amounts, if you blow your bubble up and never come out. Doesn't seem like a practical solution. You should minimize how many times you eat out (I went from weekly to monthly, if that) and do the best you can. That's really all you can do - do the best YOU can, because it all boils down to how vigilant you want/can be. We still have to live our daily lives!

key Contributor

I agree with what other's have said. Do the best you can, but don't be paranoid.

Also, it is recommended that we get a new toaster and not share jelly, butter, peanut butter jars, etc. that may have gluten in them from gluten crumbs.

I seem to be unable to eat out, because I was getting sick from eating out about 80% of the time. If I didn't get noticeably ill from it, I would probably take the risk. If you are able to eat out and order what is "probably" gluten free and not get sick, then I would do it. It depends on the person.

I still cook gluten for my other kids and husband some. I make them regular sandwiches, etc. I am careful about crumbs and I wash my hands alot.

Monica

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

      High TTG-IgG and Normal TTG-IgA

    2. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

    3. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

    4. - lalan45 replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

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

    • Total Members
      132,842
    • Most Online (within 30 mins)
      7,748

    aetherwax
    Newest Member
    aetherwax
    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

    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
    • lalan45
      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
    • SamAlvi
      Anti TTG (IgA) 2.430 U/mL Anti TTG (IgG) 288.2 U/mL
×
×
  • 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.