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

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.