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

Accidental Exposure

ShannonA

By ShannonA
in Coping with Celiac Disease

Recommended Posts

ShannonA Contributor
ShannonA
Posted

Oh no! I was 2 weeks in on a gluten free diet and I ate soy sauce. I am so nauseated I could kick myself! I really thought soy was made only of soy beans, how naive! I am bloated and I was doing so good and feeling better than I had in such a long time. GRRRRRRRRRRRRRRRRRR

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

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted

Oh no! I was 2 weeks in on a gluten free diet and I ate soy sauce. I am so nauseated I could kick myself! I really thought soy was made only of soy beans, how naive! I am bloated and I was doing so good and feeling better than I had in such a long time. GRRRRRRRRRRRRRRRRRR

Hi Shannon, I did the very same thing. Soy sauce. Same time frame. Was a bit of a wakup call, I am afraid of everything now :) I hope you start to feel better. And no kicking, you feel bad enough already. ;)

mamaw Community Regular
mamaw
Posted

Hope you feel better soon.. But a good lesson learned Please read labels or ask before putting any food in your mouth!!! This all takes time & knowledge but you too will get there....

LauraB0927 Apprentice
LauraB0927
Posted

If you have a Whole Foods store near you, they sell a ton of different gluten free sauces that taste great. Gluten-free Tamari Soy Sauce, gluten-free Thai Peanut sauce, gluten-free Teriyaki, gluten-free BBQ sauce - the list goes on...

ShannonA Contributor
ShannonA
Posted
  • Author

If you have a Whole Foods store near you, they sell a ton of different gluten free sauces that taste great. Gluten-free Tamari Soy Sauce, gluten-free Thai Peanut sauce, gluten-free Teriyaki, gluten-free BBQ sauce - the list goes on...

Thank you!

ShannonA Contributor
ShannonA
Posted
  • Author

Hope you feel better soon.. But a good lesson learned Please read labels or ask before putting any food in your mouth!!! This all takes time & knowledge but you too will get there....

Lesson learned! Sticking to basic food for a while

ShannonA Contributor
ShannonA
Posted
  • Author

Hi Shannon, I did the very same thing. Soy sauce. Same time frame. Was a bit of a wakup call, I am afraid of everything now :) I hope you start to feel better. And no kicking, you feel bad enough already. ;)

Im afraid too so basic food only

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

It is a very hard lesson to learn but a great lesson. I think when this happens & one gets ill then they usually never will decide to ever cheat!..Feel better soon...

Any mistake can be turned around to make a good lesson so really no bad mistakes if we learn & grow from them...

eatmeat4good Enthusiast
eatmeat4good
Posted

That was my first mistake too!

A friend and I went out to "celebrate" my new gluten free diet!

We decided on a chinese buffet!

It was yummy!

And I was sick for a whole week!

And then I read that Soy sauce is actually "wheat sauce" or "gluten-juice. Ugh...oh my god...I feel your pain.

I very quickly started googling everything before I put it in my mouth.

And reading labels.

And soon after that...

Ate at an Arabic restaurant and happily ordered kebabs and rice and NO pita bread. While mindlessly eating my last three bites of rice....I realize there are those little vermicelli things in the rice! Oh no! And there was another week of sickness and horrible migraines. Very shortly I stopped eating out completely because I clearly didn't know enough about this beast called gluten...to know how to avoid him.

Talk about "Scared Straight" !!! :)

That was when I realized that avoiding gluten unsuccessfully was kinda like a playing a contact sport and getting your ass kicked repeatedly.

I started learning then. :)

ShannonA Contributor
ShannonA
Posted
  • Author

That was my first mistake too!

A friend and I went out to "celebrate" my new gluten free diet!

We decided on a chinese buffet!

It was yummy!

And I was sick for a whole week!

And then I read that Soy sauce is actually "wheat sauce" or "gluten-juice. Ugh...oh my god...I feel your pain.

I very quickly started googling everything before I put it in my mouth.

And reading labels.

And soon after that...

Ate at an Arabic restaurant and happily ordered kebabs and rice and NO pita bread. While mindlessly eating my last three bites of rice....I realize there are those little vermicelli things in the rice! Oh no! And there was another week of sickness and horrible migraines. Very shortly I stopped eating out completely because I clearly didn't know enough about this beast called gluten...to know how to avoid him.

Talk about "Scared Straight" !!! :)

That was when I realized that avoiding gluten unsuccessfully was kinda like a playing a contact sport and getting your ass kicked repeatedly.

I started learning then. :)

Yep no more eating out for a while, even though it's hard I'm trying to stick to natural foods. I'm still nauseated but hopefully it's almost over

  • 2 weeks later...
PennyH Newbie
PennyH
Posted

That was my first mistake too!

A friend and I went out to "celebrate" my new gluten free diet!

We decided on a chinese buffet!

It was yummy!

And I was sick for a whole week!

And then I read that Soy sauce is actually "wheat sauce" or "gluten-juice. Ugh...oh my god...I feel your pain.

I very quickly started googling everything before I put it in my mouth.

And reading labels.

And soon after that...

Ate at an Arabic restaurant and happily ordered kebabs and rice and NO pita bread. While mindlessly eating my last three bites of rice....I realize there are those little vermicelli things in the rice! Oh no! And there was another week of sickness and horrible migraines. Very shortly I stopped eating out completely because I clearly didn't know enough about this beast called gluten...to know how to avoid him.

Talk about "Scared Straight" !!! :)

That was when I realized that avoiding gluten unsuccessfully was kinda like a playing a contact sport and getting your ass kicked repeatedly.

I started learning then. :)

I'm five weeks into this and I am terrified to eat out! I've been sick for so many years I don't want to take any chances. Do you ever get over this fear? I recently learned that if you kiss someone who just ate gluten that that's cross contamination! My niece found that out the hard way with her boyfriend. She was sick for weeks before they figured it out. I'm single and can't even imagine how I deal with that on new dates. It's embarrassing enough to make the fuss to get a gluten-free meal..... yikes. anyone have advice? Penny

~**caselynn**~ Enthusiast
~**caselynn**~
Posted

Help with the kissing or the eating out?? Haha ? I learned cross contamination by kissing the hard way, phew that only took me once!! Now eating out is a tough subject, you have got to find a place you can trust. I live in a small town and the restaurants here are owned by people I've become friends with, easy to get aroun gluten when they are well informed. Now, when I travel, I google for gluten-free menus, place phone calls, read comments by other gluten free people, and quiz the wait staff. The biggest thing is for you to be aware of what you can and can't eat and don't be afraid to tell them, it's our health not theirs! Lol another thing I do is leave a comment on their website. If I've had a great experience, I like for them to know, positive feedback reinforces that they are doing well! A properly trained staff is half the battle! Good luck! :)

MichelleD Newbie
MichelleD
Posted

I made that mistake 3 months in. I knew about soy sauce and went out for sushi. Did not have soy, but my spicy tuna and my son shared some of his roll with me that was a california roll with tuna on top. woke up the next day to a rash all over my belly. looked online and the imitation crab in the california roll is full of gluten. As far as eating out, I try to call ahead when going somewhere new to see what they offer and knowledgeable they are. Last weekend I was out with my family and we tried a mediterrain cafe on a whim. I asked the owner what she would recommend for me, and she has another customer that is gluten free, so told me the exact plate I should order and knew that her rice, hummus and all salad dressing were gluten-free. I didn't even look at the menu. It seems the best way to eat out is to ask the waiter/waitress what the chef recommends that is gluten-free. when I don't do that, I usually get sick. Hope that helps with eating out.

Mom-of-Two Contributor
Mom-of-Two
Posted

Being fearful of eating out will be there- there are good safe places to eat, so long as the person taking care of you knows what they are doing! I have been to Outback and PF Changs each once, both fabulous experiences, great knowledge and super nice and helpful. I also eat at Chipotle once a week, no problem, I order a bowl, they wash hands and change gloves, and get fresh cheese from the back for me. Never had a problem there, I do lots of homework, ask questions, and know how comfortable I feel at a particular place, I stick to dedicated gluten free menus and eat out not very often, but I also want to learn to live with this diet the rest of my life, keep being social, but not being sick in the process.

When I went to PF Changs, I felt like I was being treated special, my own gluten free sauce, a special plate, the manager even bought me a gluten free dessert which was yummmmy!!!

Do your homework, I don't eat anything new without reading a label- I have made probably 20 calls or emails about products, medications, etc to determine if they are gluten free. It takes work, but you will learn to be an investigator!

  • 2 weeks later...
LauraB0927 Apprentice
LauraB0927
Posted

Being fearful of eating out will be there- there are good safe places to eat, so long as the person taking care of you knows what they are doing! I have been to Outback and PF Changs each once, both fabulous experiences, great knowledge and super nice and helpful. I also eat at Chipotle once a week, no problem, I order a bowl, they wash hands and change gloves, and get fresh cheese from the back for me. Never had a problem there, I do lots of homework, ask questions, and know how comfortable I feel at a particular place, I stick to dedicated gluten free menus and eat out not very often, but I also want to learn to live with this diet the rest of my life, keep being social, but not being sick in the process.

When I went to PF Changs, I felt like I was being treated special, my own gluten free sauce, a special plate, the manager even bought me a gluten free dessert which was yummmmy!!!

Do your homework, I don't eat anything new without reading a label- I have made probably 20 calls or emails about products, medications, etc to determine if they are gluten free. It takes work, but you will learn to be an investigator!

I LOVE going to PF Changs!!! Its a place I can go to and actually feel comfortable and normal!

There's a couple apps for smart phones that will help you locate gluten free restaurants in your area. They also include reviews and other people will post their experiences at those restaurants. Its been very helpful for me - the apps are "Gluten Free Registry" which is free and "Find Me Gluten Free."

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,680
    • Most Online (within 30 mins)
      7,748
    ashley94261
    Newest Member
    ashley94261
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.