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

First Confirmed Glutening

C-Girl

By C-Girl
in Coping with Celiac Disease

Recommended Posts

C-Girl Contributor
C-Girl
Posted

Well I've done it. I've been glutened. Although I've been exceedingly careful with restaurants, I went to a Korean place I trust - the owner herself spoke to me at length about the measures they take to ensure their gluten-free items are gluten-free - and choose poorly. In the past I'd always ordered items that had little chance of being mixed up with gluten ones, ones that had just whole ingredients, like the bibimbap. This place doesn't use wheat-based soy sauces, so they're pretty safe. This time, I made a mistake and ordered these rice sticks. Turns out the server, although I emphasized that I had celiac, and she acknowledged it, failed to make sure that I got the gluten-free version. I didn't even know they had a version that had wheat.

 

That night, in the middle of the night. There it was. GURGLE.

I tried denying, maybe it was gas. GURGLE my stomach rumbled. I could feel the intestines twisting into knots. GURGLE!!! I ran to the bathroom.

Came back to bed. 30 minutes later. GURGLE!! back to the bathroom. And on and on, all the while trying not to wake the DH.

 

Next day, step on the scale, sure enough. Gained 4lbs overnight. The next day, the deep depression sunk in and now almost 2 weeks later I'm just digging out of the hole.

 

I wrote the restaurant and got a very sincere apology. They're taking more steps to ensure it doesn't happen again. Do I take the risk and go back? Or are they dead to me?

 

Also - tinnitus?! Does anyone else get a big increase in ringing in the ears from glutening? Mine are driving me crazy.  I had it before, but noticed it's been much worse the past week.

 

Sigh. Guess I need to rely on my own cooking from now on.

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

(hugs)  I hope you recover soon.  :(

I would be careful about going back.  It may be safe now, but you will need to be extra careful with them.  You already know that.  :)

 

Tinnitus?  I have that all the time too. I can't honestly say it was worse when glutened but we're all different.

 

Hang in there.

notme Experienced
notme
Posted

:(  aww :(  feel better.  it is about 2 weeks for me, too, to recover.  yup, i mostly only eat what i cook.  me and the freezer are bff's.  

 

lolz - i have tinitus <sp) but i attributed that to too much loud music (hey, turn that up) and i am pretty deaf in one ear from underestimating how loud a .22 is (they might be little....) always wear ear protection.   <_<  :ph34r:

icelandgirl Proficient
icelandgirl
Posted

Hello and (((hugs)))

It sounds awful. The 2 times I've been glutened were from restaurants and it took me about 2 weeks to recover. It's terrible. I now only eat out at the one gluten free restaurant we have. Other than that I do a whole lot of cooking. I'm a stay at home mom of 3 and can't be out for 2 weeks.

For me...I wouldn't go back...I got glutened at Red Robin. Lots of people have great experiences there. When I think of it I am reminded of 2 weeks on the couch holding my side and running to the bathroom. I won't be going back.

I have tinnitus to...no idea why?

So glad you are feeling better!

C-Girl Contributor
C-Girl
Posted
  • Author

I've read that tinnitus can be caused by a vitamin b12 deficiency. But my blood levels were fine in 2013 when my celiac was first diagnosed, so maybe it's just too much loud music. Apparently it's not physical damage, it's something in the brain, so maybe instead of brain fog I get ringing ears. I haven't felt that foggy, only tired and a little weepy, though I can also attribute that to feelilng sorry for myself.

 

It's such a bummer because the one sushi restaurant that took good care of me seems to have changed management and the quality of their food went downhill, and so now I'm down to two restaurants with celiac chefs that aren't totally gluten-free. At least the one has a dedicated fryer.

nvsmom Community Regular
nvsmom
Posted

Tinnitus is not related to B12 in my case either.  My last B12 check was actually above normal, and the ringing was the same as it is now, and was a few years too.

 

I hope you find other great restaurants. (hug)

cyclinglady Grand Master
cyclinglady
Posted

So sorry!

Each time I go out to eat (rarely), I am worried! Does not make for a pleasant and relaxed dining experience.

I hope you feel better soon!

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

Celiac.com Sponsor (A8-M):


Serielda Enthusiast
Serielda
Posted

I am sorry that happened to you,(hugs) any more with me I eat at home because of the last time a restaurant glutened me. P.F. Chang's in the past had been a good experience but the last time was anything but. With in a little while I felt beyond terrible and at that point I was done with them. This was back in August before my diet got modified drastically. I hope things clear up quickly for you.

Well I've done it. I've been glutened. Although I've been exceedingly careful with restaurants, I went to a Korean place I trust - the owner herself spoke to me at length about the measures they take to ensure their gluten-free items are gluten-free - and choose poorly. In the past I'd always ordered items that had little chance of being mixed up with gluten ones, ones that had just whole ingredients, like the bibimbap. This place doesn't use wheat-based soy sauces, so they're pretty safe. This time, I made a mistake and ordered these rice sticks. Turns out the server, although I emphasized that I had celiac, and she acknowledged it, failed to make sure that I got the gluten-free version. I didn't even know they had a version that had wheat.

 

That night, in the middle of the night. There it was. GURGLE.

I tried denying, maybe it was gas. GURGLE my stomach rumbled. I could feel the intestines twisting into knots. GURGLE!!! I ran to the bathroom.

Came back to bed. 30 minutes later. GURGLE!! back to the bathroom. And on and on, all the while trying not to wake the DH.

 

Next day, step on the scale, sure enough. Gained 4lbs overnight. The next day, the deep depression sunk in and now almost 2 weeks later I'm just digging out of the hole.

 

I wrote the restaurant and got a very sincere apology. They're taking more steps to ensure it doesn't happen again. Do I take the risk and go back? Or are they dead to me?

 

Also - tinnitus?! Does anyone else get a big increase in ringing in the ears from glutening? Mine are driving me crazy.  I had it before, but noticed it's been much worse the past week.

 

Sigh. Guess I need to rely on my own cooking from now on.

Chibiehotaru Newbie
Chibiehotaru
Posted

I'm sorry. I think we've all been there before and it sucks! :( I glutened myself 2 weeks ago at work with an ibuprofen. I normally carry tylenol in ny purse because I know they're safe, but I didn't have any and took some ibuprofens from the medicine cabinet at work. Within an hour I felt my stomach start to cramp in agonizing pain and also tried denying I was glutened. I had to leave work early. I felt humiliated and for nearly a good two weeks felt all the depression and diaherria. It sucks because I felt like I let myself down that I wasn't careful. Also, because if I was going to get glutened why on an ibuprofen and not a slice of awesome pizza or cake??? Lol :) if I was you, I'd probably not go back. It sounds like you were pretty clear and took all precautions the first time. It was be a dream if there was a chain of solely gluten-free restaurants for people like us! A girl can dream, right?! Hope you feel better soon... *hugs*

Zebra007 Contributor
Zebra007
Posted

Gosh this is why I don't eat out much! you just cannot trust people, not sure why that is exactly....maybe they just don't care enough, its just sloppy, and if they had this problem they would understand.

kareng Grand Master
kareng
Posted

:( I glutened myself 2 weeks ago at work with an ibuprofen.

 

 

I have never seen any ibuprohen with gluten.  Which brand is it?

bartfull Rising Star
bartfull
Posted

From Advil.com faqs:

I am allergic to gluten. Is it all right for me to take this product?

Advil® Liqui-Gels® and Advil® Migraine and contain a wheat derivative, and are not gluten-free. You should check with your doctor if you have any concerns about taking this product.

kareng Grand Master
kareng
Posted

 

From Advil.com faqs:

I am allergic to gluten. Is it all right for me to take this product?

Advil® Liqui-Gels® and Advil® Migraine and contain a wheat derivative, and are not gluten-free. You should check with your doctor if you have any concerns about taking this product.

 

 

 

Thanks.  I hadn't seen that.  I never use the liquid gels - they seem odd to me.   :lol:

Archived

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

Go to topic listing

  • 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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.