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

Recommended Posts

C-Girl Contributor

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

(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

:(  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

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

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

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

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

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

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

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

:( 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

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

 

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.