Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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:

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
C-Girl Contributor
C-Girl
  • Author
Posted

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.

Link to comment
Share on other sites
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)

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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*

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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?

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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:

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,046
    • Most Online (within 30 mins)
      7,748
    Averyreed8
    Newest Member
    Averyreed8
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Finding out I’m coeliac whilst pregnant

      By cristiana · Posted

      Hi Katie I am so sorry you had two miscarriages in the past.  Try not to worry, though, because it could be that they were unrelated, perhaps? Well done for contacting your GP.  Is it possible that you can speak to your midwife in the meantime for a chat?    Cristiana  
    • Katiec123
      Finding out I’m coeliac whilst pregnant

      By Katiec123 · Posted

      @cristiana hi!  the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 
    • cristiana
      Finding out I’m coeliac whilst pregnant

      By cristiana · Posted

      @Katiec123 Welcome to the forum. I started to have symptoms related to coeliac disease (mouth ulcers, aura migraines etc) but no gastric symptoms during my first pregnancy.  That went to term, in fact, I was 10 days over and had to be induced.  But my second baby, born 21 months later, arrived at 33 weeks.  He's now doing well, and taller than all of us - it was just an earlier than expected arrival! I agree, it would not be wise to eat gluten  if there is any suspicion that you have coeliac disease during a pregnancy.   It would of course be good to know for sure, one way or another, because I believe coeliacs receive extra monitoring during pregnancy in many countries.   I think it may be well worth asking your GP if you can be referred to a gastroenterologist for a formal diagnosis asap.   By the way you spell 'coeliac' I'm guessing you are posting from the UK?  If that is the case, the NHS may rush things along for you, I suspect they will.  If it appears that they cannot refer you urgently, if you have the money for a private consultation it might be well worth it, as there is a trend here in the UK (I'm British) to diagnose coeliacs without the need for an endoscopy if the blood test results are compelling. Sounds like this is the case for you.  If you can see a gastroenterologist privately s/he might be able to diagnose you there and then (make sure you take a printout of your blood tests). Generally, there is a lot of support for coeliacs through the NHS, with a nutritionist, annual reviews and blood tests to check for diet compliance and health related issues, DEXA scans to check bone density, extra vaccinations where indicated and in some areas, certain gluten free food available on prescription.  So for lots of reasons, if you can get a diagnosis it's worth it. I hope all goes well with your appointment, let us know how you get on.
    • Shireen32
      Still testing positive after being gluten free for one year ?!!

      By Shireen32 · Posted

      Hi , since being gluten free I am still having bad stomach problems . Such as constant gas in my stomach 24/7 ,burning, constant bubbling noises coming from my stomach and gurgling sounds that never stop .Pain under the left side of my rib cage when ever I eat and just always there’s pain there  .  My symptoms have not improved at all since being gluten free.  Could this be refractory coeliac disease ?? How is that even diagnosed or confirmed  ?  I had tests recently and this is what they say :Endomysial abs (IgA) -Positive  TTG abs (IgA)U/ml : My result is : 0.9 U/ml The Range:0 - 10 U/ml What does this mean pls ??? How can I still test positive for Endomysial abs when I am gluten free and am very careful about cross contamination? Do I even have coeliac disease I’m convinced some other digestive disorder is causing these symptoms .   I also have not had a endoscopy and now the gastroenterologist calls me after one year ( I’m from the uk and have free healthcare which has been such a nightmare with all this and never help me  )  so as I am gluten free the gastroenterologist advised me to start eating gluten again to be referred for a biopsy .. Is a biopsy even worth me doing ? The only proof I have is when I was eating gluten I could never get my ferretin , vitamin d and folate levels up . And since being gluten free these have gone up a little bit  . But that doesn’t always mean coeliac as I know gluten stops absorption in even normal people  . Pls can anyone shed some light it’s much needed ! And share some advice or answer my questions above . I have no idea with this whole coeliac stuff and am very much struggling .Much Appreciated .  
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

      By knitty kitty · Posted

      Vitamin D deficiency.  Not enough Omega Threes. Another autoimmune disease like arthritis, maybe.    
×
×
  • Create New...