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

Oh Hell, I Just Got Glutened


Mack the Knife

Recommended Posts

Mack the Knife Explorer

Tonight I went out to dinner with a friend. We went to a restaurant where I often eat and have never had a problem. The owners really look after Coeliacs, they consulted with a Coeliac specialist when they set up their business, they have a whole separate gluten free menu, bake their own bread and cakes, are aware of cc issues with deep fryers etc. I always feel really safe eating there.

So we arrive and the owner bustles out, gives me a gluten free menu and talks me through the specials board saying you can have this, you can't have that and I'll check with the chef, etc. Then she tells me that there's a lentil soup that's just been made that's not on the specials board yet and I can have that with gluten free bread. I love lentil soup so I order it.

The soup comes out and I tuck in. It's pretty good soup but there's an odd taste.... a famililiar taste. While I'm sitting there trying to place it, I look more closely at my soup and realise that some of the lentils don't look like lentils - they look like grains. In fact they look like..... and then I stopped eating.

Yep. My lentil soup was full of barley. The owner turned white when I asked her about it (desperately hoping I was mistaken) and whisked it away. She was really, profoundly apologetic, gave me another meal and didn't charge me for anything. She was very upset. She actually knew it had barley in it but didn't connect it to gluten for some reason. I guess we all have days when we miss the obvious. But damn...

So now I'm sitting here feeling like a ticking time bomb wondering when I'm going to get sick. Or even if. I was only diagnosed five months ago and have been super careful. This is the first time I have definitely eaten gluten so I really don't know how I am going to react.

Anyway, I guess the moral is that you have to look after yourself. Even though I was at a place that really caters for Coeliacs, I should have questioned the specials more carefully. It's best to treat everything suspiciously.

I'll let you know how I go. Sigh.


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



Celiac.com Sponsor (A8-M):



tictax707 Apprentice

ooooh I am so so sorry to hear about this. :o But here are two thoughts for you: 1. I had a similar experience once before but the offending ingredient was soy sauce. I flipped the hell out. i was not as calm seeming as you. I did not take it out on the staff but was in my own private panic. Tried to induce vomiting, (have no idea how bulemics do it) no such luck. Ultimately though, nothing really happened. 2. At the celiac conference here in LA a few weeks ago, one of the speakers (a leading doctor specializing in celiac disease) mentioned that often times when we ingest gluten we actually don't get any symptoms. Very surprising to me, but maybe it will give you a ray of hope/optimism that this will pass with few bumps... I'll cross my fingers for you!!

Ahorsesoul Enthusiast

This place is trying so hard I certainly would not me mad at them. Upset, that I was going to get sick but not mad. They are probably still having nightmares about a lawsuit. I would eat there again. But it does show that even people who have been educated in what has gluten will forgot something once in awhile.

Skylark Collaborator

I hope you don't get too sick. :( It's so frustrating when you ask all the right questions, and something still goes wrong. I'm glad to hear the owner was apologetic and has some understanding of what she has done to you.

LoraW76 Rookie

Sorry to hear about this. I have eaten at a local mexican restaurant where I live and no matter what, I always question the waiter as to whether or not my corn tortillas are actually corn. It'll give me a panic attack to eat out at times. I have had an extensive conversation w/ the pwner about celiac and a manager has a wife w/ celiac. I also find that I have dreams where I am eating gluten and I freak out! I try to vomit in my dreams as well. :) No one understand like we do.

Mack the Knife Explorer

Well, it hasn't been too bad. About 18 hours after eating the soup I developed a headache (very unusual for me) which continued all night. I completely lost my appetite, got really tired and couldn't keep my eyes open. So I went to bed but couldn't sleep. So I lay awake for hours feeling simultaneously exhausted and wired.

This morning I still have a slight headache and no appetite. I'm very constipated but that's really normal for me these days. Otherwise my stomach is ok.

So that's good but I'm a bit concerned that I don't have clearer cut symptoms of being glutened. I get symtoms like these very regularly despite being strictly gluten free.

I was diagnosed five months ago and the exhaustion and constant low grade digestive issues haven't improved much. So now I'm wondering if I'm still being exposed to gluten somewhere. I'm getting the Coeliac serology tests redone and another biopsy so I should know soon.

modiddly16 Enthusiast

SOOO many people are going to jump on me for doing/saying this...but...when I knowingly get glutened, sometimes I take a laxative to work it more quickly out of my system. Mind you, I've been gluten free for almost 7 years so I rarely get glutened but it does happen. I wouldn't recommend you taking a laxative every time you get glutened if it happens once a week. This probably isn't the most health conscious thing to do, however, my doctor said its not damaging in moderation and helps lessen the reaction to the gluten. Not to say I always know when I get glutened or that it helps the reaction at all but it does push everything out of your system in a more timely fashion.

I'm prepared for the onslaught of horrors coming my way from the board members, but I stand by my methods :rolleyes::blink:


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    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

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.