Glutened In Restaurant

[KikiB]

I'm not sure if this is the right section for my question....  I have been gluten free since last November.  My symptoms before Celiac testing were severe fatigue and muscle weakness, with nausea.

 

I've been gluten free since November.  I struggled a little bit in the beginning until I figured out that I also had developed a soy intolerance.

 

Last night I went out to a restaurant I haven't been to since going gluten free.  They have a gluten free menu and the waiter assured me up and down that they were very careful, blah, blah, blah.  My friend also ordered an appetizer off the gluten free menu and we shared our appetizers and he did not get sick.

 

I started to feel poorly after the appetizers.  Didn't eat much of my dinner.  And after dinner had to excuse myself twice to go to the ladies room.  On the second visit my body exploded. 

 

I've never had such a violent reaction before.  It was mortifying.  I had an out of town guest with me who got left sitting at the table alone.  And then he had to be driven home by someone who threw up in her hair because I couldn't get my hair out of the way fast enough.  By the grace of God I was able to drive him back to his hotel and get home before getting violently sick some more.  I'm missing work today and slept for about 10 hours (woke up 3 times in between).

 

I called the restaurant this morning to double check there was no gluten or soy in my meals.  There must have been cross-contamination, right?

 

Is this normal?  This is not how I reacted before to gluten or soy. 

 

 

[NateJ]

wow, that sounds more like food poisoning, but yeah. I've had that happen before.

One of the last times I tried eating out I ate a Mexican place that same thing happened to me.

They even had very limited items with Gluten in them, but I still caught something. it was slower to come on to me, but exact same symptoms.

Sometimes your body just needs to get rid of it.

[KikiB]

Does food poisoning hit that fast?  My friend didn't get sick and he ate the same thing.  I'm at a loss.  I finally managed to get out of bed at 6 pm and take a shower.

[NateJ]

Not normally, the symptoms besides that sound like it. It sounds more like an allergic reaction and/or some anxiety type IBS mixed in.

Usually Celiac wouldn't trigger that fast as it would take a bit to reach your intestine.

I suffer almost identical problems. Eating out can be stressful for anyone in our situation. Even reassurance from the places staff doesn't do much for me.

[Adalaide]

You wouldn't be the first person to get sick from a restaurant, not even able to leave before becoming terribly ill. I've seen some people say they also get sick throwing up with it, and while that has rarely happened to me, I do get extremely nauseous. I simply hate vomiting and repress the urge as much as possible. That said, there was one time when I was home that I did find myself laying in the middle of the floor and the only reason I wasn't vomiting on the carpet is because my husband got me something to vomit into, so vomiting into you hair seems somewhat reminiscent of that at least. (If that cheers you up any?)

 

It isn't the least bit unusual to react that quickly. If I eat something contaminated I'll begin feeling off after about 10 or 15 minutes, after 20-30 I'll be in a bathroom, I doubt I need to elaborate on what I'm doing in there. My reaction now is nothing like my day to day life before going gluten free. Meh... I guess its just how it is.

 

Sorry it didn't go well for you. Rest, stay hydrated, and treat your stomach delicately while indulging in any comfort foods you know are both safe and that won't make you feel icky. A lot of restaurants aren't like the one you went to and won't screw up. Don't let this turn you off to having a normal life that includes eating out.

[dilettantesteph]

Some of us are sensitive to lower levels than others.  If the restaurant usually caters to those who are a little less sensitive than you are, they could think that the food is very gluten free when there is a tiny bit of contamination in it that got to you.  I finally gave up on going to restaurants as I got cc'ed even from ones that were recommended by my local celiac community.  It took some time for me to realize that I am more sensitive than a typical celiac, and the recommendations that apply to most do not apply to me.

 

I hope that you feel better soon.  It sounds like a horrible experience.  I had a few of those myself which is why I don't risk it anymore.

[Gemini]

I'm not sure if this is the right section for my question....  I have been gluten free since last November.  My symptoms before Celiac testing were severe fatigue and muscle weakness, with nausea.

 

I've been gluten free since November.  I struggled a little bit in the beginning until I figured out that I also had developed a soy intolerance.

 

Last night I went out to a restaurant I haven't been to since going gluten free.  They have a gluten free menu and the waiter assured me up and down that they were very careful, blah, blah, blah.  My friend also ordered an appetizer off the gluten free menu and we shared our appetizers and he did not get sick.

 

I started to feel poorly after the appetizers.  Didn't eat much of my dinner.  And after dinner had to excuse myself twice to go to the ladies room.  On the second visit my body exploded. 

 

I've never had such a violent reaction before.  It was mortifying.  I had an out of town guest with me who got left sitting at the table alone.  And then he had to be driven home by someone who threw up in her hair because I couldn't get my hair out of the way fast enough.  By the grace of God I was able to drive him back to his hotel and get home before getting violently sick some more.  I'm missing work today and slept for about 10 hours (woke up 3 times in between).

 

I called the restaurant this morning to double check there was no gluten or soy in my meals.  There must have been cross-contamination, right?

 

Is this normal?  This is not how I reacted before to gluten or soy. 

Kiki......you have a soy intolerance and going out to dinner with that intolerance is much, much harder than just gluten.  Soy is used as an immulsifier in many foods and most people, without strong knowledge of food intolerances and food in general, usually miss that fact.  Usually with gluten, you don't react quite as fast as that.  It's not impossible but usually there is time in between because it takes a bit of time before your immune system is fired up and attacks.  I would bet that you were served something with soy lecithin in it and the soy intolerant have problems with that.  You also haven't been gluten-free for very long so if you took a hit, your reaction would be harder as you are not healed yet.

 

I get reactions exactly like yours....it's ugly so I know the pain you feel.  I start around 5-6 hours after ingestion and am violently sick for hours after.  Thankfully, I have been doing this for a long time so it rarely ever happens anymore.

 

Take it easy and rest....you will recover.  But I am not sure how successful going out to dinner will be if you have issues with soy.  It literally is in everything out there.....much harder to avoid than gluten.

[KikiB]

Thanks, everyone.  The sympathy really helps. 

 

Gemini, I think you may be right.  Now that I can think more clearly, I think it must have been soy because of my violent reaction.  I am going to call the manager back today and ask him to check the actual ingredients in what I ate.  They probably don't realize that there is soy in mayo and lots of other stuff.  And I can't tolerate soy lecithin either.  I should have thought of it.  I went to Chili's once and they have an allergen menu that lists every allergen and there were only a few things that I could have without both gluten and soy.

[KikiB]

Well the depression really hit big today.  Not sure if it is a symptom of the soy contamination or just from the fact that I am still sick and probably will be for at least 2 weeks, was horribly sick at the restaurant (Linda Blair, Exorcist sick), embarrassed to death because it happened while with my out-of-town friend, or  because he left town without responding to my email (nevermind trying to make me feel better about going Linda Blair in front of him).

 

I know it wasn't my fault, but it's beyond embarrassing.  And depressing to think that I can't go out with my friends like a normal person.  I'll always be the outcast that can't go, or can't eat.  And I'm going to spend the rest of my life afraid to eat unless I'm eating at home.

 

Yep.  Lot of tears today.

[Gemini]

I'm sorry you are feeling so down, Kiki.  You are emotional because you were so sick and that happens. I had that happen once.....it was 2 years before I was diagnosed and I was unstable and didn't realize how sick I actually was. I felt fine but it didn't take much to throw me off.  I had a sugar reaction to a pre-dinner drink in a restaurant (which had never happened to me before) and all of a sudden, I got tunnel vision and started to sweat.  I knew I was going to pass out and tried desperately to not let that happen but it did.  I was soooooooo embarrassed!  They called an ambulance and I was mortified.  I was the pre-dinner show for everyone that night.  Ended up in the ER all screwed up and they STILL couldn't figure out the problem.  So, my dear, I know how that feels.  I can laugh about it now but it wasn't funny then.

 

The next big OOPS was one night I arrived at the gym and had felt 100% normal when I walked in.  This was post diagnosis and healed.  I did one set of exercises and all of a sudden, waves of nausea swept over me.  I did not know it then but I had been cc'd at the salad bar at work, even with all my anal retentive things I do to avoid that.  I ran out the gym door and not 1 mile up the road, I knew it was coming.  I pulled over and grabbed my gym bag and dumped the contents on the floor and pulled a Linda Blair into my gym bag!  Just like you.  I threw up all the drive home in my bag.  What a horror scene.  However, nothing 

got in my car and I dumped the bag in the trash barrel and collapsed on my bed.  The life of a Celiac, on those rare occasions when it doesn't work out so well!

 

So, you see, there will be down days and there will be normal, up days.  You might be able to eat soy again down the road, you never know. And that friend of yours who left without talking to you?  Not much of a friend, if you ask me.  There should have been concern for you and there wasn't. Don't dwell on that but take care of yourself...things will get better, I promise you. I hope you could laugh at my stories and know that you are not alone in your embarrassment. We all have been there!  

[w8in4dave]

I react very fast to Gluten, within minutes!! I am in the restroom, not usually throwing up tho. Sometimes feeling ill for a day afterward but not sick to my stomach. I guess everyone reacts different. Hope it is much better now. Hopefully your recovered and back to work. Did you call and ask how they prepared the meal? What did you have anyway? If you don't mind me asking...

[KikiB]

So, you see, there will be down days and there will be normal, up days.  You might be able to eat soy again down the road, you never know. And that friend of yours who left without talking to you?  Not much of a friend, if you ask me.  There should have been concern for you and there wasn't. Don't dwell on that but take care of yourself...things will get better, I promise you. I hope you could laugh at my stories and know that you are not alone in your embarrassment. We all have been there!  

 

Thanks, Gemini.  It all feels so overwhelming again.  Thank you for sharing your stories -- it's nice to know I am not alone.  I think I need to put some kind of emergency "bag" in my car -- but that will only solve half the issue, if you know what I mean. 

 

I know I just have to keep going, but I guess I am still mourning the loss of eating like a normal person.  I really thought I had moved past that.  And I am hurt that my friend has not bothered to check on me, let alone send any form of communication.  Who does that?  I don't think my getting sick deserves a shunning.  It's not like I don't already feel like an outcast every time food is involved.

 

Thank you so much for your encouragement.  It has truly brought me comfort. 

[KikiB]

I react very fast to Gluten, within minutes!! I am in the restroom, not usually throwing up tho. Sometimes feeling ill for a day afterward but not sick to my stomach. I guess everyone reacts different. Hope it is much better now. Hopefully your recovered and back to work. Did you call and ask how they prepared the meal? What did you have anyway? If you don't mind me asking...

 

This is what I had off the gluten-free menu:

 

Scallop BLT, honeydew vinaigrette

Layered Seafood Cocktail, orange chili sauce

Grilled Island Style Fresh Fish with tropical fruit salsa, jasmine rice and bok choy Asian slaw

 

I also asked the waiter two separate times to clarify with the chef that there was no soy in any of the ingredients.  I have sent a very detailed email to the manager and am waiting for a response.

[hbunting86]

Wow that sounds awful... you have my every sympathy! As for your friend.... well, lets just say if they were in the same position they'd probably think twice before being so mean as to not talk to you or contact you afterwards.

 

I had something similar at a restaurant - I had a steak with a peppercorn sauce and they assured me it was 100% gluten free.  Not so - the drive home (around 45mins) had me vomiting violently and had to pull over on the motorway.  Really really bad.  There have been a few times my boyfriend has seen me hugging the toilet bowl and me desperately trying not to look a complete washout.  Luckily he understands and said yesterday (after a situation the other day) that he never wants to see me like that again - we have to try to sort it or just not eat out.  

 

I'd be interested to see how the restaurant responds.  My boyfriend emailed the restaurant I got sick from and we never heard anything back - so much for being professional! In the mean time don't be too hard on yourself.  It's tough enough as it is, so do something to cheer yourself up and that puts a smile on your face

 

H

[AlwaysLearning]

I hope the point where you tell that story and laugh about it isn't too far in the future. It is going to be a good one when you do get there.

Yeah, if an actual ingredient makes its way into my food, I'll start to have digestive reactions within minutes though I haven't been hit so hard as you ... yet. But minor contaminations normally take a little longer for me, about an hour or so later and are more about the sinus, mood, and headaches.

Sorry your "friend" wasn't more understanding. I suppose those who don't have food allergies can't relate though I'm still glad I don't have one that causes anaphylactic shock. Those peanut-allergy folks still have it worse than us.

[twe0708]

KikiB,

 

Not sure if your reaction is normal for most but for me that is normal.  If I eat something that contains gluten, I have about 30 to 45 minutes to get home before I get really sick and end up in bed for the day.  I ate out at 5 Guys the other day and within 30 minutes of eating it was like I had taken a very strong laxative and that was just form a little cross contamination.    If I was to eat one cookie, my symptoms would be the same as yours up above.      It's like having the flu.  Good luck!

I'm not sure if this is the right section for my question....  I have been gluten free since last November.  My symptoms before Celiac testing were severe fatigue and muscle weakness, with nausea.

 

I've been gluten free since November.  I struggled a little bit in the beginning until I figured out that I also had developed a soy intolerance.

 

Last night I went out to a restaurant I haven't been to since going gluten free.  They have a gluten free menu and the waiter assured me up and down that they were very careful, blah, blah, blah.  My friend also ordered an appetizer off the gluten free menu and we shared our appetizers and he did not get sick.

 

I started to feel poorly after the appetizers.  Didn't eat much of my dinner.  And after dinner had to excuse myself twice to go to the ladies room.  On the second visit my body exploded. 

 

I've never had such a violent reaction before.  It was mortifying.  I had an out of town guest with me who got left sitting at the table alone.  And then he had to be driven home by someone who threw up in her hair because I couldn't get my hair out of the way fast enough.  By the grace of God I was able to drive him back to his hotel and get home before getting violently sick some more.  I'm missing work today and slept for about 10 hours (woke up 3 times in between).

 

I called the restaurant this morning to double check there was no gluten or soy in my meals.  There must have been cross-contamination, right?

 

Is this normal?  This is not how I reacted before to gluten or soy. 

[KikiB]

 

KikiB,

 

Not sure if your reaction is normal for most but for me that is normal.  If I eat something that contains gluten, I have about 30 to 45 minutes to get home before I get really sick and end up in bed for the day.  I ate out at 5 Guys the other day and within 30 minutes of eating it was like I had taken a very strong laxative and that was just form a little cross contamination.    If I was to eat one cookie, my symptoms would be the same as yours up above.      It's like having the flu.  Good luck!

 

Thank you!

 

 

I hope the point where you tell that story and laugh about it isn't too far in the future. It is going to be a good one when you do get there.

Yeah, if an actual ingredient makes its way into my food, I'll start to have digestive reactions within minutes though I haven't been hit so hard as you ... yet. But minor contaminations normally take a little longer for me, about an hour or so later and are more about the sinus, mood, and headaches.

Sorry your "friend" wasn't more understanding. I suppose those who don't have food allergies can't relate though I'm still glad I don't have one that causes anaphylactic shock. Those peanut-allergy folks still have it worse than us.

Yes, I try to tell myself there are people worse off than me.  But sometimes my own pity party wins out.

[w8in4dave]

This is what I had off the gluten-free menu:

 

Scallop BLT, honeydew vinaigrette

Layered Seafood Cocktail, orange chili sauce

Grilled Island Style Fresh Fish with tropical fruit salsa, jasmine rice and bok choy Asian slaw

 

I also asked the waiter two separate times to clarify with the chef that there was no soy in any of the ingredients.  I have sent a very detailed email to the manager and am waiting for a response.

Wow sounds great!! I think the ONLY thing I'd of worried about is the sauce. I have never heard of Scallop BLT .. but it sure sounds good! Have you heard from your friend as of yet? Hopefully all is well ....

[AndreaBozeman]

I have this same type reaction when eating at most restaurants.  I ate broiled seafood with lemon juice last night in a restaurant and was feeling bloated, crampy and nauseous within a half hour.  Today, I am exhausted, weak and fatigued but still have to work.  There is no one to call in to take my place, and I just cannot be out.  I am so depressed that it seems I just cannot dine out!  

 

Also wondering if anyone experiences widespread pain and stiffness after being "glutened".  Sometimes this lasts for 10 days-2 weeks.  Could not function without Ibuprofen every four hours.  Anybody else experience this?

 

Andrea