Severe reaction to accidentally eating gluten

[Blessedmewith4]

 I have been a diagnosed Celiac for 6 years now. The moment I was diagnosed I have lead a strict gluten free life, I wasn't taking any chances and wanted to feel better.  Over the past 6 years I have never intentionally eaten gluten, but there have been times that I have had cross contamination, especially eating out. 

Yesterday was quite an experience and I've learned from it and upon trying to research it I found nothing....I'm hoping I'm not the only one, although I wouldn't wish this on anyone. 

 About a year ago I found a Chinese restaurant that had an owner who's claim to fame was she had found ways to make just about everything on the menu gluten free. Gluten free Chinese food? Yes please!! I ate there 4 times with no reaction....ahh, life is complete!....until yesterday. I ordered the gluten free potstickers and sweet and sour prawns. 

 About 2 hours later I started feeling really nauseous. The first thing I thought was maybe I got cross contaminated. Then within the hour I told my friend that  I needed to go to the emergency room. I had SEVERE middle back pain and upper stomach pain. I was dizzy, extremely nauseous and my lips were burning and tingling. By the time we pulled up to the emergency room I couldn't stop throwing up....it was bad. And the pain was so intense I was told I was whimpering. 

They got me in right away and started me on an iv and gave me toradol for the pain and zofran for the vomiting. The doctor wanted to do blood work and an ultrasound because he was concerned it was my gallbladder. Well, everything was fine and it was the gluten, although they couldn't test or confirm it. 

It is day 2 and my lips are still tingly and I still have quite a bit of pain and nausea. I'm extremely tired and weak. 

 I was looking online for people that have had the same or similar reaction and found nothing....am I the only one? 

 Some things I know have helped me and hopefully they can help others....if you've been cross contaminated or "glutenized" as I call it....chew a handful of vitamin c chewables, it helps. Drink LOTS of water. Stick to a bland diet and NO caffeine for a few days to let your stomach heal. Heating pads help and get lots of rest. And there is an amazing product called GI Response, you can buy it on Amazon. It's expensive but you will thank me later. 

 I don't know how long it will take to feel back to "normal", but I have sworn off eating out....I'd swear off eating if I could. Being gluten free sucks. But that's what we've been dealt and so we must deal with it the best we can. 

 I hope that I've helped at least one person.....and if you are unfortunate enough to have the same reaction to gluten as me....know that you aren't alone. 

[Mermaid's Mom]

Could you have a shellfish allergy?  That reaction sounds like my husband when he is exposed to shellfish.  It is a gradual allergy and can get worse with each ingestion so I would not consume shrimp again without being prepared with liquid Benadryl or an epi pen.  Or get tested!

[Posterboy]

2 hours ago, Mermaid's Mom said:

Could you have a shellfish allergy?  That reaction sounds like my husband when he is exposed to shellfish.  It is a gradual allergy and can get worse with each ingestion so I would not consume shrimp again without being prepared with liquid Benadryl or an epi pen.  Or get tested!

Blessedmewith4,

I vote for the shellfish allergy.

I have had friends who had similar shellfish allergy issues and it sounds just like the episode you describe especially the tingling lips.

They don't know what triggers it often.  They may been able to eat shellfish before with no reaction but after the reaction they can't eat shellfish again without risking asphaxiation.

While my friend stops if he accidently consumes shellfish like in sauce for example his luckily is not bad enough to take him to the hospital (now that he knows about it) but it can bee if he doesn't stop as soon as he notices his tingingly lips symptom.

Here is an article/link from FARE (food allergy research and education.org) that list the things that might have triggered your possible shellfish allergy.

https://www.foodallergy.org/allergens/shellfish-allergy

quoting

"There are two kinds of shellfish: crustacea (such as shrimp, crab and lobster) and mollusks (such as clams, mussels, oysters and scallops). Reactions to crustacean shellfish tend to be particularly severe. If you are allergic to one group of shellfish, you might be able to eat some varieties from the other group. However, since most people who are allergic to one kind of shellfish usually are allergic to other types, allergists usually advise their patients to avoid all varieties."

I hope this is helpful.

posterboy,

 

[RVLori]

Before being diagnosed with Celiac, I would occasionally get so sick I would start vomiting, usually after eating out.  After being gluten free for the past 6 years, when I get gluten, it is ugly.  First, I had neck surgery, and the first symptom I get is my neck pain increases dramatically, followed by vomiting, upset stomach, migraine and diarrhea.  It takes days to recover.  Has happened about 6 times in 6 years.  I am extremely careful, but sometimes accidents, usually due to my being careless, gets me.  Then again, my mother and sister developed seafood allergy's later in life that makes them very sick too.  I guess try seafood at home and see.

[Blessedmewith4]

Hello. Thank you all for your comments and input. I definitely do not have a seafood allergy. It is most certainly a gluten reaction. I was just sharing my reaction as I know there are others out there that react the same way and I did not want them to think they were alone. 

[cyclinglady]

23 minutes ago, Blessedmewith4 said:

Hello. Thank you all for your comments and input. I definitely do not have a seafood allergy. It is most certainly a gluten reaction. I was just sharing my reaction as I know there are others out there that react the same way and I did not want them to think they were alone. 

My reactions to gluten exposures have been inconsistent and/or severe with long recovery times.  The only way for me to know for sure if gluten is to blame is to get my antibodies measured, which my GI has gladly ordered in the past.  I would suggest asking for antibodies testing (celiac) in order to confirm or rule out a gluten exposure the next time you become ill and suspect gluten as the culprit.  

[AristotlesCat]

Everyone is different, that sounds like a big reaction. Still I've had some unusual reactions to gluten exposure myself in the past, and even something as seemingly minor as the cramping can get pretty intense. I would definitely agree with cyclinglady that getting the antibodies test soon is a good idea (at the very least you get a data point to have handy should you go to an allergist to rule out the shellfish allergy). While celiac can be very serious and the reaction we get to gluten can be long-lasting, an allergic reaction can be much more dangerous  and like a lot of posters, some of the things you mention make me think that is an additional possibility here. It is also possible you can be having two reactions (you could have been accidentally exposed to gluten but also been exposed to an allergen). I suggest finding a good allergist but mention that you have celiac to them. I would still go to your celiac specialist, just I would see an allergist on top of that to for the sake of being thorough. If you are in the Mass area, I can recommend someone who has been very good about ruling out my other illnesses (like Celiac) when checking for allergies. I am not saying this was an allergic reaction, just allergic reactions are serious enough that I would probably ask about getting some skin tests just to make sure you haven't developed a shell fish allergy or something. Whatever happened it sounds like it was a frightening ordeal. I hope you start feeling better soon. 

[Feeneyja]

I can tell you that my daughter, while not diagnosed with celiac disease, also has a similar reaction:  burning and tingling of arms and legs (usually right side), pain and heaviness across her back, even temporary loss of vision. Gluten, in addition to celiac disease, does have a neurological affect in some. It is thought that the peptides in gluten cross react with Purkinje cell epitopes in the cerebellum as well as anti gliadin antibodies cross reacting with synapsin 1. The results are Ataxia and neuropathy and they can exist in the absence of celiac disease. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

[Victoria1234]

On 3/26/2017 at 1:55 PM, Blessedmewith4 said:

 I have been a diagnosed Celiac for 6 years now. The moment I was diagnosed I have lead a strict gluten free life, I wasn't taking any chances and wanted to feel better.  Over the past 6 years I have never intentionally eaten gluten, but there have been times that I have had cross contamination, especially eating out. 

Yesterday was quite an experience and I've learned from it and upon trying to research it I found nothing....I'm hoping I'm not the only one, although I wouldn't wish this on anyone. 

 About a year ago I found a Chinese restaurant that had an owner who's claim to fame was she had found ways to make just about everything on the menu gluten free. Gluten free Chinese food? Yes please!! I ate there 4 times with no reaction....ahh, life is complete!....until yesterday. I ordered the gluten free potstickers and sweet and sour prawns. 

 About 2 hours later I started feeling really nauseous. The first thing I thought was maybe I got cross contaminated. Then within the hour I told my friend that  I needed to go to the emergency room. I had SEVERE middle back pain and upper stomach pain. I was dizzy, extremely nauseous and my lips were burning and tingling. By the time we pulled up to the emergency room I couldn't stop throwing up....it was bad. And the pain was so intense I was told I was whimpering. 

They got me in right away and started me on an iv and gave me toradol for the pain and zofran for the vomiting. The doctor wanted to do blood work and an ultrasound because he was concerned it was my gallbladder. Well, everything was fine and it was the gluten, although they couldn't test or confirm it. 

It is day 2 and my lips are still tingly and I still have quite a bit of pain and nausea. I'm extremely tired and weak. 

 I was looking online for people that have had the same or similar reaction and found nothing....am I the only one? 

 Some things I know have helped me and hopefully they can help others....if you've been cross contaminated or "glutenized" as I call it....chew a handful of vitamin c chewables, it helps. Drink LOTS of water. Stick to a bland diet and NO caffeine for a few days to let your stomach heal. Heating pads help and get lots of rest. And there is an amazing product called GI Response, you can buy it on Amazon. It's expensive but you will thank me later. 

 I don't know how long it will take to feel back to "normal", but I have sworn off eating out....I'd swear off eating if I could. Being gluten free sucks. But that's what we've been dealt and so we must deal with it the best we can. 

 I hope that I've helped at least one person.....and if you are unfortunate enough to have the same reaction to gluten as me....know that you aren't alone. 

How horribly scary! Have you spoken to your regular doctor about this yet? My doc here and the hospital are linked so I don't need to worry about letting them know, but perhaps you should call and make sure yours was notified.

[Caroline12345678]

Hi Victoria!

I have the exact same severity of reactions to cross contamination! In addition, my gums and lips occasionally swell. Many docs would try to say it was something else beside my celiac. But it always was concluded that gluten had caused the reaction. I as well have been checked into the hospital on several occasions. Crazy how each body reacts differently. It is comforting to know that I am not the only one who reacts so severely. I hope it brings you comfort of knowing that you are not alone as well. Thanks for the post. 

[Silly65]

I have only been glutenized badly once and I too was very sick.  I did not throw up, I did hurt all over like I had a severe case of the flu.  It took about  30 mins. and my heart was pounding and then it stopped beating so hard and I was fine until the next day.  It took about 3 weeks to recovery.  Very tired, brain fog, fainting spells etc.  Terrible Horrible stuff

[Talula]

On 5/20/2017 at 8:37 AM, Victoria1234 said:

How horribly scary! Have you spoken to your regular doctor about this yet? My doc here and the hospital are linked so I don't need to worry about letting them know, but perhaps you should call and make sure yours was notified.

 

On 3/11/2018 at 3:44 PM, Silly65 said:

I have only been glutenized badly once and I too was very sick.  I did not throw up, I did hurt all over like I had a severe case of the flu.  It took about  30 mins. and my heart was pounding and then it stopped beating so hard and I was fine until the next day.  It took about 3 weeks to recovery.  Very tired, brain fog, fainting spells etc.  Terrible Horrible stuff

I just joined this site as I have been diagnosed with Celiac disease for the last 10 years or so. Had the blood work and the endoscopy and there was no doubt that I have celiac disease. I too, have been careful but every now and then I slip up, particularly dining out, as not all places truly understand the difference between people choosing it as a lifestyle choice and those of us that have the disease.  My reaction to wheat or gluten once I started my strict gluten free diet has always been violent vomiting and, not to be too graphic, severe burning diarrhea. I know after a couple of hours. I start to get a mild headache, then my face gets hot and I get nauseated. Most times I am sitting on the toilet with the waste basket in my lap because I cannot control either end.  I get violent cramping and I usually vomit at least 4 to 5 times. What helps me the most is water, water, and more water so I have something to keep throwing up. Once I’m done, I get the shakes and feel really cold. It takes me a few hours to warm up, then I’m pretty much exhausted but I feel ok once I’ve purged everything out of my system. 

I have never went to the hospital afterward but I sometimes worry how much these slip ups set me back.  Does an acute exposure cause lots of damage similar to repeated exposure before being diagnosed?  My apologies for the long entry but it is a bit comforting to know that I am not the only one this happens to. I just had a slip up recently on vacation. I ordered the gluten-free burger on the menu which came with lettuce around it, no bun, and the server talked about how she has a friend that is celiac and knows all about it. There must have been bread crumbs or some other filler in the patty. 2 hours later I was sick and it was again very violent.  It scared me enough that I starting searching to see if this was an abnormal reaction and came across this site.