Severe vomiting after eating gluten

[gatlint]

I am wondering how rare it is to experience severe vomiting after eating gluten.  My daughter was diagnosed with Celiac disease at age 3.  She is now 16, and we have only had a few incidents where she has accidentally eaten gluten.  Each time she starts throwing up within 2 hours and has vomitting episodes every few minutes for hours, with severe stomach cramping and spasms.  The last time we went to the hospital, and the staff was skeptical that it was from gluten.  They acted as if her symptoms were not typical of gluten exposure in a celiac patient.  

[plumbago]

5 minutes ago, gatlint said:

I am wondering how rare it is to experience severe vomiting after eating gluten.  My daughter was diagnosed with Celiac disease at age 3.  She is now 16, and we have only had a few incidents where she has accidentally eaten gluten.  Each time she starts throwing up within 2 hours and has vomitting episodes every few minutes for hours, with severe stomach cramping and spasms.  The last time we went to the hospital, and the staff was skeptical that it was from gluten.  They acted as if her symptoms were not typical of gluten exposure in a celiac patient.  

Hi,

I can't really answer your question about how rare it is to experience vomiting after eating gluten, but I know in celiac disease generally, vomiting can be and is a symptom, with different reasons - ie, delayed gastric emptying; vitamin deficiency; among others. My understanding is not broad or deep enough to write very much more on this, but I can say that hospital staff are very likely not familiar with celiac disease and, pressed for time as they are, may be somewhat skeptical of it. There's more to say on that front, but for now that may be enough. I wish I had more to add, but maybe others will weigh in.

[trents]

Your daughter's experience is exactly mine. If I get a gluten exposure when eating it takes about two hours for me to start vomiting and it lasts for 2-3 hours with severe gastritis and cramping. When this passes I then get diarrhea for about the same amount of time. Remember, with celiac disease, the body is interpreting gluten as a toxic invader and is trying to purge it from the digestive system. After being gluten free for some years I found I had lost all tolerance for gluten and my gut would react violently like this to a gluten exposure. When this happens the cramping and pain are so severe I feel like I want to die and get it over with.

[gatlint]

14 minutes ago, trents said:

Your daughter's experience is exactly mine. If I get a gluten exposure when eating it takes about two hours for me to start vomiting and it lasts for 2-3 hours with severe gastritis and cramping. When this passes I then get diarrhea for about the same amount of time. Remember, with celiac disease, the body is interpreting gluten as a toxic invader and is trying to purge it from the digestive system. After being gluten free for some years I found I had lost all tolerance for gluten and my gut would react violently like this to a gluten exposure. When this happens the cramping and pain are so severe I feel like I want to die and get it over with.

Have you found anything that helps alleviate the pain or vomitting? This last time, we went to the hospital, as this is the first episode since being diagnosed with type 1 diabetes (and the severe vomitting constitutes a diabetic emergency).  They gave her iv nausea meds and fluids.  This helped, but she had already vomitted approximately a dozen times by the time they administered the medicine.

[trents]

No. I don't see how I could keep anything on my stomach during such times to serve as a remedy. It would have to be something injectable or IV.

Edited October 7, 2021 by trents

[gatlint]

31 minutes ago, trents said:

No. I don't see how I could keep anything on my stomach during such times to serve as a remedy. It would have to be something injectable or IV.

Very true, the iv did provide relief and kept her from being too dehydrated.  We will just hope for no more accidental exposures!  Thank you!

[trents]

5 minutes ago, gatlint said:

Very true, the iv did provide relief and kept her from being too dehydrated.  We will just hope for no more accidental exposures!  Thank you!

It is likely to happen once in a while no matter how scrupulous you are about avoiding gluten. One of the best ways to avoid accidental glutening is to have everyone in the family commit to eating gluten free and then purge the entire kitchen and pantry of everything that is not gluten free. Also, avoid eating out like the plague.

[gatlint]

3 minutes ago, trents said:

It is likely to happen once in a while no matter how scrupulous you are about avoiding gluten. One of the best ways to avoid accidental glutening is to have everyone in the family commit to eating gluten free and then purge the entire kitchen and pantry of everything that is not gluten free. Also, avoid eating out like the plague.

Yes, she is very good about it.  It was a friend's house.  The mom thought buns were gluten free, but they were keto.  Next time she will know to read ingredients herself.  

[cristiana]

1 hour ago, trents said:

Your daughter's experience is exactly mine. If I get a gluten exposure when eating it takes about two hours for me to start vomiting and it lasts for 2-3 hours with severe gastritis and cramping. When this passes I then get diarrhea for about the same amount of time. Remember, with celiac disease, the body is interpreting gluten as a toxic invader and is trying to purge it from the digestive system. After being gluten free for some years I found I had lost all tolerance for gluten and my gut would react violently like this to a gluten exposure. When this happens the cramping and pain are so severe I feel like I want to die and get it over with.

Trents... this is me, too, after being gluten free for some years I have lost tolerance too.

I was diagnosed about eight years ago and for some years after diagnosis my symptoms were relatively mild.  However,  at Christmas I was given a large slice of normal cake and vomited within 2-3 hours (first time I've vomited since I was a child), with awful chills.  I couldn't stand up.  I knew it was glutening and nothing else because I had felt the same way before after eating smaller amounts, but this was the first time I'd actually vomited.   I felt a bit "travel sick" for some days afterwards - a bit sick and dizzy.

So I searched the internet and found a really good article that said it isn't uncommon after a big gluten hit to react this way.  Not sure where the article has gone but here is a similar one.    

https://celiac.org/glutenexposuremarkers/

Edited October 7, 2021 by cristiana

[trents]

Yes, I forgot to mention that when this happens to me I also get chills.

[gatlint]

10 minutes ago, trents said:

Yes, I forgot to mention that when this happens to me I also get chills.

She does as well.  I assumed it was from the fever due to dehydration.

[trents]

6 minutes ago, gatlint said:

She does as well.  I assumed it was from the fever due to dehydration.

It could be from dehydration but not necessarily. My chills come on well before I get to the dehydration point. I think chills can be a reaction to any number of things. When I get nausea I get sweaty and the chills could just be due to rapid surface temperature drop from evaporation. Or, some other physiological mechanism that is coming into play like infection control. The body may be misinterpreting the nausea as being caused by a gut infection.

Edited October 7, 2021 by trents

[cristiana]

My chills seem to start up just as I begin to feel sick.   

I have developed a bizarre reaction to broccoli in recent years where I get chills and feel sick within two hours of eating it.  Fortunately broccoli is easier to spot than gluten! 

[trents]

Just now, cristiana said:

My chills seem to start up just as I begin to feel sick.   

I have developed a bizarre reaction to broccoli in recent years where I get chills and feel sick within two hours of eating it.  Fortunately broccoli is easier to spot than gluten! 

You could join the George W. Bush anti broccoli club! Ex U.S. president George W. Bush was criticized by the Broccoli Growers Association because he said he didn't eat broccoli. His response was, "Listen! I'm the president of the United States of America and if I don't want to eat broccoli I don't have to!"

[cristiana]

The weird thing is I used to be able to eat it all the time - with no problems, I actually really like it.

I have been very much reminded of George Bush's least favourite vegetable these last few days with the BBC constantly showing interviews with someone called Barbara Broccoli.   Something to do with James Bond, apparently.   

With apologies for the off-topic detour.

[Jude13]

On 10/7/2021 at 9:31 AM, cristiana said:

Trents... this is me, too, after being gluten free for some years I have lost tolerance too.

I was diagnosed about eight years ago and for some years after diagnosis my symptoms were relatively mild.  However,  at Christmas I was given a large slice of normal cake and vomited within 2-3 hours (first time I've vomited since I was a child), with awful chills.  I couldn't stand up.  I knew it was glutening and nothing else because I had felt the same way before after eating smaller amounts, but this was the first time I'd actually vomited.   I felt a bit "travel sick" for some days afterwards - a bit sick and dizzy.

So I searched the internet and found a really good article that said it isn't uncommon after a big gluten hit to react this way.  Not sure where the article has gone but here is a similar one.    

https://celiac.org/glutenexposuremarkers/

I have also experience severe stomach cramping and spasms. I often have to decide if I putting my head in the toilet to vomit or my butt for the horrible painful diarrhea. I get very cold and have cold sweats. This happens with even minimal exposure. 

[trents]

26 minutes ago, Jude13 said:

I have also experience severe stomach cramping and spasms. I often have to decide if I putting my head in the toilet to vomit or my butt for the horrible painful diarrhea. I get very cold and have cold sweats. This happens with even minimal exposure. 

Ha, Ha, Hee, Hee! Good one! 😅

[BobbieB]

My husband was diagnosed in 2013.  He has navigated the gluten free waters fairly well.  His early symptoms were the dermatitis herpetiformis (DH).  Took over a year to diagnose.  We eat out quite a bit and he manages well.  But now when he is exposed, he is severely ill.  He is upstairs vomiting and miserable at the moment.  We've been to this restaurant several times lately.  Now it's off the list again.  Just not worth the misery he is in at the moment.   Took about 2 1/2 hours before it hit him.   I guess this is a sign we are doing a good job of keeping him clean 99% of the time, but never thought about him losing what tolerance he did have.   Prayers to all of you suffering through these moments.

[trents]

42 minutes ago, BobbieB said:

My husband was diagnosed in 2013.  He has navigated the gluten free waters fairly well.  His early symptoms were the dermatitis herpetiformis (DH).  Took over a year to diagnose.  We eat out quite a bit and he manages well.  But now when he is exposed, he is severely ill.  He is upstairs vomiting and miserable at the moment.  We've been to this restaurant several times lately.  Now it's off the list again.  Just not worth the misery he is in at the moment.   Took about 2 1/2 hours before it hit him.   I guess this is a sign we are doing a good job of keeping him clean 99% of the time, but never thought about him losing what tolerance he did have.   Prayers to all of you suffering through these moments.

Not only do we lose tolerance over time after going gluten free but restaurants are likely going to be inconsistent with the precautions they take concerning cross contamination. It will probably vary from one day to another and one shift to another. Studies have shown that eating out is the number one sabotaging factor to our efforts to eat gluten free. The studies show  that most people who claim to be eating gluten free are really practicing a low gluten diet and that was especially true among those still dining out.

Edited December 11, 2021 by trents

[gatlint]

We have been lucky with restaurants, but I am admittedly an annoying customer. My daughter was so young when she was diagnosed, I don't know if she ever really had much of a tolerance. She has only accidentally eaten gluten a few times, but since she got diagnosed with type 1 Diabetes, vomiting can be dangerous. The last time she got gluten at a friend's house, they realized their mistake so we went to the er. I have to say that iv meds and fluids are the way to go when that happens. They immediately stopped the vomiting and kept her from getting dehydrated. Unfortunately when dealing with an er, they aren't quite fast enough. But once they started iv, it was much better. I hope this helps!

[Sugarboo]

On 12/11/2021 at 12:25 AM, gatlint said:

We have been lucky with restaurants, but I am admittedly an annoying customer. My daughter was so young when she was diagnosed, I don't know if she ever really had much of a tolerance. She has only accidentally eaten gluten a few times, but since she got diagnosed with type 1 Diabetes, vomiting can be dangerous. The last time she got gluten at a friend's house, they realized their mistake so we went to the er. I have to say that iv meds and fluids are the way to go when that happens. They immediately stopped the vomiting and kept her from getting dehydrated. Unfortunately when dealing with an er, they aren't quite fast enough. But once they started iv, it was much better. I hope this helps!

Hi

i can’t recall how I got to this forum but I started to read the thread and had to comment. I’m 57, type 1 diabetic for 47 years.. Always ate healthy but did eat a lot of sweets. When I was 19, I ate almost a whole bottle of Planters dry roasted peanuts while driving home from work one day. Within a few hours I started to feel sick and when I layed down for bed at 9pm, my stomach kept blowing up like a ballooon so I would sit up for a minute, amd then let out a huge gross burp thst smelled like rotten eggs( sulfur). 
This continued for many hours all night. So after that first episode, I would get sick about 3-4 times a year with one burp and a very heavy feeling in my stomach and a feeling that my food was not being digested all day.. As soon as that one burp happened, I would get nauseous, amd then came the throwing up.. It was like all the food o had eaten for a week, started to come up.. These episodes were so violent and made me so sick, that on several occasions I almost died. The Emergency room never knew how to help me.. This went on my whole life until about 7 years ago. I’ll skip over everything I did to fix the problem, but what I figured out was that I had a huge flare up from the bacteria Helio Pylori, or H. Pylori. 
the one thing that finally put a stop to these violent episodes for most of my life( 37 years!), was the supplement called “ Oil of Oregano”. 2 drops in a gelatin capsules first thing in the morning and 2 drops in a gelatin capsule right before bed. 
After about 2 weeks, I felt incredible , like never in my life, and THANK GOD ABOVE”! , I never had it again. I’ve read we all have H.Pylori in our gut and certain things make it get out of control and overpopulate our gut. Now, if I feel anything close to that coming on, o immediately take 2 drops of the oil of oregano and within the 1/2 hour it goes away. Since your daughter has been diagnosed with Type 1 diabetes, I imagine she is also having a flair up of h.pylori, because they feed off of carbohydrates and anything with sugar: cookies, desserts, sweets, fruit, etc. , and lots of people with diabetes have the problem. Oil of oregano is a natural antibiotic.  Whatever you do, try not to let your daughter take a lot of antibiotics. I took them 3-4 times a year my whole life and it ruined my gut. All the good microbes were killed off and I have extreme problems amd can only eat a few things because everything leaks out of my intestinal track amd gives me a reaction of some kind.  The good microbes that were killed, are what keeps the gut lining healthy so the good microbes can proliferate, and keep bad microbes/bacteria away, and therefore  keep us healthy. One of the best things you can eat is Organic dark green( completely unripe) bananas.. 1/2 cup in a smoothie with whatever you can tolerate it in, will feed the good microbes and keep you super healthy.,” They contain a resistant starch. Please read up on “ resistant starches”. Great for diabetics and everyone. Ok so sorry this is so long. I wish I could share all I know. I’ve been through a lot, and it was me who figured it all out. The doctors usually don’t know anything amd can’t help..thank God For the internet and sites like PubMed!

 

[gatlint]

1 hour ago, Sugarboo said:

Hi

i can’t recall how I got to this forum but I started to read the thread and had to comment. I’m 57, type 1 diabetic for 47 years.. Always ate healthy but did eat a lot of sweets. When I was 19, I ate almost a whole bottle of Planters dry roasted peanuts while driving home from work one day. Within a few hours I started to feel sick and when I layed down for bed at 9pm, my stomach kept blowing up like a ballooon so I would sit up for a minute, amd then let out a huge gross burp thst smelled like rotten eggs( sulfur). 
This continued for many hours all night. So after that first episode, I would get sick about 3-4 times a year with one burp and a very heavy feeling in my stomach and a feeling that my food was not being digested all day.. As soon as that one burp happened, I would get nauseous, amd then came the throwing up.. It was like all the food o had eaten for a week, started to come up.. These episodes were so violent and made me so sick, that on several occasions I almost died. The Emergency room never knew how to help me.. This went on my whole life until about 7 years ago. I’ll skip over everything I did to fix the problem, but what I figured out was that I had a huge flare up from the bacteria Helio Pylori, or H. Pylori. 
the one thing that finally put a stop to these violent episodes for most of my life( 37 years!), was the supplement called “ Oil of Oregano”. 2 drops in a gelatin capsules first thing in the morning and 2 drops in a gelatin capsule right before bed. 
After about 2 weeks, I felt incredible , like never in my life, and THANK GOD ABOVE”! , I never had it again. I’ve read we all have H.Pylori in our gut and certain things make it get out of control and overpopulate our gut. Now, if I feel anything close to that coming on, o immediately take 2 drops of the oil of oregano and within the 1/2 hour it goes away. Since your daughter has been diagnosed with Type 1 diabetes, I imagine she is also having a flair up of h.pylori, because they feed off of carbohydrates and anything with sugar: cookies, desserts, sweets, fruit, etc. , and lots of people with diabetes have the problem. Oil of oregano is a natural antibiotic.  Whatever you do, try not to let your daughter take a lot of antibiotics. I took them 3-4 times a year my whole life and it ruined my gut. All the good microbes were killed off and I have extreme problems amd can only eat a few things because everything leaks out of my intestinal track amd gives me a reaction of some kind.  The good microbes that were killed, are what keeps the gut lining healthy so the good microbes can proliferate, and keep bad microbes/bacteria away, and therefore  keep us healthy. One of the best things you can eat is Organic dark green( completely unripe) bananas.. 1/2 cup in a smoothie with whatever you can tolerate it in, will feed the good microbes and keep you super healthy.,” They contain a resistant starch. Please read up on “ resistant starches”. Great for diabetics and everyone. Ok so sorry this is so long. I wish I could share all I know. I’ve been through a lot, and it was me who figured it all out. The doctors usually don’t know anything amd can’t help..thank God For the internet and sites like PubMed!

 

Thank you so much!  The vomitting I posted about was a reaction to gluten.  She had the same reaction before she was diabetic to gluten.  It is pretty quick and consistent.  She does, however get horrible stomach aches, seemingly unrelated to anything.  These started a few months before she was diagnosed with diabetes (so, she was probably already diabetic, just undiagnosed).  How do you test for H. pylori?  It is definitely something I will ask her doctor to do.  Of course, none of them have ever mentioned it.  Then again, I had to ask for her to be tested for celiac when she was 3, and diabetes when she was 14.  Low and behold, I was right both times.  

[plumbago]

8 minutes ago, gatlint said:

Thank you so much!  The vomitting I posted about was a reaction to gluten.  She had the same reaction before she was diabetic to gluten.  It is pretty quick and consistent.  She does, however get horrible stomach aches, seemingly unrelated to anything.  These started a few months before she was diagnosed with diabetes (so, she was probably already diabetic, just undiagnosed).  How do you test for H. pylori?  It is definitely something I will ask her doctor to do.  Of course, none of them have ever mentioned it.  Then again, I had to ask for her to be tested for celiac when she was 3, and diabetes when she was 14.  Low and behold, I was right both times.  

Good for you!

There are a couple of ways to test for H. Pylori, including a breath test, via urine, serum, and stool; and gastric tissue biopsy.

[gatlint]

32 minutes ago, plumbago said:

Good for you!

There are a couple of ways to test for H. Pylori, including a breath test, via urine, serum, and stool; and gastric tissue biopsy.

Thank you so much!  This information is quite helpful.  I do a lot of research, but have never stumbled across this topic.

[plumbago]

6 minutes ago, gatlint said:

Thank you so much!  This information is quite helpful.  I do a lot of research, but have never stumbled across this topic.

The breath test, from what I've heard, is common. I had some abdominal issues 2 years ago and was due for my EGD (and colo   :() anyway, and the doc checked my gut out at that time for H Pylori and didn't find it.