Nausea and Vomiting Are Key Symptoms of Gluten Exposure in Celiac Patients

I do the same with Barley, Oats, and Rye.

On 2/25/2020 at 1:10 PM, Fenrir said:

I know my primary symptom now directly after eating gluten is vomiting. It's almost like clockwork, 3 hrs after I eat gluten I get very nauseous and usually throw up and feel terrible for a day or two. 

I have the same thing, but feel almost completely fine when the vomiting is overwith.  Can you tell me what FODMAP is?

I'm so thankful for research like this - thanks for reporting on it.

~

My daughter's main symptoms have always been nausea and vomiting, even before going gluten-free. She was admitted to hospital for intractable vomiting and weight loss and they misdiagnosed her with a rare eating disorder - ARFID. The gastroenterologist had scheduled her for an upper endoscopy, but cancelled it as the lead pediatrician decided that her symptoms were psychogenic. He and the psychiatrist said that 'only 1% of the population has Celiac so we don't think it is that' - even though ARFID is much more rare (perhaps they need to teach the principles of Baysian inference in medical school) . The antibody test results came back after 10 days, at which point she had already been transferred to the eating disorders unit at another hospital. The EDU was SuperMax for 80 lbs teenage girls - or in her case, more like GitMo as they 'treated' her by forcing her to eat things that made her throw up. Since she had an NG tube they watched her shower and use the bathroom because apparently she might somehow rip it out and make an noose and hang herself in under 5 minutes. She would throw up her feeding tube and since she was on PPIs they had to X-ray her to confirm the position (for some reason they could not simply write down the appropriate tube length for next time it happened). They would sometimes x-ray her 3 times for one insertion. 

I could go on, there were more horrors (adverse drug reactions, moron (sadistic?) dietician, etc.). Finally we had her released when the kitchen glutened her and thankfully the nurses on duty did not try to cover up the mistake. They were embarrassed enough (or fearful of a lawsuit) to release her to our care - no calls to CPS or anything (there had been hints of accusations of 'Munchausen by proxy'). She had still been vomiting frequently at the hospital despite being on zofran and ativan, so there was some question as to whether we could handle the situation at home. I had found an article - a set of case reports - in PubMed on the successful use of a low-histamine diet in children with intractable vomiting. So we tried that, as well as being completely gluten-free (no gluten in the house). She vomited once the day after her return home and not since. I suspect a mast cell issue in addition to Celiac, so I took her to a mast cell specialist who diagnosed her with Oral Allergy Syndrome. There's a lot of overlap between her OAS 'no' list and low histamine 'no' list, so I think that's primarily how the low histamine diet helped her, but a low histamine diet can reduce allergy symptoms as well.

At home, she managed to regain her weight over four months (18 lbs). She's off zofran and ativan now, and only occasionally has bouts of nausea. She still has pretty extreme fatigue. Her severe menstrual cramps have improved a bit (caused by, I think, too much oxytocin release which is mediated through mast cell activation. I suspect her hypothalamus is screwed up).

She is an ovo-lacto vegetarian for ethical reasons. Between Celiac, OAS, trying to avoid too much arsenic from rice, and vegetarianism - it is very hard to manage her diet. I have thought she may improve further on a low FODMAP diet (she has had stool testing and has gut dysbiosis - not surprising), but I don't think I can come up with a diet plan that meets basic nutritional needs and checks all the those boxes.

This has all been and still is very overwhelming.

8 minutes ago, Rhyo9 said:

I'm so thankful for research like this - thanks for reporting on it.

~

My daughter's main symptoms have always been nausea and vomiting, even before going gluten-free. She was admitted to hospital for intractable vomiting and weight loss and they misdiagnosed her with a rare eating disorder - ARFID. The gastroenterologist had scheduled her for an upper endoscopy, but cancelled it as the lead pediatrician decided that her symptoms were psychogenic. He and the psychiatrist said that 'only 1% of the population has Celiac so we don't think it is that' - even though ARFID is much more rare (perhaps they need to teach the principles of Baysian inference in medical school) . The antibody test results came back after 10 days, at which point she had already been transferred to the eating disorders unit at another hospital. The EDU was SuperMax for 80 lbs teenage girls - or in her case, more like GitMo as they 'treated' her by forcing her to eat things that made her throw up. Since she had an NG tube they watched her shower and use the bathroom because apparently she might somehow rip it out and make an noose and hang herself in under 5 minutes. She would throw up her feeding tube and since she was on PPIs they had to X-ray her to confirm the position (for some reason they could not simply write down the appropriate tube length for next time it happened). They would sometimes x-ray her 3 times for one insertion. 

I could go on, there were more horrors (adverse drug reactions, moron (sadistic?) dietician, etc.). Finally we had her released when the kitchen glutened her and thankfully the nurses on duty did not try to cover up the mistake. They were embarrassed enough (or fearful of a lawsuit) to release her to our care - no calls to CPS or anything (there had been hints of accusations of 'Munchausen by proxy'). She had still been vomiting frequently at the hospital despite being on zofran and ativan, so there was some question as to whether we could handle the situation at home. I had found an article - a set of case reports - in PubMed on the successful use of a low-histamine diet in children with intractable vomiting. So we tried that, as well as being completely gluten-free (no gluten in the house). She vomited once the day after her return home and not since. I suspect a mast cell issue in addition to Celiac, so I took her to a mast cell specialist who diagnosed her with Oral Allergy Syndrome. There's a lot of overlap between her OAS 'no' list and low histamine 'no' list, so I think that's primarily how the low histamine diet helped her, but a low histamine diet can reduce allergy symptoms as well.

At home, she managed to regain her weight over four months (18 lbs). She's off zofran and ativan now, and only occasionally has bouts of nausea. She still has pretty extreme fatigue. Her severe menstrual cramps have improved a bit (caused by, I think, too much oxytocin release which is mediated through mast cell activation. I suspect her hypothalamus is screwed up).

She is an ovo-lacto vegetarian for ethical reasons. Between Celiac, OAS, trying to avoid too much arsenic from rice, and vegetarianism - it is very hard to manage her diet. I have thought she may improve further on a low FODMAP diet (she has had stool testing and has gut dysbiosis - not surprising), but I don't think I can come up with a diet plan that meets basic nutritional needs and checks all the those boxes.

This has all been and still is very overwhelming.

~

Just want to add  - her OAS is birch, grass and mugwort. The allergic reactions to foods is the result of cross-reactivity to the allergens in those plants. Somehow, the mechanism is not clear, there is enough cross-linking to degranulate mast cells elicited from exposure to proteins that are kind of similar to those in birch, grass, and mugwort. Due to her tendency to cross-reactivity, out of an abundance of caution she's also avoiding oats (even gluten-free certified) since avidin is similar to gluten. I wish I knew for certain if this is necessary or not.

My doctor told me I have celiac disease.  I have not seen a GI doctor yet because of the lockdown.  My appt was cancelled.  My issue is I feel nauseous after eating.  If I eat a lot, the more I feel it but I don’t throw up.  I feel nauseous too when I wake up in the middle of the night.  Is this normal? 

Within 30 minutes, I know I have eaten gluten.  A mild panic ensues and wondering what had it and how much gluten is it.  Within 2-3 hours I start vomiting continually every 15 mins. When no food is left to vomit, I then keep dry heaving. I also get severe migraine, horrendous stomach pains & chills. This lasts up to 8 hours or so, so I am bed ridden & feel totally ghastly & weak.The extreme tiredness lasts around 2 days.   If the amount of gluten is small enough, drinking psyllium husk helps reduce the effects, if it's enough gluten to throw up then it's no help.

On 3/4/2020 at 8:10 AM, Mr. Pep'r said:

I would be interested in a study that looks into the time after ingesting gluten to the point of nausea and vomiting. 

Because until recently I too thought that when I was nauseous and vomiting after eating a meal, the last meal would be the blame for gluten exposure.  But after 3 separate experiences my understanding quickly changed. 

The first time was after eating at a so called "safe" establishment.  After telling the server about my Celiac Disease the rice they served was pilaf.  After taking several bits I thought something was wrong, and I asked what kind of rice dish it was.  I was told rice pilaf!  Since I've already eaten it, I had more, to see what my reaction would be.  When we arrived home, I felt absolutely fine.  When I woke up the next morning I felt absolutely fine.  I was actually thinking maybe I was beating the severe reactions once experienced.  By mid afternoon I was starting to feel fatigued, and round diner time the wicked headache showed up.  The food I ate that evening was from home, and without a doubt 100% gluten-free, and within 3 hours or so after eating, I spent the entire night throwing up.

This happened two other times, once with a frozen burrito that had the exact same colored packaging as the gluten-free version, and 24 hours later, I was throwing up the meal I just ate.  And again at an establishment that was "safe" for those with Celiac Disease while I was without a doubt eating 100% gluten-free the day of and prior, again 24 hours later, I was throwing up.

Maybe the reaction is just me, maybe it is not.  But like others, after throwing up a meal, I would always blame that last meal.  But after my not so controlled scientific experiments I quickly realized there's a lot more to our immune systems.  Kind of like that door knob that had the cold or flue virus on it, we don't see the immune response to the virus 3 hours after touching the knob and exposing ourselves, it's more like 24-72 hours later, after our immune systems kicks into gear.  Maybe it's the same for those of us with Celiac Disease?

* I was diagnosed with Celiac Disease 13 years ago.

So I was always told vomiting from celiac was only for small children and that the t cells don't respond that quickly. That is why they always say it will be mainly lower digestion issues. But when I have been accidentally exposed to gluten i'll get nauseous in about 30mins to an hour and then vomit. In the past this has vomiting has only lasted a for a minute or two. But about a week ago I had another accidental exposure and this time I would vomit every 15-20 minutes for over 4 hours until absolutely everything was gone. It was miserable and I was weak until the next day. You asked for a study.  Well your wish is my command. Here is a recently published study. 

https://celiac.org/glutenexposuremarkers/

In this study they stated that t cells can react almost instantly. My question for all of you is when the vomiting stops how do you get rid of this terrible acid reflux? I have had this for over a week now and think it is attributed to low hcl because i vomited everything up.

On 5/19/2020 at 10:32 PM, Guest Cranky Pants said:

Within 30 minutes, I know I have eaten gluten.  A mild panic ensues and wondering what had it and how much gluten is it.  Within 2-3 hours I start vomiting continually every 15 mins. When no food is left to vomit, I then keep dry heaving. I also get severe migraine, horrendous stomach pains & chills. This lasts up to 8 hours or so, so I am bed ridden & feel totally ghastly & weak.The extreme tiredness lasts around 2 days.   If the amount of gluten is small enough, drinking psyllium husk helps reduce the effects, if it's enough gluten to throw up then it's no help.

If I was exposed to gluten in the past I would only vomit once and be done. But now it is like you stated. Do you get severe acid reflux for a week after the episode? I can't shake this acid reflux and think it is because I emptied out my HCL. Any suggestions? 

For me, the nausea, emesis and diarrhea happen reliably 2-3 hours after consuming a significant amount of gluten, like 2-3 wheat biscuits that I ate by mistake because they looked no different than the gluten-free ones my wife made for me. This makes sense to me because that is about how long it takes for the contents of the stomach to move to the small bowel after eating.

On 3/8/2020 at 12:13 PM, Rhyo9 said:

 

This sounds terrible. You must have been infuriated at the doctors! I have Celiac and the condition is getting progressively worse. Our family cuts out gluten and most dairy. I try to stay away from oats even when CGF because they bring discomfort. Probably because of the protein like you stated. I had a recent accidental exposure that resulted in nausea and 4 hours of vomiting. Now I can't shake this acid reflux. I have been recommended to go on a vegetarian diet until my HCL normalizes. I already struggle with low weight and don't know what to do. I don't know how vegetarians feel full... But I know that if I let this acid reflux persist, which is caused by proteins and fats, then other things will get worse. I feel so much better when I remove meats or just have fish once a day but again how do you get full! I wonder if my daughter has something similar to what your child has. My daughter has episodes of cyclical vomiting and severe fatigue. She rarely eats gluten and we cannot pin down what causes her vomiting episodes. She has not started her cycle yet because she is too young. But we have not considered the histamine factor. We did suspect she had fpies when she had a terrible vomiting episode to soy. Open Original Shared Link

Please provide any resources. I just don't know what to eat lol. Air is safe, right?

On 3/4/2020 at 8:10 AM, Mr. Pep'r said:

I would be interested in a study that looks into the time after ingesting gluten to the point of nausea and vomiting. 

Because until recently I too thought that when I was nauseous and vomiting after eating a meal, the last meal would be the blame for gluten exposure.  But after 3 separate experiences my understanding quickly changed. 

The first time was after eating at a so called "safe" establishment.  After telling the server about my Celiac Disease the rice they served was pilaf.  After taking several bits I thought something was wrong, and I asked what kind of rice dish it was.  I was told rice pilaf!  Since I've already eaten it, I had more, to see what my reaction would be.  When we arrived home, I felt absolutely fine.  When I woke up the next morning I felt absolutely fine.  I was actually thinking maybe I was beating the severe reactions once experienced.  By mid afternoon I was starting to feel fatigued, and round diner time the wicked headache showed up.  The food I ate that evening was from home, and without a doubt 100% gluten-free, and within 3 hours or so after eating, I spent the entire night throwing up.

This happened two other times, once with a frozen burrito that had the exact same colored packaging as the gluten-free version, and 24 hours later, I was throwing up the meal I just ate.  And again at an establishment that was "safe" for those with Celiac Disease while I was without a doubt eating 100% gluten-free the day of and prior, again 24 hours later, I was throwing up.

Maybe the reaction is just me, maybe it is not.  But like others, after throwing up a meal, I would always blame that last meal.  But after my not so controlled scientific experiments I quickly realized there's a lot more to our immune systems.  Kind of like that door knob that had the cold or flue virus on it, we don't see the immune response to the virus 3 hours after touching the knob and exposing ourselves, it's more like 24-72 hours later, after our immune systems kicks into gear.  Maybe it's the same for those of us with Celiac Disease?

* I was diagnosed with Celiac Disease 13 years ago.

Thank you for sharing and helping me not feel crazy!!  I've been trying to analyze my situation and your experience is similar to mine.  There have been times I know I haven't eaten gluten and yet, 2.5 to 3 hours after eating, I vomit.  I assumed the damage done to my small intestine after years of consuming gluten was causing my periodic vomiting.  I've only been gluten-free for six months and I don't vomit on a regular basis.  It seems random now and even was for the prior two years before I was diagnosed.  I have so much to learn!

On 7/29/2020 at 1:14 AM, Guest Celiac is my super power said:

This sounds terrible. You must have been infuriated at the doctors! I have Celiac and the condition is getting progressively worse. Our family cuts out gluten and most dairy. I try to stay away from oats even when CGF because they bring discomfort. Probably because of the protein like you stated. I had a recent accidental exposure that resulted in nausea and 4 hours of vomiting. Now I can't shake this acid reflux. I have been recommended to go on a vegetarian diet until my HCL normalizes. I already struggle with low weight and don't know what to do. I don't know how vegetarians feel full... But I know that if I let this acid reflux persist, which is caused by proteins and fats, then other things will get worse. I feel so much better when I remove meats or just have fish once a day but again how do you get full! I wonder if my daughter has something similar to what your child has. My daughter has episodes of cyclical vomiting and severe fatigue. She rarely eats gluten and we cannot pin down what causes her vomiting episodes. She has not started her cycle yet because she is too young. But we have not considered the histamine factor. We did suspect she had fpies when she had a terrible vomiting episode to soy. Open Original Shared Link

Please provide any resources. I just don't know what to eat lol. Air is safe, right?

 

I wish I knew what would help you. I don't have Celiac - but what has helped me with GERD is cruciferous vegetables - broccoli sprouts and cabbage juice. The fiber from cruciferous veg can be difficult to digest, but the other compounds - most likely isothiocyanates (e.g.,  sulforaphane) and indoles - seem to have helped me and there is medical research showing them promoting gut motility and suppressing H. pylori (I tested negative for H. pylori, but I figure if sulforaphane can suppress H. pylori, perhaps it helps normalize the gut microbiome generally). I'm not sure, though, if they would be hard on your stomach. My daughter can't  have raw cruciferous veg due to her Oral Allergy Syndrome.

From what I've read, cyclical vomiting can have a number of causes - sometimes it's due to problems with metabolism. I found a doctor in Atlanta - Cynthia Rudert -  I thought she might be able to help my daughter, but I did not make an appt. since traveling when she was first released from the hospital and so underweight was not an option, and then she had school,  and now there's the pandemic.