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

Hello Robsimonroberts

Welcome to the forum, but I am sorry to hear your wife is going through so much.  As a relatively newly recruited Moderator on this forum, I'd ideally like to move this post so you can start a new thread - but I lack this particular skill at present!  But do feel free to do so yourself.

Meanwhile, I live in the UK so sympathise as the NHS is under a great deal of pressure at the moment and it is a difficult time to be going through medical uncertainty.

My own diagnosis took some time.   I was finally diagnosed a few years ago after a raft of bizarre symptoms (migraines, ulcers, numbness, tingling, clinical anxiety, hallucinations on waking, anemia... and lastly gastric symptoms which finally pointed to coeliac disease).  Subsequently I was referred to a nutritionalist, who told me celiac disease is a great mimicker and the symptoms can be so widespread and general that it can be difficult for a health professional to arrive at a diagnosis straight away.  Also, sometimes celiac disease symptoms take a while to settle after adopting a gluten free lifestyle so it isn't always obvious straight away if all presenting symptoms are down purely to gluten consumption.  

Re: the MRI findings, do you know where the lesions were?  I am by no means an expert in these things but I do recall past posts on this forum where it was mentioned that MRIs can show certain changes in coeliacs, but I need one of my colleagues here to chime in as to what these are.   I also understand migraine sufferers can have unusual MRIs.  But the vertigo you describe can be down to coeliac disease.  Certainly, when I am badly glutened, I can hardly stand up!

As regards the digestive symptoms your wife is suffering, this could indeed be down to coeliac disease.  Can I refer you to the Coeliac UK website (see link below) which describes how to approach your GP about being tested in the UK, which you may or may not have already done?  In order for coeliac testing to be effective, your wife will have had to be consuming gluten for 6 weeks (about 2 slices of normal bread per day) before the initial blood tests.   Then, should the blood tests come back negative, it may still be worth pursuing an endoscopy to absolutely rule in/out coeliac disease, as a small proportion of coeliacs will have negative blood tests.

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I am sorry that the journey to figure out what is going on can take time, but it is well worth pursuing.  I hope this helps but please do come back to us we can help further. 

3 minutes ago, cristiana said:

Hello Robsimonroberts

Welcome to the forum, but I am sorry to hear your wife is going through so much.  As a relatively newly recruited Moderator on this forum, I'd ideally like to move this post so you can start a new thread - but I lack this particular skill at present!  But do feel free to do so yourself.

Meanwhile, I live in the UK so sympathise as the NHS is under a great deal of pressure at the moment and it is a difficult time to be going through medical uncertainty.

My own diagnosis took some time.   I was finally diagnosed a few years ago after a raft of bizarre symptoms (migraines, ulcers, numbness, tingling, clinical anxiety, hallucinations on waking, anemia... and lastly gastric symptoms which finally pointed to coeliac disease).  Subsequently I was referred to a nutritionalist, who told me celiac disease is a great mimicker and the symptoms can be so widespread and general that it can be difficult for a health professional to arrive at a diagnosis straight away.  Also, sometimes celiac disease symptoms take a while to settle after adopting a gluten free lifestyle so it isn't always obvious straight away if all presenting symptoms are down purely to gluten consumption.  

Re: the MRI findings, do you know where the lesions were?  I am by no means an expert in these things but I do recall past posts on this forum where it was mentioned that MRIs can show certain changes in coeliacs, but I need one of my colleagues here to chime in as to what these are.   I also understand migraine sufferers can have unusual MRIs.  But the vertigo you describe can be down to coeliac disease.  Certainly, when I am badly glutened, I can hardly stand up!

As regards the digestive symptoms your wife is suffering, this could indeed be down to coeliac disease.  Can I refer you to the Coeliac UK website (see link below) which describes how to approach your GP about being tested in the UK, which you may or may not have already done?  In order for coeliac testing to be effective, your wife will have had to be consuming gluten for 6 weeks (about 2 slices of normal bread per day) before the initial blood tests.   Then, should the blood tests come back negative, it may still be worth pursuing an endoscopy to absolutely rule in/out coeliac disease, as a small proportion of coeliacs will have negative blood tests.

Open Original Shared Link

I am sorry that the journey to figure out what is going on can take time, but it is well worth pursuing.  hope this helps but please do come back to us we can help further. 

 

Thank you very much for your detailed response. 

From the MRI it was demyelination plaques, it's the top of the brain section I understand. The MRI has shown white matter: they have said it could be MS but again I am not sure if this is just linked to a reaction to gluten.

Would you recommend my wife goes gluten free before her blood test ? Were trying to book a test which will likely be a few weeks off but I suggested my wife tries gluten free, if she does this could it bring up false blood test results? So should I keep her on gluten till after the blood test ?

I will check the UK website as you suggested, thanks for your assistance.

1 hour ago, Robsimonroberts said:

Hi everyone,

For the last 4 months my wife has been experiencing nausea every morning and it's really severe, as the day goes on the nausea is still present but does ease off a bit.

The last 10 days she also now has dihorrea in the mornings, as well as the nausea.

She needs to do a few more blood to try establish the problems, and done a stool sample. But this can take an age to get the results and next steps.

Has anyone experienced anything similar? 

 

On top of this she also had dizziness in the last 4 months, an MRI revealed lesions on the brain (after initial vertigo diagnosis) but the neurologists suggest the brain lesions and stomach issues are not related and 2 separate issues.

 

It's crazy nowadays how we have to ask for advice on here, access to doctors and specialists is near impossible in the UK recently.

 

Appreciate any thoughts.

Thanks for your time.

 

Hi there... I believe a new thread has been created (possibly by a fellow moderator, or yourself?)  which is a good idea.  I wonder if you could post your latest comment onto that thread and  I will answer on that, to avoid getting the threads getting in a tangle! Thanks!  Cristiana

This seems to be the new thread.

https://www.celiac.com/forums/topic/155426-morning-nausea-and-diarrhea-4-months-and-counting/?tab=comments#comment-1089541

it sounds like your wife should be screened for celiac disease, is it possible for you to ask your doctor about that? I will assume that she is not gluten-free yet, but if she is note that she needs to keep eating gluten daily for at least 6 to 8 weeks before being screened for celiac disease.

7 hours ago, Scott Adams said:

it sounds like your wife should be screened for celiac disease, is it possible for you to ask your doctor about that? I will assume that she is not gluten-free yet, but if she is note that she needs to keep eating gluten daily for at least 6 to 8 weeks before being screened for celiac disease.

Hi, she is not gluten free yet. On her normal diet. I cooked her macaroni cheese yesterday 😃

She has a blood test to look for celiac.

I find this article very interesting in terms of vomiting vs D and the specified “after being on a gluten free diet.”  Before i was gluten-free, I spent years with chronic D, which cleared up like a miracle within days of gluten-free. Vomiting was never really an issue. Since being gluten-free, vomiting seems to be the reaction to be glutened.  It was so unusual that the three times it happened, I blamed it more on food poisoning or illness than gluten exposure, because D had always been my symptom. Recently it happened after eating in a restaurant and having some wine. I never felt drunk, but in the middle of night, i felt like i had drunk MUCH more than i had and was vomiting. My body wanted it OUT. Had chills all night like I was really sick, not drank too much. Since D had historically been my symptom, not vomiting, I decided that my body simply could not tolerate alcohol at all anymore. (BUt, i have wine at home and am fine, although it is losing it’s appeal as I do feel healthier if i don’t drink at all.)

Anyway, in hind sight, during those vomiting times, i had tried new “gluten-free” foods, which now i think must have included G, or in a restaurant kitchen. So, interesting to me that that my reaction seems to have changed and become more acute and dramatic in response to G the longer i am gluten-free. (Going from delayed D to 3-6 hours later vomiting.) Anyone else?

On 3/8/2020 at 11:49 AM, 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.

 

I am SO sorry she had to go through all that. My prayers for healing, emotional and physical, are with your family. 

On 8/7/2021 at 3:32 AM, Robsimonroberts said:

Hi everyone,

For the last 4 months my wife has been experiencing nausea every morning and it's really severe, as the day goes on the nausea is still present but does ease off a bit.

The last 10 days she also now has dihorrea in the mornings, as well as the nausea.

She needs to do a few more blood to try establish the problems, and done a stool sample. But this can take an age to get the results and next steps.

Has anyone experienced anything similar? 

 

On top of this she also had dizziness in the last 4 months, an MRI revealed lesions on the brain (after initial vertigo diagnosis) but the neurologists suggest the brain lesions and stomach issues are not related and 2 separate issues.

 

It's crazy nowadays how we have to ask for advice on here, access to doctors and specialists is near impossible in the UK recently.

 

Appreciate any thoughts.

Thanks for your time.

 

Hi, so sorry about your wife’s nausea.  I don’t have chronic nausea with my celiac, but i did have it with all three of my pregnancies- all day, every day for months. The things that helped me immensely were Coca cola with ice (not diet)  and lemon drops (hard lemon sugar candy to suck on.) Now, neither of those is health food, and i do not drink soda, use ice OR hard candy ANY time except during nausea) but boy, do they help with the nausea!! 

3 hours ago, JenniK said:

 So, interesting to me that that my reaction seems to have changed and become more acute and dramatic in response to G the longer i am gluten-free. (Going from delayed D to 3-6 hours later vomiting.) Anyone else?

 

That's me you are describing there!  I think the last time I vomited before going gluten free was when I was in my childhood or early teens even. 

I used to think how lucky I was that my symptom with anything gastric was D rather than V.  Not now.

After 8 years of being on the gluten-free diet, and being really strict about it, I ate a slice of cake at Christmas which was made with normal wheat flour.  For some reason the supermarket had placed Dove organic wheat flour next to the Dove gluten free flour, in the Free From food section and the person who made the cake bought it by mistake.

It was a big piece of cake and within 2-3 hours of eating it I had hot and cold sweats, chills, could hardly stand up, palpitations, vomited three times, and then just had to go to bed.  I had a feeling of being on board a ship for quite a few days later - a sort of mild form of sea sickness.    

I preferred the way it used to be somehow!  Although I don't think my abdominal pain hung around so long that time.  Perhaps because the gluten didn't travel too far south!