Morning Nausea and Diarrhea - 4 months and counting

[Robsimonroberts]

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 diarrhea 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? Could this be gluten? Celiac ? We are totally stumped and at the end of our wits.

 

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.

[cristiana]

Hello Robsimonroberts

Welcome to the forum, but I am sorry to hear your wife is going through so much.  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 this medical uncertainty.

My own diagnosis took some time.  This is not uncommon among coeliacs!   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 coeliac 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 coeliac 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.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/

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. 

[ravenwoodglass]

1 hour ago, Robsimonroberts said:

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.

Good Morning,

Not much time so I need to be brief. If the doctors are thinking MS do insist on having them do a spinal tap. There will be debris from the demylination if she actually has MS.  Celiac can cause what are referred to as 'UBOs' or unidentified bright objects that are very similiar to the lesions caused by MS but without the demylination. If they are UBOs no powerful drugs will be needed as the going VERY strictly gluten free will relieve the symptoms if not completely at least to a great degree. Do not let her go gluten free until all celiac related testing is over and once all celiac testing is finished a good strict trial of the diet for a few months is in order as false negative celiac testing is possible. I hope she is feeling better soon.

[Robsimonroberts]

4 minutes ago, ravenwoodglass said:

Good Morning,

Not much time so I need to be brief. If the doctors are thinking MS do insist on having them do a spinal tap. There will be debris from the demylination if she actually has MS.  Celiac can cause what are referred to as 'UBOs' or unidentified bright objects that are very similiar to the lesions caused by MS but without the demylination. If they are UBOs no powerful drugs will be needed as the going VERY strictly gluten free will relieve the symptoms if not completely at least to a great degree. Do not let her go gluten free until all celiac related testing is over and once all celiac testing is finished a good strict trial of the diet for a few months is in order as false negative celiac testing is possible. I hope she is feeling better soon.

Thank you for your response.

Yeah my wife has seen a private neurologist who read her report and do physical test, she said she is showing no signs of MS. But when her local GP saw the images she said it could be MS, so conflicting messages.

Were waiting to see a neurologist through the NHS but this may not be until 2022. I think it will be a long waiting game and trying different things.

I will keep her on the gluten until all testing is over and done with. She is on anti sickness drugs (stemitil) and anxiety tablets at the moment as well. But they don't seem to have too much of a positive effect.

[ravenwoodglass]

Has she had a celiac panel and testing for B12 levels? Her B12 levels should be over 500 and she shouldn't be supplementing for a couple weeks before the levels are tested. I have to run but if not do insist. If her bloods come back positive on the celiac panel some doctors will give an 'official' diagnosis based on the levels coming down and relief of symptoms.

[Robsimonroberts]

1 minute ago, ravenwoodglass said:

Has she had a celiac panel and testing for B12 levels? Her B12 levels should be over 500 and she shouldn't be supplementing for a couple weeks before the levels are tested. I have to run but if not do insist. If her bloods come back positive on the celiac panel some doctors will give an 'official' diagnosis based on the levels coming down and relief of symptoms.

Thanks, the only supplements she is taking is vitamin D.

She's not had a celiac panel yet no, blood test first then I presume further tests after. Thanks for your info.

[cristiana]

Hi again

Great advice from Ravenswood.

Also just to let you know that my nutritionalist saw a lady who had been told by her doctor that she had MS.  No one had checked for coeliac disease so at the nutritionalist's advice these tests were done, and indeed she did have coeliac disease instead!

My nutritionalist also went onto say that some of her MS patients are not coeliacs but have found adopting a gluten free diet very helpful, and with the modern MS drugs are doing well.   

But it is really important to test for coeliac first so I am so pleased you are going down this route.   So don't go gluten free yet!  Follow the advice on Coeliac UK's website.  If your wife has been eating good amounts of gluten up until now she must continue to do so.   The good news is a blood test should come back within about a week to ten days, if not before.  

Keep us posted.

Cristiana

 

[Robsimonroberts]

39 minutes ago, cristiana said:

Hi again

Great advice from Ravenswood.

Also just to let you know that my nutritionalist saw a lady who had been told by her doctor that she had MS.  No one had checked for coeliac disease so at the nutritionalist's advice these tests were done, and indeed she did have coeliac disease instead!

My nutritionalist also went onto say that some of her MS patients are not coeliacs but have found adopting a gluten free diet very helpful, and with the modern MS drugs are doing well.   

But it is really important to test for coeliac first so I am so pleased you are going down this route.   So don't go gluten free yet!  Follow the advice on Coeliac UK's website.  If your wife has been eating good amounts of gluten up until now she must continue to do so.   The good news is a blood test should come back within about a week to ten days, if not before.  

Keep us posted.

Cristiana

 

Thanks all, will keep you posted when we have progressed 

[trents]

Robsimonroberts, you and your wife have a decision to make. If she goes gluten free before testing it will invalidate the tests. However, if testing is unavailable in the near future because of the present state of the healthcare system in the UK, then it might be worth beginning the gluten free diet now to see if her symptoms improve. If they do then you have your answer. But you would have to educate yourselves as to where and how gluten is hidden in the food supply. It's not a matter of cutting down on gluten by eliminating major sources such as bread and pasta, it's a matter of eliminating it completely. It requires becoming a faithful food label ingredient reader as well as learning how gluten can be disguised by terminology. Medications and supplements can contain wheat starch as a filler in the pills. Wheat starch is commonly used in canned soups. It is a key ingredient in most soy sauces. It is used in some brands of chocolate syrup. Would you have expected to find gluten in such things?

If she were to ago gluten free now and when testing becomes more available later on, your wife could go back on a "gluten trial." This would involve consuming gluten containing foods of the equivalent of two slices of wheat bread for six to eight weeks before the serum antibody test and, if it is ordered, at least two weeks before the endoscopy/biopsy.

There is another option and that is investing in a home celiac test kit: https://www.testing.com/celiac-test/at-home/ Not sure what is available to you in this regard in the UK.

[cristiana]

Great advice from Trents.  I'd just like to add, your wife probably won't have any problem obtaining blood tests at this time, so you may wish to get blood tests done in any case.  The endoscopy may take a while longer than normal but your NHS hospital may not have too long a waiting list at the moment compared with others.   In any case, it may be that if the results are strongly indicative of coeliac disease, she may not have to have an endoscopy. 

What I should also say is that in the UK a coeliac diagnosis has certain benefits.  Coeliacs are usually assigned an NHS nutritionalist,  as well as a gastroenterologist who will monitor the condition through annual blood tests to check for complications,  and are offered bone density scans every few years to check for osteoporosis.  Also, I have found that if I have any new gastric symptoms I can go straight to gastroenterology without having to go through my GP.  

 

[Robsimonroberts]

1 minute ago, cristiana said:

Great advice from Trents.  I'd just like to add, your wife probably won't have any problem obtaining blood tests at this time, so you may wish to get blood tests done in any case.  The endoscopy may take a while longer than normal but your NHS hospital may not have too long a waiting list at the moment compared with others.   In any case, it may be that if the results are strongly indicative of coeliac disease, she may not have to have an endoscopy. 

What I should also say is that in the UK a coeliac diagnosis has certain benefits.  Coeliacs are usually assigned an NHS nutritionalist,  as well as a gastroenterologist who will monitor the condition through annual blood tests to check for complications,  and are offered bone density scans every few years to check for osteoporosis.  Also, I have found that if I have any new gastric symptoms I can go straight to gastroenterology without having to go through my GP.  

 

That's great advice, thanks everyone. Were on the blood test waiting list as we go away soon and want them done before we go on a small holiday.

I think this will be a bit of a long journey, but it is weird how in the mornings she literally can't get out of bed from feeling nausea, strange how it's worst around 7am around the time she wakes up.

[cristiana]

Does your wife have accompanying stomach pain with this nausea, or is it more like a the sort of nausea one feels if one is seasick?  

[Robsimonroberts]

Just now, cristiana said:

Does your wife have accompanying stomach pain with this nausea, or is it more like a the sort of nausea one feels if one is seasick?  

Sometimes she gets stomach pain, she may get bad wind. Also some mornings we hear her stomach grumbling along with the nausea.

[cristiana]

I have been googling morning nausea and it seems there's quite a bit out there about it.  There are a few mentions of gastritis.  I wonder if your wife might have gastritis?  A friend of mine suffers from gastritis and she feels terrible first thing, before she has eaten.

I suffer from gastritis too and more recently if my stomach is acting up I can feel very nauseous in the middle of the night.

Prior to my coeliac diagnosis and in the months following diagnosis when I was still healing I had tremendous bloating, diarrhea and a sore stomach.  It was recommended that I give up dairy for a while.  This made a huge difference.  If your wife has coeliac disease her damaged gut will mean she is not digesting lactose properly, and could result in these sort of symptoms.  It may be worth cutting out dairy for a while to see if it helps.  This will not affect her coeliac blood tests.

Also, the morning is a time of day when blood sugar can be low and also if your wife is feeling dizzy anyway getting up quickly won't help - all this will just make things worse.  The perfect storm. 

Just a few things worth considering perhaps.

Edited August 7, 2021 by cristiana

[Wheatwacked]

My wife's gastric problems ended up being Ovarian Cancer. She had years of endometriosis before that so no one thought to look. She went through magnesium citrate like soda pop.

[Robsimonroberts]

25 minutes ago, Wheatwacked said:

My wife's gastric problems ended up being Ovarian Cancer. She had years of endometriosis before that so no one thought to look. She went through magnesium citrate like soda pop.

Wheatwacked, was your wife's symptoms the same as mine? 

How did it come to the conclusion?

 

Hope your wife is OK and recovered well.

[cristiana]

Just read Wheatwacked's post.  

If you want your GP to check for this ask for a CA125 blood test, and even if the levels return as normal and your wife continues to feel bloated usually GPs are pretty good at referring patients for a a transvaginal ultrasound to rule out anything to do with the ovaries.   You can always ask for this for peace of mind.

 

[Robsimonroberts]

3 minutes ago, cristiana said:

Just read Wheatwacked's post.  

If you want your GP to check for this ask for a CA125 blood test, and even if the levels return as normal and your wife continues to feel bloated usually GPs are pretty good at referring patients for a a transvaginal ultrasound to rule out anything to do with the ovaries.   You can always ask for this for peace of mind.

 

Thanks, yeah this morning she was bad.

Couldn't get out of bed from belly pain and sickness. Only time she got out was for dihorrea or vomiting (but nothing came out).

She had 2 blood tests today so hopefully they reveal something not to serious. Then I can suggest the ca125 test if they don't show up anything.

 

 

[cristiana]

I am so sorry she is having such a rough time.   I really hope you will both get the answers you need very soon. 

[Wheatwacked]

4 hours ago, Robsimonroberts said:

Hope your wife is OK and recovered well.

Thank you. She was an RN and kept most of it to herself but it went on a long time, maybe years. I noticed lots of weight gain and gastric distress that seemed wrong. I was practically buying those 10 once bottles of magnesium citrate by the case. We were in lockdown from Hurricane Francis (landfall 1 am Sept 5, 2005 ten miles away). By dawn she was in so much pain we drove to the emergency room (still in lockdown) and they admitted her. The catscan burned out trying to operate on backup power so a week later she was transported to a nearby hospital where power had been restored and they found the tumor stage 3B. Prognosis less than a year. They did debulking surgery and 3 courses of chemo. Regular catscans and CA125 blood test showed no remission. Very little appetite and getting weaker. No nutritional support other than "eat a healthy diet". She was withering away and eventually treatment changed to palliative at home Hospice. She passed on Sept 18, 2005 (our 33rd anniversery).

So when I read your post here, these thoughts popped into my head. Overian Cancer, like Celiac Disease is usually overlooked because the symptoms are vague and other diseases are more popular. This is not medical advice and the ego of many doctors makes them angry when you suggest something they did'nt think of ("I went to school, I know my job, who are you to question?"), but at least get it eliminated earlier than later.

All the essential Vitamins and minerals, above the minimum RDA is needed to reverse the downward spiral started by a disease, above and beyond the proper medical treatments.

[Robsimonroberts]

Sounds like you had a challenging experience, thanks for the input. Hope your wife is all ok now.

I think nowadays the doctors source of information is like everyone else's: Google.

[Robsimonroberts]

Hi, wanted to give an update so other people can also benefit from this info.

My wife's stool samples and blood test came back all clear. So they checked celiac, thyroid, ovarian cancer, etc...was all clear.

They suspect IBS with Gastritis, she is on medication for a month. Meanwhile I'm putting her through to see a gastro specialist and hopefully start the process of an endoscopy to fully rule things out.

She had another bad night last night so hopefully these tablets start to help.

[cristiana]

Many, many thanks for keeping us updated.

I'm a so glad a that a few important things have been ruled out already but my heart goes out to you both at this really challenging time.  I hope that the treatment brings relief. 

Just one very important thing - crazy as it sounds, make sure the endoscopy will include checking for coeliac disease as I have a couple of friends who had scopes but the doctors only looked for gastritis and looked no further. Blood tests can definitely be negative and yet one can still have villous blunting, so make sure they do check for that.   IBS (which I also have!) and gastritis (ditto) can cause immense discomfort so I really sympathise.  Please do send our best wishes to your wife.

[trents]

5 hours ago, cristiana said:

 

 

 

5 hours ago, cristiana said:

 

Just one very important thing - crazy as it sounds, make sure the endoscopy will include checking for coeliac disease as I have a couple of friends who had scopes but the doctors only looked for gastritis and looked no further. Blood tests can definitely be negative and yet one can still have villous blunting, so make sure they do check for that.   IBS (which I also have!) and gastritis (ditto) can cause immense discomfort so I really sympathise.  Please do send our best wishes to your wife.

What medication did they put her on?

Yes, indeed!

Edited August 11, 2021 by trents

[Robsimonroberts]

She's has been given citalopram for anxiety, cyclizine for nausea and lansoprazole for gastro resistance. So a mixture of stuff.