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cristiana

Pain - referred gastric or something else?

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Hello everyone,

I've been encouraged by Awol to start a new thread so hear goes...

For some months now I've been in a good place with my celiac disease.  I occasionally get gastritis and have flares of silent reflux but normally after careful eating and a short dose of Nexium I feel a lot better.

However, over the last few weeks I've had some gluten exposure. On top of this I used some aspirin (very small dose) which I don't normally do but I get a particular headache for which aspirin works best.  So no surprise when abut two weeks ago I started to get intermittent burning under the ribs at the front.  This usually signals I've been glutened or had too much aspirin.  But I then got a strange sensation between my shoulders/upper back.  It feels like someone is pressing down on that area, a real pressure.  I have had this before, in 2012.  It was the first symptom that preceded any obvious gastric symptoms.

Since being a celiac when my numbers have been high I've had costochondritis type pain on the left ribs wrapping round to the back that wakes me with such intense nauseating pain,  cramp or spasm like, that I thinking I'm having a heart attack, until it's passed.  I feel like I've been winded.  I've nearly rung for an ambulance on a couple of occasions. However, to be sure I was checked out by doctors and had heart tests - they found nothing wrong.  I've also had a couple of chest X-rays  - nothing.

Now it almost feels as if that very same costo pain has moved to between my shoulders.   Thankfully it isn't waking me at night but up to half a dozen times a day I feel as if an area between my shoulders, or slightly lower, is cramping, around the spine, I think both sides.  It tends to happen after certain arm movements like twisting or moving my arms, or after carrying something,  but sometimes it appears to happen for no apparent reason.  I can actually feel it coming on (like a labour pain)  and it lasts for a few minutes then goes again.  When it happens it is hard to think about anything else, I feel sick and the pain is the sort of thing that makes you feel light headed. I had an ECG yesterday to check it wasn't my heart and all was well - the doctor explained the sort of pain I'm having could be something to do with acid in my esophagus or just a sort of musculo-skeletal problem, like a spasm.  

Sorry for the long-winded description but I'd be interested to know if anyone knows if acid can actually set off a muscular spasm?  

 

 

 

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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You mention this pain being associated with certain arm movements. Could you possibly have a nerve that is being pinched? Have they done an x-ray? Perhaps a chiropracter or a physical therapist may be able to help if a nerve is being pinched? I hope this clears up for you soon. In myself a glutening seems to activate any 'weak' spots in my muscles and ligaments and aggravate my arthritis. I think it has something to do with the inflammation that a reaction causes even if it is just a bit of CC.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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14 minutes ago, trents said:

When is the last time you have had an upper GI done?

Hi Trents

My numbers went from 14 to 20 or 40 - can't recall -  in the autumn after time in France where I got glutened despite my best efforts, but by the time I had my scope (January) with biopsies, all came back normal. The reason I had this scope was I had a cough that lasted months.  My gastroenterologist concluded that it must have been caused by silent reflux particularly as it responded to Gaviscon.  

The cough improved in about April or May and I've hardly used Gaviscon since. 

Cristiana


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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Hi Cristiana...

I'm so sorry that you are having this issue (((((Hugs))))).

Is it possible it could have to do with your Rhomboid muscle?  A strain or spasm...I found this and it sounded similar...

https://www.summitmedicalgroup.com/library/adult_health/sma_rhomboid_muscle_strain/#:~:text=A rhomboid spasm is a,objects on a high shelf

I hope that you get some answers and feel better soon!


January 2014-Celiac

August 2014- Hashimoto's

"You never know how strong you are, until being strong is your only choice."

Bob Marley

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1 hour ago, ravenwoodglass said:

You mention this pain being associated with certain arm movements. Could you possibly have a nerve that is being pinched? Have they done an x-ray? Perhaps a chiropracter or a physical therapist may be able to help if a nerve is being pinched? I hope this clears up for you soon. In myself a glutening seems to activate any 'weak' spots in my muscles and ligaments and aggravate my arthritis. I think it has something to do with the inflammation that a reaction causes even if it is just a bit of CC.

Hi Ravenswoodglass

That's so interesting - maybe that's it?  I did have an x-ray at the time of a chronic cough in January - they didn't note anything. 

Years ago I had a car rear shunt me, and it happened again a few years later, and that winded feeling in my neck/shoulder area is similar to the pain I had then. Ditto the pain I experienced when rather foolishly I lifted my son above me (aeroplane style) when he was seven years old.  I felt the pain rip through my upper back at that time and felt winded for the rest of the day.  The pain then went but not long afterwards I got this weird feeling that my arms weren't connected to me and I felt I was on board ship when I walked.  Had MRIS and they showed my thoracic and neck vertebrae were in a bit of a mess. And probably the other time I felt similar was when I lifted some shopping with my left arm in a heavy basket and again I felt something rip through my upper back, left hand side.  I had a winded feeling in my upper back for a while.

Cristiana

6 minutes ago, trents said:

But there was no evidence of esophagial ulceration or neoplasm? Correct?

None at all.  I asked them to take a closer look because I was worried.  All came back clear. I recall he took samples from the esophagus too because because he thought it might be esophagitis. Sorry - very dodgy spelling going on here!


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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6 minutes ago, icelandgirl said:

Hi Cristiana...

I'm so sorry that you are having this issue (((((Hugs))))).

Is it possible it could have to do with your Rhomboid muscle?  A strain or spasm...I found this and it sounded similar...

https://www.summitmedicalgroup.com/library/adult_health/sma_rhomboid_muscle_strain/#:~:text=A rhomboid spasm is a,objects on a high shelf

I hope that you get some answers and feel better soon!

Thanks Icey

That sounds similar - very interesting.  I wonder if anyone reading has every had this because if that is what it is I'd be so interested to know how severe the pain felt.  Also, when it happens, it feels quite central but perhaps it is only on the left side?  But between the shoulder in the spine is a good description. I must pay more attention.

Cristiana 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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4 hours ago, ravenwoodglass said:

You mention this pain being associated with certain arm movements. Could you possibly have a nerve that is being pinched? Have they done an x-ray? Perhaps a chiropracter or a physical therapist may be able to help if a nerve is being pinched? I hope this clears up for you soon. In myself a glutening seems to activate any 'weak' spots in my muscles and ligaments and aggravate my arthritis. I think it has something to do with the inflammation that a reaction causes even if it is just a bit of CC.

I've been mulling over your reply this afternoon.  My grandmother was always complaining about arthritis, and rheumatism - a word used by former generations that one doesn't really hear used by doctors in the UK these days. Looking it up in the dictionary it defines it as:

"any disease marked by inflammation and pain in the joints, muscles, or fibrous tissue, especially rheumatoid arthritis."

I would say that the pain I have is described well by this old fashioned term, and the fact that those are the very areas you mention that are aggravated when you get a bit of CC.   It makes sense.  Thank you so much.

 

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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Another question... related.  If this is gastric pain after all.

I wonder - can gastritis pain, heartburn pain, reflux pain etc just be felt in the back alone, without feeling it under the ribs/behind the sternum where I've usually felt it in the past?

(BTW, I'm taking a course of pills and if it doesn't get better in a few days I will see my doctor but I'm just curious.)


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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But you also said the pain is associated with arm movement. That doesn't add up to gastritis. It sounds more like a neuro-muscular problem to me. I sometimes get pain in my back around the scapula area. My physical therapist tells me it is referred pain from nerve irritation in the facets of the cervical spine. I can push on the spot where I feel the pain but that does not cause discomfort. 

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Hi trents.

Thanks for responding so quickly.  Yes.  You are right.  I'm totally floored by what's going on because the one moment it feels totally muscular and then it doesn't.

Just now I bent down to take something out of the oven and wham, upper back pain.

And yet just now I sat down to dinner and a wave of nausea went right through me.  Yet it all seems to be to the back of me, rather than felt in the front, if that makes sense.  I could hardly eat.  I think I must have more than one thing going on.  It seems that way.

I think I'm going to have go back to the docs.  If I get an answer I'll let you know.  

Thank you for your help.

C

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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Not to alarm you, but upper back pain and nausea can be associated with a heart attack in progress. Particularly in women, heart attack symptoms can be atypical. That is, not in the chest where you would expect. And we all know too many people who went in for a physical and the doc said, "Your heart is in good shape," and they drop dead the next day.

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Didn’t you mention that your cervical and thoracic sections of your back were messed up?  I have had compressions fractures in my back due to osteoporosis (due to undiagnosed celiac disease).    Movement can cause shift in the discs that can cause weird pain and sensations that can come and go.  I have issues with my neck  now causing neurological issues with my arms.  Maybe have your doctor check those areas again.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

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I couldn't agree more.  I had several different tests at the hospital including an ECG and some sort of other monitor and the doctor assured me I wasn't having a heart attack on Sunday.  I went in because I was convinced I was, having read that's where women's heart issues can show.

   

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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9 minutes ago, cyclinglady said:

Didn’t you mention that your cervical and thoracic sections of your back were messed up?  I have had compressions fractures in my back due to osteoporosis (due to undiagnosed celiac disease).    Movement can cause shift in the discs that can cause weird pain and sensations that can come and go.  I have issues with my neck  now causing neurological issues with my arms.  Maybe have your doctor check those areas again.  

Yes...  I think that is also possible.  My son literally just now asked me to switch the light on which involved putting my arm upwards behind me, as if I was swimming the backstroke, and I turned, and the pain came back.

Sometimes I feel like I'd like to pay for a full body MRI scan and find out what on earth is going on.  Since my diagnosis I've had so many weird pains, doctors visits, consultants visits, scans.  My friends hardly dare ask how I am. However, if they have anything wrong with them they come to me as they are sure that I will have had it too and will empathize.   

I'm just wondering now though if some of these weird things could be something to do with the ppi I'm taking.  In the past it has never caused me problems, but googling side effects it's interesting how upper back pain and dizziness are mentioned. 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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5 minutes ago, cristiana said:

Yes...  I think that is also possible.  My son literally just now asked me to switch the light on which involved putting my arm upwards behind me, as if I was swimming the backstroke, and I turned, and the pain came back.

Sometimes I feel like I'd like to pay for a full body MRI scan and find out what on earth is going on.  Since my diagnosis I've had so many weird pains, doctors visits, consultants visits, scans.  My friends hardly dare ask how I am. However, if they have anything wrong with them they come to me as they are sure that I will have had it too and will empathize.   I got a good chuckle out of this!

I'm just wondering now though if some of these weird things could be something to do with the ppi I'm taking.  In the past it has never caused me problems, but googling side effects it's interesting how upper back pain and dizziness are mentioned. 

I would not think a PPI would cause these symptoms. If anything, it should eliminate it being an esophagial issue as long as the PPI dosage is giving you good coverage.

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30 minutes ago, trents said:

I would not think a PPI would cause these symptoms. If anything, it should eliminate it being an esophagial issue as long as the PPI dosage is giving you good coverage.

Yes... that's very true. I'm sorry ranitidine is off the shelves as that medication suited me best.  I wonder if they'll ever bring it back.

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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5 minutes ago, cristiana said:

Yes... that's very true. I'm sorry ranitidine is off the shelves as that medication suited me best.  I wonder if they'll ever bring it back.

 

They will.  It was contaminated.  The drug was effective.  The drug companies just need to insure that China will accept oversight from foreign government agencies or manufacture it somewhere other than China or India (they allow FDA oversight, but have had many violations).  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

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12 minutes ago, cyclinglady said:

They will.  It was contaminated.  The drug was effective.  The drug companies just need to insure that China will accept oversight from foreign government agencies or manufacture it somewhere other than China or India (they allow FDA oversight, but have had many violations).  

I liked it because it didn't cause bloating. In fact, I'm wondering if Nexium is causing bloating and this extra pressure in my upper abdomen is exacerbating the back pain.

 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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I think I'll have to go back to see my poor doctor this week and try to find out what's behind all of this. 

But thank you all so much for your helpful contributions ravenswoodglass, cyclinglady, trents and icelandgirl.   I have a lot more to think about now.  I really appreciate your support.


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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1 hour ago, cristiana said:

I liked it because it didn't cause bloating. In fact, I'm wondering if Nexium is causing bloating and this extra pressure in my upper abdomen is exacerbating the back pain.

 

That sounds like a plausible theory. Ranitidine (Zantac) is not a PPI but it has the downside of users developing tolerance to it such that the dosage needs to be increased. Have you tried different PPIs and would your insurance cover alternative PPI's or is it possible that your PPI dosage could be lowered? The bloating might be caused by too low of a PH resulting in poor digestion of some carbs and the buildup of methane.

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On 6/22/2020 at 10:31 AM, cristiana said:

Hi Trents

My numbers went from 14 to 20 or 40 - can't recall -  in the autumn after time in France where I got glutened despite my best efforts, but by the time I had my scope (January) with biopsies, all came back normal. The reason I had this scope was I had a cough that lasted months.  My gastroenterologist concluded that it must have been caused by silent reflux particularly as it responded to Gaviscon.  

The cough improved in about April or May and I've hardly used Gaviscon since. 

Cristiana

Christiana, 

Proton pump inhibitors like Nexium deplete your magnesium level...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782221/

Gaviscon contains magnesium.  Perhaps it works better for you because it contains magnesium.

Have you discussed with your doctor you may be deficient in magnesium?  

Here's an article that describes magnesium deficiency symptoms....see if your symptoms (muscle cramps) match these.

https://wellnessmama.com/54128/magnesium-deficiency/

 

Many Celiacs are deficient in Vitamin D.  Vitamin D deficiency is being connected to costochondritis.

https://pubmed.ncbi.nlm.nih.gov/22761623/

 

Vitamin D and magnesium work together.  Magnesium also works with thiamine.  

 

[PDF] Thoracic Rib Cage Lesions Caused by Thiamin Deficiency - Etiology and Physiologic Therapy of Tietze's Syndrome - Austin Publishing Group
https://austinpublishinggroup.com › ...

 

Thiamine deficiency can manifest as Gastrointestinal upsets like gerd....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175961/

Thiamine deficiency can also cause a cough.

[PDF] Thiamine and magnesium deficiencies: Keys to disease - Peirson Center
"that chronic cough may be part of the autonomic dysfunction" caused by thiamine deficiency.

Here's another article about thiamine deficiency symptoms.  Do any of these match your symptoms?

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#section9

Thiamine deficiency can effect your digestion of fats and carbohydrates.  Thiamine is needed to make those digestive secretions.  

Celiacs sometimes suffer from gallbladder problems.  Here's an article that describes gallbladder problem symptoms...

https://www.medicalnewstoday.com/articles/311357

While this article says upper right quadrant pain may indicate gallbladder problems, my pain was square in the middle of my back.  I did have to ring my mum in the middle of the night to take me to hospital for emergency surgery.  

And some Celiacs have problems with their pancreas.....

https://www.nhs.uk/conditions/chronic-pancreatitis/

 

Celiac Disease causes malabsorption which results in malnutrition.  Part of proper follow up care for Celiacs is correcting vitamin and mineral deficiencies.  

Please discuss these with your doctor.  I'm not a doctor.  I'm a microbiologist.  

Hope this helps.

Knitty Kitty 

P.S. Edit is for this article connecting rheumatoid arthritis and thiamine deficiency....

https://www.hormonesmatter.com/juvenile-rheumatoid-arthritis-an-unusual-treatment/

Edited by knitty kitty
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Hi Knitty Kitty

Thank you SO much for sending me all of this.  I will read it properly later when I've finished some work I have to do.

I have wondered before about deficiencies.  I'd love to know what sort of deficiencies I still have and I wouldn't be at all surprised if I have a problem with not enough magnesium because I occasionally get muscle twitching and a few days of supplementing always seems to help.  I took it regularly when first diagnosed because I had read it helped with that and anxiety - I think it's time to reintroduce.

After my last post I decided to stop my PPI for one day and followed a strict gastritis diet to see if it helped.  Interestingly I had a day of next to no trouble at all.   No burning stomach, no dizziness, no nausea and what pain I had in my upper back felt what I would identify as classic musculoskeletal pain.  Next day the classic burning came back in my stomach which is how I feel if I have been glutened or if I have had some aspirin.  I decided not to take a PPI and try to manage with extra gaviscon, camomile tea etc.  Apart from some very painful trapped wind after consuming an iced latte  - stupid - that was relieved by drinking peppermint tea - and feeling slightly off at suppertime, I still feel much better than I did two days ago.

Anyway, today will be day three of this experiment  - I will update when things become a bit clearer.  

Thank you once again for taking the time to provide all this info. Much appreciated.


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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Cristiana, 

Have you considered the Autoimmune Paleo Protocol diet?  It's basically meat and veg, some fruit, no dairy, no nightshades (potatoes, tomatoes, eggplant and peppers), no grains, no legumes (beans).  It's helpful in reducing inflammation.  

The book "The Paleo Approach" by Sarah Ballentyne covers this diet for autoimmune diseases.  I found it very helpful...

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