Pain - referred gastric or something else?

[Kate333]

4 hours ago, cristiana said:

Hi Kate

Don't apologise for going briefly off topic.  Your discussion with Trents has been very interesting and eye opening for me.

But just to say I had an appointment at a BC - sorry - by that I meant breast clinic, not British Columbia, more's the pity.  I'm British though and looking at your long list I have to say we share a lot of the same tastes. The real Downton Abbey is about an hour's drive from me, and they filmed some of the episodes of Foyles War in my home town.   However, you don't mention the detective programme "Vera".   I wonder if you like it?  Filmed in Northumbria which is a stunning part of England and cept the hero is a middle aged woman who couldn't care less about the things that preoccupy most women of her age - a refreshing change.   There is at least one other fan on this forum but I'll let them introduce themselves if they so wish - I suspect they will be reading this!

C

Hi C.  No I haven't seen/heard of "Vera" yet but it sounds really interesting!  I hope your MRI goes well and you are feeling better.

Today has been really hard for me.  I awoke this morning only to have stomach cramps followed by MULTIPLE loose BMs (about 4 this AM so far!).  Has Celiac ever so dramatically messed with your digestion or given you these kinds of crazy IBS-like symptoms?  I have also lost a few more pounds this past week.  I know I don't eat nearly as much as I should since all this (literally) "crap" with my digestion and food started last year, so I'm not surprised if I have developed indirect anorexia as well.   So ironic for me because I WANT to eat, used to LOVE eating and most food, and really miss normal digestion/eating!  But some days, the thought of food/eating almost disgusts me....I guess because I am so scared to eat, knowing it will likely only trigger more D, C, gas, cramps, and who wants that?  Oh well...enough of feeling sorry for myself.  Thanks for listening/responding!   

[cristiana]

56 minutes ago, Kate333 said:

Hi C.  No I haven't seen/heard of "Vera" yet but it sounds really interesting!  I hope your MRI goes well and you are feeling better.

Today has been really hard for me.  I awoke this morning only to have stomach cramps followed by MULTIPLE loose BMs (about 4 this AM so far!).  Has Celiac ever so dramatically messed with your digestion or given you these kinds of crazy IBS-like symptoms?  I have also lost a few more pounds this past week.  I know I don't eat nearly as much as I should since all this (literally) "crap" with my digestion and food started last year, so I'm not surprised if I have developed indirect anorexia as well.   So ironic for me because I WANT to eat, used to LOVE eating and most food, and really miss normal digestion/eating!  But some days, the thought of food/eating almost disgusts me....I guess because I am so scared to eat, knowing it will likely only trigger more D, C, gas, cramps, and who wants that?  Oh well...enough of feeling sorry for myself.  Thanks for listening/responding!   

Vera (if you like it) is great escapism!  She's a lady that loves cake and chips and all that healthy stuff, too, much to the consternation of her various detective sergeants.  

I'm so sorry that you have had all this trouble already this morning.  I have problems when I have too much dairy - mostly trapped gas and D.   My gastroenterologist is always telling me to give up dairy because he reckons it causes these IBS like-symptoms.   I had a colonoscopy late last year as I was sure I was getting something else because of pain, C, D etc but it turns out nothing - so I guess he must be right.  When I cut out dairy I do have great improvement - I guess I bring it on myself, but I do love yoghurt and cheese!   

When I was in A&E ten days ago the doctor investigating my heart etc asked if I had normal BMs.   To which I replied "D this morning, but anything is normal for me because I'm a coeliac".  He smiled knowingly   I do go through weeks and weeks of normality and then something upsets the system and I have to start all over again.

I'm afraid one's relationship with food can, understandably, become very complicated with celiac disease. Ditto gastritis/GERD.  

At the moment anyway I am getting terrible trapped wind in my upper torsoe and belching for England.  Thank goodness for strong chamomile tea.   

BTW - have you ever tried it?  Supposed to be excellent for gastritis, heartburn, stress etc.  I thought it was old wive's tales but I know that the Spanish use it as a gastric remedy and I really find it helpful.

 

 

[Kate333]

10 minutes ago, cristiana said:

Vera (if you like it) is great escapism!  She's a lady that loves cake and chips and all that healthy stuff, too, much to the consternation of her various detective sergeants.  

I'm so sorry that you have had all this trouble already this morning.  I have problems when I have too much dairy - mostly trapped gas and D.   My gastroenterologist is always telling me to give up dairy because he reckons it causes these IBS like-symptoms.   I had a colonoscopy late last year as I was sure I was getting something else because of pain, C, D etc but it turns out nothing - so I guess he must be right.  When I cut out dairy I do have great improvement - I guess I bring it on myself, but I do love yoghurt and cheese!   

When I was in A&E ten days ago the doctor investigating my heart etc asked if I had normal BMs.   To which I replied "D this morning, but anything is normal for me because I'm a coeliac".  He smiled knowingly   I do go through weeks and weeks of normality and then something upsets the system and I have to start all over again.

I'm afraid one's relationship with food can, understandably, become very complicated with celiac disease. Ditto gastritis/GERD.  

At the moment anyway I am getting terrible trapped wind in my upper torsoe and belching for England.  Thank goodness for strong chamomile tea.   

BTW - have you ever tried it?  Supposed to be excellent for gastritis, heartburn, stress etc.  I thought it was old wive's tales but I know that the Spanish use it as a gastric remedy and I really find it helpful.

 

 

LOL.  I wish Vera aired here in "The Colonies" (I live in Northern California); it seems like great fun!  I get my daily telly "Brit-fix" from PBS (Public broadcasting System) and BBC and, unfortunately, Vera is not on either channel. (I don't have to translate that acronym for you!😉).  I esp. love the old rerun Brit-coms "Keeping Up Appearances"  (remember Hyacinth:  "That's Boookay not Bucket"!!) and "Time Passes By" (Dame Judy Dench). Years ago, I enjoyed  "Prime Suspect" with [now Dame] Helen Mirren as Det. Jane Tennyson.   That series was a HUGE hit here and even inspired a similar woman detective series "Murder She Wrote"...loosely based on the great Agatha Christie mysteries).  It starred the legendary Angela Lansbury (also a HUGE star here).  She is in her 90s and STILL does plays on Broadway!!  What a great role model!  How did I forget to include these wonderful women in my earlier "favorite things British" email?  Must be G "brain fog".😵  

I know what you mean about the...ahem...Wind Issue...I have a wicked sense of humor, normally would enjoy a good hearty laugh about all my (mouth and bum) "tooting" if I weren't so miserable from all the other symptoms (D,C, weight loss, muscle cramps).  I also get occasional chills and hand/foot coldness/numbness/tingling.  Do you ever get that?  Probably due to stress, vitamin deficiency more than gluten issues.  I was scoped (both ends) last Sept. and my GI doc said everything looked fine, exc. "mild" gastritis....

Thanks for the chamomile suggestion.  I tried ginger tea once..but it didn't seem to help. I'll try chamomile but it's difficult here to find strictly "pure" 1-ingredient tea bags (esp. gluten-free).  Most big retail teas seem to be only multi-blend (several different teas mixed into each bag)...  Well...that (substandard tea) is what we naughty Americans get for starting that all that bloody Boston Tea Party business back in 1773....🙂.  I really loved black tea (with ice and brown sugar), used to lap it up EVERY DAY by the GALLON years ago.  I gave it up after developing heartburn but herbal teas are probably not as acidic.

How do you Brits cope during the CV pandemic?  For me, music, walks outside for exercise (early AM to avoid crowds and high temps).  Re-reading old classic novels ("Wuthering Heights" this week).  I heard about PM Johnson ending up in hospital and Prince Charles testing positive.   They are very lucky to have survived it.  God bless Queen Eliz.  The woman seems to be made of Titanium Steel!  Speaking of royals, what do you make of "Duchess" Meghan Markle?  Sorry to be too snarky or offend (if you are a fan), but suffice it to say that we Americans spend a lot of time laughing, shaking our heads, rolling our eyes at her/Prince Harry's melodrama/antics.   They have ruffled quite a few feathers here since moving to California...The American tabloids have nicknamed her "ME-Again" Markle.

Take care and stay well,

Kate

[cristiana]

Yes, I've had the numbness, tingling and chills (the last always follows a bad glutening).   We sound very alike!   

I think Chamomile is definitely worth a go.  You are right - it needs to be the pure stuff.  For some reason it's quite easy to come by here - maybe the UK's proximity to mainland Europe where I think they must grow a lot of it.   I hope you find some soon.  I remember reading somewhere that it is important to let it steep for a while (I have it in mind around 5 minutes) but see how you get on.  An acquired taste but as I associated it with feeling better that taste was soon acquired.

Believe it or not Hyacinth Bucket lives not too far away from here.  I saw her waiting in a queue for a table in a restaurant about twenty years ago and what struck me was how unlike her screen persona she was.  Charming, gracious and not at all flashy!  

The CV pandemic has been a testing time.   A lot of people out there who are very careful to follow the rules as best they can, and a sizeable minority who seem to be flaunting the regulations at every turn.  Illegal raves, huge beach gatherings.... Very tough on the young, but I fear it's just going to prolong the pain.

With regards to M&H, I must say I feel very sad that things have turned out the way they have.   However, as you say, the Queen is made of titanium.  I'm a real fan.  Won tickets to go to QEII's Golden Jubilee Concert at Buckingham Palace years ago.  The whole Royal Family was there and strangely, also, Mr Bean!    

Anyway, hope you are having a better day.  

C

[Kate333]

Hi C.

Mr. Bean is a hoot!  I also loved to watch Monty Python & the Flying Circus.  How cool to meet Hyacinth and thanks for sharing your memories of her.  That woman made me laugh to the point of tears whenever I saw her on the telly.

You are so lucky to have been invited to Buckingham Palace!  How exciting!  I really think you folks in the UK have more access to the Royal Family than we Americans have to our officials...The only people who seem to be "invited" to the WH are politicians and campaign donors or "props" (people needed for photo ops).  Trump has become VERY disliked here, esp. as the CV illness/deaths skyrocket.  He had a campaign rally in Oklahoma recently and only a third of the seats were filled so I think he is headed for a big defeat in Nov. elections. 

K

 

[cristiana]

On 6/23/2020 at 11:59 PM, trents said:

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.

By way of an update. 

I think when I used Gaviscone and a PPI it caused so much bloating (relieved by burping!) that it was aggravating pain in my back.   The days I don't use these meds the bloating is almost non-existent and I feel much better - just a little back pain, except I have burning in the epigastric area!  So I think I need to sort out this conundrum through eating bland food and small portions and only resorting to these other meds as necessary.

Thankfully the dizziness and nausea have gone - maybe an initial reaction to taking the Nexium.  I think I was taking too much too so I have lowered the PPI dose. 

Having read more on muscle pain,I'm also wondering if some of my muscle pain is caused by low iron.  I know my levels are dreadful but I can't do much about it as my haemoglobin level is quite high and my consultant thinks I shouldn't supplement.  I'll see where my levels are at my next o/p appointment and he might let me go onto a low dose for a while.  I recall now that before I was first diagnosed I had a strange pressure between my shoulders and that went when I started supplementing iron - that was even before I knew I was a coeliac and therefore pre: adopting a gluten-free diet.

Anyway, thank you all so much for your help.  It was a pretty scary few days as the symptoms were severe and you helped me a lot.

I hope you are doing better, Kate?

[MADMOM]

On 6/22/2020 at 8:32 AM, cristiana said:

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?  

 

 

 

 

i too have that pain between my shoulders more on the right and on both flanks on each side of my back more on right - i’ve only been gluten free for 5 weeks and since i’ve been gluten free it has improved - it does come and go still just not as much as it did initially - a week befire i was diagnosed i did check my gallbladder liver and pancreas via ultrasound and all looked normal no gall stones or kidney issues either - my levels were high so i’m assuming it will take some time before all these aches and pinchy rib and tummy pain subside - i think it’s all part of the healing process - 🙏🏻🙏🏻id love to hear from others who have healed - if they experienced this 

[plumbago]

Hi Everyone,

I'm picking up a thread from a couple of years ago because I would love to hear from some of the participants here, specifically about symptoms of GERD.

For the last 2-5 days, I have felt like something is sort of stuck in my throat (superficially, not in a major way, more of an annoyance) or lower down, in the esophagus (middle sternum). Other times, that perhaps things are pushing upwards from below, my stomach. Just that there’s something there. It’s not that bad. Sometimes it feels like it’s something, other times, it seems like it’s gas, or air, and all I need is one or two big burps and all will be well. I mostly started to notice it when I opened a new bottle of my vitamin K2 and took a capsule that evening. It just felt like it never went all the way down and I had to drink a lot of water. Since then (2-5 days ago), it does feel like something is still there (the throat, but just as often, lower down). I will probably ditch that bottle of K2 and maybe get a new one, just...cause.

I should add that about this same time, I started using a full face mask for my sleep apnea. I was using a nasal wisp until then, but it just got too uncomfortable. Last night, in addition to lowering the pressure, I decided to begin using the mouth tape again as well, so I the air rushing in through the hose is not going down my mouth. I suppose aerophagia is still somehow possible, though I'm not sure how. Also, I don't feel particularly anxious right now, but a couple of days ago at work, I was for sure.

I'm extremely annoyed about this!

The reason I'm writing is mostly to hear from others with confirmed GERD. The above description is my main symptom. I never or rarely have any kind of burning sensation. It's more of a "globulus" feeling. Have others had this same symptom? What tests are useful? Barium swallow? I'm somewhat reluctant to do another EGD, since it was only 3 years ago.

My last EGD was in the Fall of 2019 and I'm only now reading it in detail (I had a long talk with the doc at the time, which satisfied me) and he took biopsies of my upper and lower esophagus. Gee, I guess he was concerned enough to do biopsies? Have others on here had biopsies of their esophagus? Anyway, it noted "mild irritation changes identified on the PAS stain. There is loss of glycogen." for both upper and lower. I don't know what that means. He did say I have mild GERD, but I could not (and cannot, until now) recall feeling many symptoms of GERD.

My weight / BMI is normal. I feel like I always eat gluten-free. My main "sin" is sugar, but I do go on occasional sugar fasts, and other than that, I do not drink juice, sodas, Gatorade and eat tons of vegetables. I try to stay away from coffee, and average 1-2 a week. I swam a lot during the summer, but have slacked off vigorous exercise since then, though I do walk a lot.

ETA: Like most, I do have a hiatal hernia. At the last EGD, he said either he didn't see it or I can't remember what he said. (!)

Any commentaries are much appreciated.

Plumbago

 

Edited December 9, 2022 by plumbago