Shoulder ache, costochondritis

[TheFuzz]

All my life I've had this dull ache that will show up in my shoulders, usually after physical activity.  It only happened once every year or 2.  It lasts 1 -5 days.  I was diagnosed celiac about 10 years ago and have been gluten-free since then.  Last Thursday I went for gluten-free pizza at a place I have been several times before.  A few hours later on my bike ride home the ache appeared.  The next day I had mild GI symptoms gluten exposure. 

On Saturday I went skiing, the shoulder ache had not gone away.  During some very intense skiing the ache moved from my shoulder to my chest.  Heavy breathing started to hurt.  I was short no breath due to the pain of deep inhalation.  I went to the patrol shack to get some advil, as I have found this helps, and at the mention of chest pain and exertion I had my ski day cut very short!  I got a preliminary workup, then sent to the hospital where they eventually cleared me of all heart and clot potential issues.  But I was sent home without an answer in pain.  Since then I've had a few rough days but have improved today. 

I went to my family doctor yesterday, and he could activate a pain point in my rib.  He still thought it was due to an injury, but I did not injure anything, and to me, it was directly related to the earlier shoulder pain.  He did admit that celiac can cause inflammation which may be a contributing factor.

I had this occur last year, though not quite as severe.  I'm sure it will happen again.  My dad's wife also has celiac, and she had almost the exact same thing happen while cross country skiing a couple years ago.  Eventually a doctor diagnosed it as costochondritis.

My question is, have others experienced this dull shoulder ache?  I've read a few accounts of costochondritis and celiac, so it seems they are related, but no one ever mentions it being preceded by an achy shoulder.  I know the next time it happens I will be avoiding any activity, as that seems to escalate it.

[trents]

I guess one idea I have is to consider going on an anti inflammatory diet. There are certain foods that tend to increase inflammation that should be avoided and there are probably others that tend to quell inflammation. This may be one of those things you will have to live with but learn to manage better. Your idea of avoiding strenuous physical activity during flareups is certainly common sense and it might also be wise to take NSAIDs at the first sign of an episode.

[TheFuzz]

I'll be paying more attention to the pain when it comes on to see if it is directly associated with a potential gluten event.  I'm very careful, other than the gamble of going out for a meal, which is rare.  I did star taking Advil as soon as it came on, and took one the morning I went skiing.  it's certainly not 100% relief.  My doctor also gave me topical cream which I think helps.

[notme]

yes, me!  I have a weird symptom of my neck and shoulders ache when I get glutened - popped a gummy bear in my mouth the other day, dumb me, then I read the ingredients.  some gummy bears are gluten free, these were not.  spit out gummy bear, rinse out mouth, etc, I must have gotten a little, because the next day, there was my telltale neck ache.  so, it does happen to me and it is because of eating gluten.  for me.  maybe for you, too.  

[TheFuzz]

Thanks, good to know I'm not alone with this reaction.  I've spent years explaining it to doctors and they kinda ignore it.

[TheFuzz]

So my pain has moved on, and for the past month I've had a swollen baby toe, incredibly sore ankles, wrists, a shoulder, and my knee is swollen and popping.  My doctor sent me for a bunch of blood tests, but nothing was really abnormal.  No sign of gluten ingestion either.  I've felt reduced energy overall, and some days I can barely walk.  Anyone have any ideas?  Really struggling here.

[trents]

Has anyone checked you out for CPS (Chronic Pain Syndrome)?

[TheFuzz]

No, I had never heard of that.  But it looks like just a collection of various things that can go on a long time?

[trents]

Yes, and some doctors deny it is a real disease entity. But more and more are recognizing it as a medical reality. By definition, a syndrome is a collection of symptoms that is difficult to find an underlying cause for. Those of us with celiac disease understand that many medical problems have an autoimmune base. And the list is growing.

[Posterboy]

On 3/10/2020 at 9:55 AM, TheFuzz said:

On Saturday I went skiing, the shoulder ache had not gone away.  During some very intense skiing the ache moved from my shoulder to my chest.  Heavy breathing started to hurt.  I was short no breath due to the pain of deep inhalation.  I went to the patrol shack to get some advil, as I have found this helps, and at the mention of chest pain and exertion I had my ski day cut very short!  I got a preliminary workup, then sent to the hospital where they eventually cleared me of all heart and clot potential issues.  But I was sent home without an answer in pain.  Since then I've had a few rough days but have improved today. 

I went to my family doctor yesterday, and he could activate a pain point in my rib.  He still thought it was due to an injury, but I did not injure anything, and to me, it was directly related to the earlier shoulder pain.  He did admit that celiac can cause inflammation which may be a contributing factor.

TheFuzz,

Since activity/exercise seems to make it worse or prolongs it....you might have undiagnosed Rhabdo...

Here is a few links about it....it is not generally from "lite" activity...but it still could be...

https://www.healthline.com/health/rhabdomyolysis#causes

It is usually from trauma, or HIT training etc...Here is case of light activity causing it...

https://www.ncbi.nlm.nih.gov/pubmed/28235546

If this is your problem you will also have "dark Tea colored" urine in the next few hours to days...after your activity...

https://www.popsci.com/exercise-muscle-pain-rhabdomyolysis/

Try taking Riboflavin to see if it helps....some forms of Rhabdo (usually presenting as an adult called late onset) can be treated by taking Riboflavin...

https://www.jstage.jst.go.jp/article/internalmedicine/50/21/50_21_2663/_pdf/-char/en

Somebody else had this problem a few months ago....so I made a note of it...in case it ever came back up again...

I hope this is helpful but it is not medical advise.

Posterboy,

[cyclinglady]

 

Consider getting your antibodies checked for connective tissue disorders if this does not resolve in a few months.    Something else can be brewing.   My last gluten exposure caused a variety of issues.  Some would not resolve.  Almost a year later, A repeat endoscopy revealed a healed small intestine but found autoimmune Gastritis.  I learned that not everything is due to celiac disease.  

 

[trents]

24 minutes ago, cyclinglady said:

 

Consider getting your antibodies checked for connective tissue disorders if this does not resolve in a few months.    Something else can be brewing.   My last gluten exposure caused a variety of issues.  Some would not resolve.  Almost a year later, A repeat endoscopy revealed a healed small intestine but found autoimmune Gastritis.  I learned that not everything is due to celiac disease.  

I'm glad you said that CL. That's one of my frustrations since participating on this forum. People with celiac disease forget that things go wrong with their body that are not related to celiac disease. We can get medically myopic. 

24 minutes ago, cyclinglady said:

 

 

[cyclinglady]

@trents

So, true.  Not just those with celiac disease,  but doctors can also often forget that you can develop other autoimmune disorders or other illnesses.    My doctors are always monitoring me for other new autoimmune disorders.  

 

[TheFuzz]

Thanks all, Rhabdo sounds more like a muscle issue, and I haven't had any dark urine.  I did a urinalysis when I was in the hospital and it was fine.  I've got a phone appointment today, so maybe I'll get some more ideas.  Nothing on my previous blood tests were out of line.  I also take pantaloc, and one of the rarer side effects is joint pain, so I'm going to mention that.

[Posterboy]

TheFuzz,

In that case....you might try taking some Magnesium Citrate with meals or Magnesium Glycinate anytime it is convenient....Long term use of PPI's can cause you to have low Magnesium levels....which could be causing your Joint/Bone pain.

Here is a couple links about it....

https://www.drnewtons.com/blog/magnesium-deficiency-could-be-causing-your-joint-pain-2/

https://www.health.harvard.edu/staying-healthy/do-ppis-have-long-term-side-effects

I had early onset arthritis symptoms in my late 20s....like creaking joints...and shin pain (splint's) etc... and muscle cramps etc...

After taking some Magnesium Citrate with meals...my bone paint/creaking joints got better.

EnnisTx on this forum would be a good resource of how to reduce them so you can get off of them for good...and he knows a lot about the best way to take Magnesium and testify how it has helped him.

Going Low CARB (they ferment) can help you manage your heartburn...

Search on Celiac.com for heartburn and you will find a lot of good threads on the the topic.

I hope this is helpful but it is not medical advise.

Posterboy,

[TheFuzz]

Interesting, thank you.  After I was diagnosed I took magnesium and B12, because I had weird nerve issues.  Once they went away I just switched to a daily multivitamin, but maybe it's worth trying those 2 again for a boost.

Nothing resolved at my appointment today, but I think I am being referred to a rhumatologist just to see if they have any ideas.  There was also discussion of maybe seeing a GI doc again.  So at least I haven't been hung out to dry yet!

[trents]

A good sign that they they aren't (yet, anyway) treating you dismissively. 

[TheFuzz]

So I most likely have Rheumatoid Arthritis.  I just did a few more tests today to try to confirm it, and rule out Lupus.  So ya, good to have an answer, but damn.  Now I'm on prednisone, hydroxychloroqueine(I have something in common with Trump!) and methohtrexate.  The last 2 will probably be permanent.  Sigh.  The side effects sound kinda sucky.  I've been taking prednisone since Friday and the pain has gotten a bit better.  Sounds like RA, being an immune disorder, is not all that uncommon to show up with celiac.  At least I caught it early, so I shouldn't have any permanent joint damage.

[trents]

Well, at least you have some answers.

[Wynne]

On 3/10/2020 at 9:55 AM, TheFuzz said:

All my life I've had this dull ache that will show up in my shoulders, usually after physical activity.  It only happened once every year or 2.  It lasts 1 -5 days.  I was diagnosed celiac about 10 years ago and have been gluten-free since then.  Last Thursday I went for gluten-free pizza at a place I have been several times before.  A few hours later on my bike ride home the ache appeared.  The next day I had mild GI symptoms gluten exposure. 

On Saturday I went skiing, the shoulder ache had not gone away.  During some very intense skiing the ache moved from my shoulder to my chest.  Heavy breathing started to hurt.  I was short no breath due to the pain of deep inhalation.  I went to the patrol shack to get some advil, as I have found this helps, and at the mention of chest pain and exertion I had my ski day cut very short!  I got a preliminary workup, then sent to the hospital where they eventually cleared me of all heart and clot potential issues.  But I was sent home without an answer in pain.  Since then I've had a few rough days but have improved today. 

I went to my family doctor yesterday, and he could activate a pain point in my rib.  He still thought it was due to an injury, but I did not injure anything, and to me, it was directly related to the earlier shoulder pain.  He did admit that celiac can cause inflammation which may be a contributing factor.

I had this occur last year, though not quite as severe.  I'm sure it will happen again.  My dad's wife also has celiac, and she had almost the exact same thing happen while cross country skiing a couple years ago.  Eventually a doctor diagnosed it as costochondritis.

My question is, have others experienced this dull shoulder ache?  I've read a few accounts of costochondritis and celiac, so it seems they are related, but no one ever mentions it being preceded by an achy shoulder.  I know the next time it happens I will be avoiding any activity, as that seems to escalate it.

I have that condition, too! My chest hurts for no reason, I get short of breath (yet my heart rate is fine) and this summer my collar bone and shoulder was killing me for days. I really hurt under my left rib cage at times. Feels like someone is pushing it hard. They tell me to just take Advil. I can't because aspirin products make my colitis act up! I am not diagnosed Celiac, but I am gluten and dairy intolerant. 

[TheFuzz]

Part of my pain was caused by Pleurisy(diagnosed from CT), which is similar to what you are describing.  It's gotten a lot better, but I still have a few sore points.

[MADMOM]

On 3/10/2020 at 10:55 AM, TheFuzz said:

All my life I've had this dull ache that will show up in my shoulders, usually after physical activity.  It only happened once every year or 2.  It lasts 1 -5 days.  I was diagnosed celiac about 10 years ago and have been gluten-free since then.  Last Thursday I went for gluten-free pizza at a place I have been several times before.  A few hours later on my bike ride home the ache appeared.  The next day I had mild GI symptoms gluten exposure. 

On Saturday I went skiing, the shoulder ache had not gone away.  During some very intense skiing the ache moved from my shoulder to my chest.  Heavy breathing started to hurt.  I was short no breath due to the pain of deep inhalation.  I went to the patrol shack to get some advil, as I have found this helps, and at the mention of chest pain and exertion I had my ski day cut very short!  I got a preliminary workup, then sent to the hospital where they eventually cleared me of all heart and clot potential issues.  But I was sent home without an answer in pain.  Since then I've had a few rough days but have improved today. 

I went to my family doctor yesterday, and he could activate a pain point in my rib.  He still thought it was due to an injury, but I did not injure anything, and to me, it was directly related to the earlier shoulder pain.  He did admit that celiac can cause inflammation which may be a contributing factor.

I had this occur last year, though not quite as severe.  I'm sure it will happen again.  My dad's wife also has celiac, and she had almost the exact same thing happen while cross country skiing a couple years ago.  Eventually a doctor diagnosed it as costochondritis.

My question is, have others experienced this dull shoulder ache?  I've read a few accounts of costochondritis and celiac, so it seems they are related, but no one ever mentions it being preceded by an achy shoulder.  I know the next time it happens I will be avoiding any activity, as that seems to escalate it.

omg i was diagnosed this in jan of this year and i feel that dull ache in both shoulders at different times also in my chest - breast area like twinges - i  am also post menopause and still have symptoms from that as well but i can def understand what ur going through -i am actually relieved that others are experiencing it too 

[ChuckM]

On 3/10/2020 at 10:55 AM, TheFuzz said:

All my life I've had this dull ache that will show up in my shoulders, usually after physical activity.  It only happened once every year or 2.  It lasts 1 -5 days.  I was diagnosed celiac about 10 years ago and have been gluten-free since then.  Last Thursday I went for gluten-free pizza at a place I have been several times before.  A few hours later on my bike ride home the ache appeared.  The next day I had mild GI symptoms gluten exposure. 

On Saturday I went skiing, the shoulder ache had not gone away.  During some very intense skiing the ache moved from my shoulder to my chest.  Heavy breathing started to hurt.  I was short no breath due to the pain of deep inhalation.  I went to the patrol shack to get some advil, as I have found this helps, and at the mention of chest pain and exertion I had my ski day cut very short!  I got a preliminary workup, then sent to the hospital where they eventually cleared me of all heart and clot potential issues.  But I was sent home without an answer in pain.  Since then I've had a few rough days but have improved today. 

I went to my family doctor yesterday, and he could activate a pain point in my rib.  He still thought it was due to an injury, but I did not injure anything, and to me, it was directly related to the earlier shoulder pain.  He did admit that celiac can cause inflammation which may be a contributing factor.

I had this occur last year, though not quite as severe.  I'm sure it will happen again.  My dad's wife also has celiac, and she had almost the exact same thing happen while cross country skiing a couple years ago.  Eventually a doctor diagnosed it as costochondritis.

My question is, have others experienced this dull shoulder ache?  I've read a few accounts of costochondritis and celiac, so it seems they are related, but no one ever mentions it being preceded by an achy shoulder.  I know the next time it happens I will be avoiding any activity, as that seems to escalate it.

Please let me know how you are doing. I have an ache in my left chest under my collarbone which comes and goes and has bothered me for years. I have costochondritis with very sore ribs and have for years but I’m believing it’s gluten which has made it more pronounced over the past few years.  I’m miserable often cause of it. 

[ChuckM]

On 8/20/2020 at 2:40 PM, Wynne said:

I have that condition, too! My chest hurts for no reason, I get short of breath (yet my heart rate is fine) and this summer my collar bone and shoulder was killing me for days. I really hurt under my left rib cage at times. Feels like someone is pushing it hard. They tell me to just take Advil. I can't because aspirin products make my colitis act up! I am not diagnosed Celiac, but I am gluten and dairy intolerant. 

Your symptoms are mine…almost as if I wrote this. Let me know how you are doing. It’s a miserable feeling when your chest is compromised. 

[MADMOM]

i’ve felt that as well prior to my celiac dx and in the beginning stages of going gluten free - although it has gone away almost completely but on occasion i still feel it -