Severity of Celiac Joint Pain

[emma6]

hey does anyone else have really bad joint pain? and could describe what their pain feels like or experiences with joint pain?

i've been going round in circles with doctors all year about my joint pain. none of them think celiac disease could be causing it. i just dont know where to turn anymore

i've had mild pain in both knees since 2012, had xrays and an MRI with nothing significant showing up. was told it was patellofemoral pain syndrome saw a Physiotherapist in october 2015 doing the exercises for one appointment made it so much worse i have not been able to work, drive, walk up stairs since. i started getting the same pain in both elbows in  january 2016, now i can't even beat an egg or do the dishes without being in terrible pain for hours afterwards. every doctor i have seen says it is just tennis elbow. i tested negative for Rheumatoid factor in july and dont have swelling or typical arthritis symptoms so they won't give me a rheumatologist referral. i've seen a sports physician and done physio exercises for a year now with no progress at all the more i do the exercise the worse it gets. going for a walk every day has helped a little.

i tested positive for celiac in july and have been gluten free for 4 months with no improvement but my levels are still very high so i'm really hoping the joint pain is celiac related and will start to get better, although i am now getting mild pain in my hip.

 

[cyclinglady]

I would put my money on celiac disease.  Four months into the gluten-free diet is such a short time.  You need a year or longer to resolve most issues.  

Use the search box to look for joint pain.  Lots of members had it and it resolved.  

[emma6]

will do! thanks so much

[cristiana]

Hi Emma

I just wanted to chime in to encourage you that although you may be having joint pain it may not persist.

I gave up gluten in May 2013 after being diagnosed with celiac disease that April.  Within months I started to get searing pain in my sacroliac joints and pain that referred to all sorts of other sites.

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The pain was so bad that I convinced myself I must have something dreadfully wrong with me (I even thought it might be my kidneys packing up!) but kept walking (my favourite exercise) when in actual fact I think I should have been gentler on myself at the time. I remember on a couple of walks just sitting on the ground crying in pain and despair!  Glad it was in the middle of the countryside and no-one else was around!

I've had peculiar pain in my ribs too -  a doctor suggested shingles without the rash - I'm not sure but it all finally got a lot better after about a year.  

I found the pain caused a viscious circle as I would tense up and it would make things worse. I often felt worse after a day at home having had time to think about it  than after a day spent with other people. I found warm baths with a good handful of magnesium (Epsom Salts) very helpful. I also found a topical NSAID gel helpful - I can't take NSAIDs orally.  It is good to try to eat anti-inflammatory foods but I would also say read up about ginger in particular and its effects on joint pain, I think there may be something in trying to get more of that into one's diet.  A few slices of ginger in hot water is a very pleasant, comforting  drink.

 

 

 

 

[emma6]

16 hours ago, cristiana said:

Hi Emma

I just wanted to chime in to encourage you that although you may be having joint pain it may not persist.

I gave up gluten in May 2013 after being diagnosed with celiac disease that April.  Within months I started to get searing pain in my sacroliac joints and pain that referred to all sorts of other sites.

Open Original Shared Link

The pain was so bad that I convinced myself I must have something dreadfully wrong with me (I even thought it might be my kidneys packing up!) but kept walking (my favourite exercise) when in actual fact I think I should have been gentler on myself at the time. I remember on a couple of walks just sitting on the ground crying in pain and despair!  Glad it was in the middle of the countryside and no-one else was around!

I've had peculiar pain in my ribs too -  a doctor suggested shingles without the rash - I'm not sure but it all finally got a lot better after about a year.  

I found the pain caused a viscious circle as I would tense up and it would make things worse. I often felt worse after a day at home having had time to think about it  than after a day spent with other people. I found warm baths with a good handful of magnesium (Epsom Salts) very helpful. I also found a topical NSAID gel helpful - I can't take NSAIDs orally.  It is good to try to eat anti-inflammatory foods but I would also say read up about ginger in particular and its effects on joint pain, I think there may be something in trying to get more of that into one's diet.  A few slices of ginger in hot water is a very pleasant, comforting  drink.

thats really nice to hear, i guess i need to be more patient and hope it gets better. thank you for the advice, i do used topical NSAID gel aswell that and ice seems to help the most. i can't either any sort of oral pain killer makes me feel so sick and nauseous for hours then i feel worse and it doesn't help the pain no doctor seems to understand that is even possible. thats really interesting about ginger i will give it a try i have also heard similar things about tumeric. thank you!

[Ennis-TX]

I had more muscle aches then joint, sometimes the knees felt like glass in them under the knee caps or my hands would stiffen feel slow and painful. I can't take NSAIDs either due to internal bleeding issues. I did the Epsom soak back then along with oral magnesium supplementation in drinks. I now take a collagen supplement and a joint support supplement. I heard figs help with joint issues also and have about 1-2 a day. >.> I honestly am addicted to walking/pacing as it helps me with anxiety and relaxes me to read while walking.

[GFinDC]

Hi Emma,

Years ago I had joint pain in my knees and shoulders.  It went away after I stopped eating nightshades (potatoes, tomatoes, peppers, eggplant).  Nightshades have an alkaloid in them that many people can't tolerate.  It may take a month or so for the pain to subside after stopping nightshades.  The alkaloids have to be processed by your liver to remove them from the body.  That isn't always a fast process.  I don't think soy is very helpful for joints either.

More recently I had pain in my shoulders that got better after upping my vitamin D intake.

[Rochel T]

I too have been suffering with joint pain for about a year now.

 

 I just had a consultation with a gastroenterologist and he said that it was most likely IBS not Celiac and he is sending me for the Celiac blood test to rule it out.

If I behave and stay on the gluten free diet, my joint pain calms down and even the Bursitis in my hips no longer bothers me. My skin has cleared up and I have lost almost 20 lbs since January. So all in all, I feel better if I stay on the diet, but it has taken since July of this year to really notice the good effects. It takes a long time for the pain to go away.

[emma6]

20 hours ago, Ennis_TX said:

I had more muscle aches then joint, sometimes the knees felt like glass in them under the knee caps or my hands would stiffen feel slow and painful. I can't take NSAIDs either due to internal bleeding issues. I did the Epsom soak back then along with oral magnesium supplementation in drinks. I now take a collagen supplement and a joint support supplement. I heard figs help with joint issues also and have about 1-2 a day. >.> I honestly am addicted to walking/pacing as it helps me with anxiety and relaxes me to read while walking.

great eatingfigs sound good i have been thinking of trying collagen supplements but after researching it i couldn't decide if it would be worth it. walking definetely helps me more than anything else its the only things i have seen improvements from. thank you

19 hours ago, GFinDC said:

Hi Emma,

Years ago I had joint pain in my knees and shoulders.  It went away after I stopped eating nightshades (potatoes, tomatoes, peppers, eggplant).  Nightshades have an alkaloid in them that many people can't tolerate.  It may take a month or so for the pain to subside after stopping nightshades.  The alkaloids have to be processed by your liver to remove them from the body.  That isn't always a fast process.  I don't think soy is very helpful for joints either.

More recently I had pain in my shoulders that got better after upping my vitamin D intake.

thank you! thats really interesting, i never even thought about nightshades i will definetely give that a go. my vitamin d is good, although i am eating soy but cut that out for about 4 months this year with no improvements so im happy to keep eating that at this point.

15 hours ago, Rochel T said:

I too have been suffering with joint pain for about a year now.

 

 I just had a consultation with a gastroenterologist and he said that it was most likely IBS not Celiac and he is sending me for the Celiac blood test to rule it out.

If I behave and stay on the gluten free diet, my joint pain calms down and even the Bursitis in my hips no longer bothers me. My skin has cleared up and I have lost almost 20 lbs since January. So all in all, I feel better if I stay on the diet, but it has taken since July of this year to really notice the good effects. It takes a long time for the pain to go away.

good to hear im glad you are feeling a bit better from being gluten free

[cyclinglady]

I have taught Water Aerobics and Water Arthritis for 25 years.  I highly recommend it.  It puts less  stress on your joints.    My students swear that it helps arthritis, heal from surgeries like knee replacement, back issues, Fibro, and MS.  Helps with balance too.  Find a class and a warm pool.  It is fun and social and it is not just for old people.  Families participate in my classes too.  Get those kids to excercise for life!   ?

[obesiac]

Yes , In my pre and early (self ) dianosis stages I would get severe joint pain randomly without cause. I remember deep hip pain so bad I could hardly walk. The pain felt like it was broad across the whole area , ache like, a good 8,9 on a scale of 1 to 10. I dont get the joint pain as bad as I used to . I am trying to get the right nutrients always. 

My back would also go out with just a little wrong twist. Bed ridden for 3 days , usually. Thankfully that has not been happening.