Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sacroiliac Joint

cristiana

Recommended Posts

cristiana Veteran
cristiana
Posted

Well, having experienced all sorts of weird pain in my left rib and left hip/groin area which sometimes made me feel as if my skin were on fire but there was no rash, I have seen a really good chiropractor who has discovered that I have inflammation in my left sacroiliac joint - and boy did I feel it!  Yet I was completely unaware of it until she touched me there.  She thinks I sprained my sacroiliac joint some time back and it has just got worse and worse (I did sprain it about three years ago).   I would not expect her to know about the relationship to celiac, this kind of knowledge is probably quite specialised, but I did read somewhere else on this website that there is a connection, that lots of celiacs have this kind of pain.   

 

Apart from steering clear of gluten, having this treatment and doing some exercises, can anyone help me with any other advice on how to try to get better.  I feel quite pleased that at last someone has been able to see something is amiss, up to now all my tests have been clear - even MRIs of the lumbar vetebrae - certainly not complaining about that, but I didn't understand why I was in so much pain.  Such weird pain too, this kind of itchy soreness.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted

Well, having experienced all sorts of weird pain in my left rib and left hip/groin area which sometimes made me feel as if my skin were on fire but there was no rash, I have seen a really good chiropractor who has discovered that I have inflammation in my left sacroiliac joint - and boy did I feel it!  Yet I was completely unaware of it until she touched me there.  She thinks I sprained my sacroiliac joint some time back and it has just got worse and worse (I did sprain it about three years ago).   I would not expect her to know about the relationship to celiac, this kind of knowledge is probably quite specialised, but I did read somewhere else on this website that there is a connection, that lots of celiacs have this kind of pain.   

 

Apart from steering clear of gluten, having this treatment and doing some exercises, can anyone help me with any other advice on how to try to get better.  I feel quite pleased that at last someone has been able to see something is amiss, up to now all my tests have been clear - even MRIs of the lumbar vetebrae - certainly not complaining about that, but I didn't understand why I was in so much pain.  Such weird pain too, this kind of itchy soreness.

 

 

Hi Christiana.

 

The only other treatment I know of is taking an anit-inflammatory med regularly and using this support belt. This link is only a link to the product.  I'm not suggesting you get it at e.bay.

 

Open Original Shared Link

 

It was recommended to me by my Doc. when I had Sacroiliitis.

 

Good Luck.

 

Colleen

greenbeanie Enthusiast
greenbeanie
Posted

I don't know of anything to help it along, but my SI joint pain improved a lot after a few months gluten free. I'd had it for about 20 years, and the intensity varied but at times it was excruciating. Six cortisone shots, physical therapy, and the support belt all failed to help at all. The physical therapist actually sent me away after a few weeks because the exercises were clearly making it worse. The belt made it worse too. The cortisone shots did nothing at all. I get sick from NSAIDS so couldn't try that route. Ironically, pregnancy made it much, much better (temporarily). I was totally surprised by this because my doctor had warned that pregnancy usually makes such pain worse because it loosens the joints. I didn't know at the time that dramatic improvements in long-standing symptoms during pregnancy can indicate an autoimmune origin of the problem. Shortly after giving birth, the SI pain worsened again. I've now been gluten-free for a year, and the pain has gone way down to about the level it was during pregnancy. The change wasn't immediate, though.

Time may be your best ally in this. Good luck, and I hope you get some relief soon!

cristiana Veteran
cristiana
Posted
  • Author

Thanks so much, fellow (ex-)sufferers.  So interesting greenbeanie that you had relief after going gluten free.  I am just wondering if trace amounts of gluten are getting in and making things worse.   I have to share a kitchen with my family of gluten eaters and I'm now wondering about crumbs, gluten in the oven, on drawer handles etc.  Clearly what is going on in my joint is inflammation, the possible gluten connection is interesting.  I guess gluten causes inflammation in other places than just the gut.

GF Lover Rising Star
GF Lover
Posted

Thanks so much, fellow (ex-)sufferers.  So interesting greenbeanie that you had relief after going gluten free.  I am just wondering if trace amounts of gluten are getting in and making things worse.   I have to share a kitchen with my family of gluten eaters and I'm now wondering about crumbs, gluten in the oven, on drawer handles etc.  Clearly what is going on in my joint is inflammation, the possible gluten connection is interesting.  I guess gluten causes inflammation in other places than just the gut.

 

Cristiana.

 

My Sacroiliac pain was relieved also.  It does take some time depending on the severity.  Have you read the Newbie 101 thread under the Coping Forum?  It may help you learn procedures to avoid cross contamination.  Also do a search on the thread for "shared Kitchen".

 

Good Luck.

 

Colleen

cristiana Veteran
cristiana
Posted
  • Author

Thanks so much Colleen, I must read that - never have, even though I've been reading everything else!  Perhaps that's where I have been going wrong!

GF Lover Rising Star
GF Lover
Posted

Your Welcome Cristiana.  I have a shared kitchen myself.  If you need help with something, just ask.

 

Colleen

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


SMRI Collaborator
SMRI
Posted

Oh, how I would LOVE to get some relief from my back issues!!  Mine started when I was in high school, in the dark ages.  I've had off and on problems since.  Some days I can hardly get out of bed it hurts so badly, other days, it's fine.  I wonder if it's Celiac related??  I've been to a very good massage therapist and she was able to give me some relief about 5 years ago but has been unsuccessful the past year, which is about the same time as my other symptoms I now know are celiac disease flared up.  

GF Lover Rising Star
GF Lover
Posted

I don't want to give false hope here.  The problems we are talking about are due to inflammation in the area surrounding the sacrum which puts pressure on it and causes the pain.  When the pain gets severe people usually start with Cortisone shots in the area, I had multiple shots in the hip bursar sacs and in the peri-formis muscles which are the ones that start at your spine and wrap around to your hips, they lay at the top of the butt.  Again this is due to inflammation.  If all your AI diseases are in check then you should get relief from this particular problem.

 

Good luck.

 

Colleen

cristiana Veteran
cristiana
Posted
  • Author

So for clarification, for a celiac, having traces of gluten in the diet not only inflames the gut but can arguably also cause any other part of  the body to become inflamed - for example, the sacroiliac joint?   

GF Lover Rising Star
GF Lover
Posted

Yes!!!.  Celiac is an Autoimmune Disease.  Autoimmune Diseases attack one's own body causing inflammation and other symptoms.  I've been glutened about 3 or 4 times.  Each time all of my other AI Diseases flare up causing all kinds of pain and takes about a month for everything to calm down again.  Other things can cause your autoimmune system to flare also.  

 

For instance, my immune system recently started going crazy due to some medical treatments I had.  With that came all of my Sjogrens symptoms, migraines, bowel issue, muscle pain, joint pain etc.  It's all connected.  That's why we always tell new people to check their thyroid.  It is also autoimmune and can cause many issues similar to Celiac and other AI's. 

 

I hope that made sense  :)

 

Colleen

cristiana Veteran
cristiana
Posted
  • Author

Yes!!!.  Celiac is an Autoimmune Disease.  Autoimmune Diseases attack one's own body causing inflammation and other symptoms.  I've been glutened about 3 or 4 times.  Each time all of my other AI Diseases flare up causing all kinds of pain and takes about a month for everything to calm down again.  Other things can cause your autoimmune system to flare also.  

 

For instance, my immune system recently started going crazy due to some medical treatments I had.  With that came all of my Sjogrens symptoms, migraines, bowel issue, muscle pain, joint pain etc.  It's all connected.  That's why we always tell new people to check their thyroid.  It is also autoimmune and can cause many issues similar to Celiac and other AI's. 

 

I hope that made sense  :)

 

Colleen

 

Total sense - a 'lightbulb moment' in fact!  Thank you so much.   I am definitely not going to eat out until this joint is better because I am sure that has been the cause of my most recent CC and I have started washing my hands properly every time I make my children's toast.  

GF Lover Rising Star
GF Lover
Posted

Your Welcome.  And yes, do take care when handling non-gluten foods.  You have gone through your Kitchen and made appropriate changes to keep yourself safe, right?

 

Be careful eating out and work on your protocol when talking to Restaurant employees.  It's a science  :lol:

 

Colleen

cristiana Veteran
cristiana
Posted
  • Author

Your Welcome.  And yes, do take care when handling non-gluten foods.  You have gone through your Kitchen and made appropriate changes to keep yourself safe, right?

 

Be careful eating out and work on your protocol when talking to Restaurant employees.  It's a science  :lol:

 

Colleen

 

This new setback has made me look at things again, I was really really strict at the beginning as I kept having blood test results with slightly elevated gamma globulins but the electrphoresis tests didn't show any spikes, just diffuse inflammation.  Thankfully the blood straightened out nicely when I went gluten free and I thought, well, I have this under control now.  My consultant told me he sees this in celiac blood results from time to time but it should resolve with diet.  Then inflammation went up again very slightly in April, although still within safe levels, so obviously something isn't quite right, now I have this pain I am determined to really be ultra careful.  My husband has seen how I am struggling and says that during the summer holidays he wants everyone in the family to go gluten free just to give me a break but you should have seen the children's faces, they can't stand gluten free bread!  

GF Lover Rising Star
GF Lover
Posted

Ha!  Yea, I bet the kids freaked out.  It is very possible to have a shared kitchen.  You just need to be extra diligent of cc.  I'm assuming you have read the Newbie 101 thread.  Maybe a refresher will help.

 

Good luck.

 

Colleen

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748
    Eliana123
    Newest Member
    Eliana123
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.