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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

    Erica Johnson
    Newest Member
    Erica Johnson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.