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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Sacroiliac Joint
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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.

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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.

 

http://www.ebay.com/itm/Pro-Tec-SI-Sacroiliac-Back-Belt-Compression-Wrap-Lower-Lumbar-Support-/131019876140?pt=LH_DefaultDomain_0&var=&hash=item1e8164a72c

 

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

 

Good Luck.

 

Colleen

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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!

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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.

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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

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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!

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

 

Colleen

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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.  

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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

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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?   

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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

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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.  

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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

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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!  

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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

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