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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anyone Else Have Si Joint/low Back Pain Problems?
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18 posts in this topic

For 2 years now I've had increasing difficulty walking and standing for more than 15 minutes at a stretch due to terrible very low back pain and tightness. I have recently been told the area of the back that is bothering me is called the Sacroiliac Joint, or "S.I. Joint." I get a feeling on either side of the tailbone area that I am being "pushed In" and cannot continue to walk feeling that way. I feel unsteady on my feet and my muscles ache so badly back there that I must sit down.

Anyone else have this? I have no pain or swelling or problems with any other joints at all...just the low back. It also acts up if I try to sleep on my stomach, which I can no longer do because of this. But most of the problem is with the ability to walk regularly.

I've recently given steroid injections in the S.I. Joint a try, but so far have seen no results. The other thing suggested to me was Celebrex, but that is a double edged sword since it is bad for people with intestinal disorders, so I have passed on that. Any suggestions?

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Gillian,

I too have lower back pain but not quite what you have described and of course not to the degree of pain you explained. What does your doc say about it?

I am not sure what to tell you about the pain you are experiencing but here is a link that list other diseases'/problems that can be associated with celiac disease. I hope this helps Other disease's related to celiac disease

I hope you begin to feel better soon :)

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Hi Gillian,

I was wondering if you have tried a chiropractor? I used to have terrible lower back pain. And it was getting to the point that I couldn't walk without being in horrible pain. It ended up that my pelvis was tilted, and I had a few pinched nerves. I saw the chiropractor for a few months, a couple times a week, and it got better. I very rarely have any back pain now. Just something to try. It sure beats medication, and it worked better for me.

God bless,

Mariann :)

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Hi Gillian...

I too have si-joint problems. I thought it would go away eventually but it just got progressively worse. I finally convinced my doctor to write me a referral to a physical therapist... and hun.. you should to! It saved me from a lot of misery!!!

I was started on 2 day a week treatments... they did electro therapy and heat ot help your back muscles relax, massage, body modifications by moving and what not, as well as excersises... and once I began within a few weeks I saw incredable change. I want thinking all the time about my back pain. It was wonderful.

I wouldnt recommend storrping once you have started thought because it goes right back to the way it was... I stopped because I was really sick for only a week and I was in bad shape!

The therapy has helped me so much and also makes me feel good about myself. i feel better, am getting stronger muscles, and I can start to do things on my own again.

Good luck!

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Yep. The right SI joint would "stick" causing the left one to be put into an odd angle that hurt like the dickens. (My orthopaedist, good doctor though he is, didn't notice this, but the PT he sent me to did.) As a separate issue, I also have tailbone pain, because of an enlarged joint "two up from the bottom", as it were. Since doing the PT, I've seen a podiatrist (a different PT suggested it for my knees as she thought I might have a touch of suppination), and my back has been doing better with the inserts in my shoes as well.

I'm a little confused about the location of the pain, as the SI joints and tailbone aren't terribly close, but if you're positive that it's the SI joint (not the tailbone) causing pain, I would - like SadiesMomma - DEFINITELY encourage you to get physical therapy. (The only reason I don't say the same thing if it's tailbone pain is that it's pretty hard to find a PT who is well trained to deal with the tailbone. Heck... it's right down there "in the crack" so that some PT's just won't treat it.)

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I have had problems with SI joint arthritis for 15+ years! I had seen orthopedic surgeons, sports medicine specialists, chiropractors, physical therapists (oh, and my husband is a spine doctor!) I have had cortisone shots, exercise programs, etc, etc....

Bottom line....I haven't had ANY pain in the last six months since going gluten-free! I found an article that mentions that SI pain is associated with Celiac...news to me and to most of my doctor colleagues! I am now back to being able to exericise and walk without problem...(I used to have pain after 15-20 minutes of walking...not good for a girl in her 30s)

I would recommend the physical therapist...do the exercises, but be really strict about the gluten-free diet too!

Good luck!

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Thanks to all. I begin PT on Monday, and am hoping it will make a huge difference. I'm only 30 and have not taken a long walk for over a year and a half. I don't even know what exactly is wrong with the SI Joint, if it's inflammation or what. But it feels so distorted and pushed in back there...the area is just a little above the tailbone, to the right and left side, equal amount of pain on each side. The tailbone area pain flares up when I turn onto my stomach.

Aside from PT, does anyone know of other therapies that would work? What does the electro therapy consist of? I've also heard about ultrasound therapy and would like to try that. I've been to a chiropractor for about 6 sessions, and there was no change.

Also I seem to do slightly better when I'm in shoes that lift my ankles off the ground a little, like heels. Seems to feel better when the pressure is mostly on the front of the feet. Either way, though, I don't last long!

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If you notice a difference with shoes, do try to get in to see a podiatrist and be evaluated. The feet are where everything else ends (so to speak) and a misalignment there can cause problems up the rest of your body. In PT, they'll often do a combination of heat to warm the joint, exercises, massage or manipulation, e-stim (the use of current through the affected part of the body to relieve some of the pain - there are different theories on exactly how it works, but it often works, at least for a while), and ice (depending on the exact problem). All the PT I went to started with either heat (then exercise) or exercise (depending on the joint), and ended with e-stim and ice. (BTW, you can get home e-stim units, though they aren't terribly cheap.)

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Some general comments on this S.I. / low back pain issue. First, the S.I. and "tail bone" are close, touching in fact! So a problem with one will/can affect the other. 2nd, if an S.I. block did not even give temporary relief then it is either not sacroiliitis or it is that and more! This is because the block is done with an anesthetic in the mixture! 3rd, have your physical therapist work on strengthening your hamstrings; usualy they strengthen the quads out of proportion to the hamstrings. That imbalance can cause this type of back pain. 4rth, see a physiatrist, preferably an interventional physiatrist. This type of physician is best trained for the evaluation and treatment of back pain. Ask your primary doc for a ref. to one. Hope this helps. Marc

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Hi, I had an MRI done about 3 years ago which showed degeneration in my L5 disk and also SI problems. I was just diagnosed with celiac disease last May, so I never knew what was causing my back issues (I'm only 25) but now, after reading your testimonies, I guess it could be a result of celiac disease. I've been having back pain since high school, but never knew what to do about it.

I've seen improvement since going gluten-free, but I still have trouble sitting for long periods--perhaps this is normal, though. I tried physical therapy, and it helped temporarily, but not long term. They did chiropractic work, the usual stretches, and also accupuncture. I think it was mostly stretching that helped--the accupuncture was really painful at times, but did occasionally seem to improve the pain.

Hope you find something that works for you!

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I too have had a numerous amount of therapy, elecrto, ultra, taken celebrex, you name it. I think that it is really important to pay attention while in therapy and to ask about ways to help yourself. I was on a four to five time a week basis, and some improvement came. Unfortunately, therapy can cost alot. So I would start out with it, but definitely keep researching and ask about home remedies and what doctors reccomend you do on your own. With joint problems, they will not go away no matter how much adjusting. They eventually will suggest surgery. Definitely keep an open mind.

Richard

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I also have the SI problem. I have *thinks* (I have a head cold and my brain is fried :(), sciatica in both hips. Mine is from working the nursing home for 5 years and doing all that lifting! I haven't noticed a correlation between my stomach acting up and the pain getting worse, just if I do a lot of lifting or do too much of my workout on my legs.

My doctor said this would get better with weight loss, but I've lost 46 pounds and it hasn't gotten better :(. Any idea *when* it will get better??

-Kel

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Wow 46 pounds... congrats!!! :D

too bad it hasnt helped your si-joint problems... Are you feeling better in general though?

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Wow 46 pounds... congrats!!! :D

too bad it hasnt helped your si-joint problems... Are you feeling better in general though?

Thanks :)

I feel great otherewise! I went from 278 to where I currently am at 232 since November. I have only worked out since January, but I started in November, then I got sick, so I almost don't like to count the weight I lost in Nov./Dec, since it was from being sick and not working out and watching my diet :(. But I do feel great since I started losing weight. I have less than 100 pounds to lose to get where Ir eally want to be. I'm currently working on the "next 20 pounds", as I tell myself. It's easier to lose 20 than 100 :).

-Kel

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Some general comments on this S.I. / low back pain issue. First, the S.I. and "tail bone" are close, touching in fact!

The OS that treated me after a car accident said the SI joint is actually in the pelvis. It does not touch the spine at all. It is the joint that allows the pelvis to swing and pivot so we can walk and twist. The Sacrum is the joint that actually touches the spine. If you definitely have SI problems, and have problems walking, ask if your Ichy ligament could be swollen. When swollen, it rubs, and even pinches off, the nerve that feeds the outer 2/3 of your legs, causing your foot to turn in and droop, pain, and muscle weakness. Please keep in mind that this is what I learned about my specific case. I have recurrent problems with my Ichy ligament and right SI because of the crash, and have learned also that PT is the only thing that works every time.

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Joint pain, lower back pain, mouth sores, headaches and vertigo. These all appeard in my teens, but was undiagnosed. My mother and sister, and a uncle all have Celiac. While there is a family history, I was never considered as I did not have the bowel difficulties.

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I have a lot of joint pain lower back pain. I had the Dr. run a bone density scan and it showed the beginning of osteporosis. Something worth looking into. I think this disease takes a lot more out of our body's than even we are aware of.

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I was diagnosed with mild osteopenia, but the fact that I've been unable to take a walk for longer than 10 minutes or so since 2002 is proof that something larger is at play here. I'm really upset because PT doesn't seem to affect this at all, and the injections I had were terribly painful and did nothing, either. Also, so far at PT they haven't used heat or e-stim, just stretching excercises. I know I need more than that. In the meantime my back dr. has ordered a bone scan of the si joint. (Not a DEXA scan to show osteoporosis, a bone scan with the radioactive injection.) I'm hoping it brings some answers, out of all my symptoms I'm the most troubled by this one!

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