Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Any Celiacs Who Have Chronic Tailbone Pain?

fraggle

By fraggle
in Related Issues & Disorders

Recommended Posts

fraggle Newbie
fraggle
Posted

Just wondering if any celiacs here have tailbone and sacroilliac problems?

I have had these for 7 years and since that time have had problems with gluten.

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

yep, but it looks to be structural, based on the MRI, so I don't think - in my case - it's necessarily connected.

GFdoc Apprentice
GFdoc
Posted

I had chronic problems with sacroileitis (~20 years on and off) that has virtually disappeared with the gluten-free diet (I use this as proof for me that the diet is worth it!- what a huge improvement in my life to not have back pain) :D

Sara

armymom3 Newbie
armymom3
Posted

I have had "tail bone" issues for around 1 to 2 years now. My sacrum is off center and have problems lying on my back. In fact, sleeping is very painful anyway. I was diagnosed with mild diffuse osteoporosis which I believe was due to malabsorption of calcium due to Celiac. Chiropractic care has helped somewhat and I have not been gluten-free for too long so I can't see any improvement in that arena yet.

I'm hoping for something to change soon, though.

Leslie

tarnalberry Community Regular
tarnalberry
Posted

armymom - have you been to PT? my problem is very similar, with my sacrum tending to stick on the right and causing a lot of pain on the left, but the PT I saw (and I know that not that many PT's can properly treat sacrum and tailbone issues) was able to help get in unstuck and give me appropriate exercises to allow the muscles to be strengthened and keep the sacrum in place better.

plantime Contributor
plantime
Posted

I have pain in my right sacroiliac, but it was caused by a car accident in '96. I'm afraid being gluten-free does not have any effect on injuries!

GinEva Newbie
GinEva
Posted

Hi:

I, too, have had sacroilliac pain, on and off, for past year. Also getting shoulder pain (2 yrs) and knees are popping and grinding (1 yr). Could my heal pain also be due to not enough calcaum? Not only was I a Celiac baby but also born with an incomplete stomach lining. Couldn't have whole milk till I was 6 yrs old. Mom said she had to raise me on steak and banannas.

My painful knees drove me to search for a reason and I found the link to being a Celiac. Mom said it was only a childhood condition. But, with the help and information from this site, I've gone back to my "baby diet" and have left all forms of wheat behind.

It's been 2 months and much has improved, but I find I can't do too much work that will stress my bones and muscles. So don't try to push a grocery cart and then go home and mow the lawn. My sacroilliac is killing me today!

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

Celiac.com Sponsor (A8-M):


Guest gillian502
Guest gillian502
Posted

I have had debilitating SI Joint and now tailbone area pain and tightness for 2 years. I've never been given an adequate explanation as to why. I've tried chiropractic care and 3 months of PT plus ultrasound therapy applied directly to the SI Joint on both sides, as well as being injected with prednisone into the Si Joint, and nothing has improved. I've been gluten-free for 10 months now, also with no improvement to the back issues. My drs. have suggested it may be related to the celiac disease or my Colitis, but I have no clue. It's the most disabling part of my sickness by far. If anyone has any other ideas for treatment other than what I've mentioned, I'd love to hear it! I've seen an Orthopedist, and at this point I'm wondering if it'd help to go to a different type of specialist for this problem but wouldn't know where to start!

  • 4 years later...
dekefish Newbie
dekefish
Posted

YES!!

and after about 2-3 weeks of zero gluten, my sacrum finally relaxes and the pain starts to subside. It feels like it's created a lot of major postural problems as well as weak back muscles. Stay away from sugar too!

Blessings Explorer
Blessings
Posted

I have been fighting aches and pains for the last 15 years. At one time they thought it was fibromyalgia but not enough trigger points. In 1997, 2000, 2003, 2005, and then in 2007 I would go in for xrays test scopes nothing was ever found. Finally this March I was diagnosed with Celiac, April with Crohns and May with Spondylitis from the Crohns. Spondylitis is a form of artheritis that fuses the SI joint together. I think this may be part of my numbness. We'll see. It is very painful. You know how you feel after working in the yard all day. That's how I wake up in the am. I have started the Humira shot and am still waiting for it to kick in. A few nights ago I went to bed in so much pain, then at 5 am I had to wake up my hubby just to tell him "I have no pain!" It was a wonderful miracle and lasted for a little while. It comes and goes but usually is worse when I am still for a while. They found it through xray and then mri. I pray motrin can take your pain away.

God bless,

Vicky

purple Community Regular
purple
Posted

My dd has had tailbone pain for over 7 years and only this year we found she was gluten intolerant. She fell when sledding so we always thought that's what caused it. She has had minor symptoms for years...could be gluten is causing it. Thanks for posting.

mftnchn Explorer
mftnchn
Posted
I have had debilitating SI Joint and now tailbone area pain and tightness for 2 years. I've never been given an adequate explanation as to why. I've tried chiropractic care and 3 months of PT plus ultrasound therapy applied directly to the SI Joint on both sides, as well as being injected with prednisone into the Si Joint, and nothing has improved. I've been gluten-free for 10 months now, also with no improvement to the back issues. My drs. have suggested it may be related to the celiac disease or my Colitis, but I have no clue. It's the most disabling part of my sickness by far. If anyone has any other ideas for treatment other than what I've mentioned, I'd love to hear it! I've seen an Orthopedist, and at this point I'm wondering if it'd help to go to a different type of specialist for this problem but wouldn't know where to start!

You might check out the lyme disease thread on this forum. I have pain too but it really seems related to lyme disease, even though the fatigue and brain fog seems to be both celiac and lyme related.

mftnchn Explorer
mftnchn
Posted
I have been fighting aches and pains for the last 15 years. At one time they thought it was fibromyalgia but not enough trigger points. In 1997, 2000, 2003, 2005, and then in 2007 I would go in for xrays test scopes nothing was ever found. Finally this March I was diagnosed with Celiac, April with Crohns and May with Spondylitis from the Crohns. Spondylitis is a form of artheritis that fuses the SI joint together. I think this may be part of my numbness. We'll see. It is very painful. You know how you feel after working in the yard all day. That's how I wake up in the am. I have started the Humira shot and am still waiting for it to kick in. A few nights ago I went to bed in so much pain, then at 5 am I had to wake up my hubby just to tell him "I have no pain!" It was a wonderful miracle and lasted for a little while. It comes and goes but usually is worse when I am still for a while. They found it through xray and then mri. I pray motrin can take your pain away.

God bless,

Vicky

Sure sounds like you need to rule out lyme disease....

frec Contributor
frec
Posted

I've had SI joint pain for 6 years. It started with a herniated disk that wouldn't heal. The disk and the celiac were diagnosed the same week. In my case I think all those years of malabsorption--I have other allergies, and it took a while to figure them out--slowed down my healing. This year my back is hugely better because of a series of prolotherapy and PRP (platelet rich plasma) shots to strengthen the tendons, ligaments and cartilage in the SI joints. There are lots of sites on the Internet about both. I can sit for the first time in six years!

Candy Contributor
Candy
Posted

Yeah,my backside hurts regularly,but I'm not sure what to do about it.I thought it has something to do with malabsorption of Calcium,or vitamin B. If I take more Co-enzyme Vitamin B Complex,it seems to subside a little,but I heard/felt my hip grinding too,and I thought ,"Oh no, I hope my hip doesn't break Off-I have enough problems".

1grnthmb Newbie
1grnthmb
Posted

I also have sacroilitis and Spondylitis the latter I was told was connected to the celiac disease ( the doctor said that is why I developed it when it is not something in my family history) which both cause tail bone pain that seems to come and go as the inflammation comes and goes. Mine has not been reduced by being on the gluten free diet. I think because the damage was done before I was diagnosed with Celiac Disease. I was diagnosed with the sacroilitis in 1994 before I was diagnosed with the Celiac Disease. I was not diagnosed with the Spondylitis untill 1999 but was told I had suffered from it for at least twenty years before being diagnosed.

GermanMia Newbie
GermanMia
Posted

I was very surprised to read this... Yes, I also have chronic pain in the tailbone. Sometimes not very much, but sometimes so violent a pain that I can barely sit. It didn't get better after eating gluten-free, but on the other hand my gastro-intestinal problems didn't get better either. Now that I think about it, I think that there is a relation between the violence of the intestinal problems and that pain. A friend of mine is a doctor of osteopathic medicine and he treated the tailbone pain several times; it brought some release, but no healing.

Amber M Explorer
Amber M
Posted
My dd has had tailbone pain for over 7 years and only this year we found she was gluten intolerant. She fell when sledding so we always thought that's what caused it. She has had minor symptoms for years...could be gluten is causing it. Thanks for posting.

I can't believe it. I have had tail bone problems all lower back problems (fused last 2 vert. naturally). They never knew why. Said it might have been conj. I get up every day with a horrible back ache. Had a Bone Density yesterday and the Tech. said there is a problem in the lower area and suggested Thyroid panel and Back Exray. Haven't gotten the full results yet.(on the bone density) Every area I read on this site seems to sound like my life story! Wow. Thanks All.

  • 5 months later...
dekefish Newbie
dekefish
Posted

wow i can't believe i found other people with these issues. i am a year into being gluten free and it feels like my stomach has finally relaxed and gotten small enough that my tailbone and sacrum have finally opened up. i was having to take massive medications and be super inactive and I am just praying that I can re-strengthen and hold my joints together as go through my day! this has been a profound change, and finding my own cranial-sacral adjustments has helped infinitely more than a 'professional' could have. the sacral bone controls so much of your nervous system's input, my vision and mental energy have changed a ton, i'm getting feeling back in my back, and i'm finally able to breathe into my muscles to relax them. truly amazing.

  • 5 months later...
knowurgluten Rookie
knowurgluten
Posted

I have tailbone pain too. I know this is an older thread, but I just wanted to see if anyone else had it that could help.

I was doing situps on a hard floor a couple of months ago. I had lost weight and my butt sagged so much I can feel my tailbone sticking out. It hurts to sit and throbs at times even at rest or standing.

Anyone else get relief from gluten-free diet?

jkr Apprentice
jkr
Posted

I started having tail bone problems about 3 years ago - I only have known about my celiac for about 1 year, but looking back I think I've had celiac since I was five. I had a back x-ray and it showed arthritis in my tail bone. Is that the same as spondylitis? Anyway the tail bone pain started after I had horrible constipation. I have read the pressure from straining can cause tail bone pain.

The pain lasted about a year. Anti-inflammatory meds helped so I don't know if the celiac had anything to do with it.

It was so painful to get up from a sitting position.

knowurgluten Rookie
knowurgluten
Posted
I started having tail bone problems about 3 years ago - I only have known about my celiac for about 1 year, but looking back I think I've had celiac since I was five. I had a back x-ray and it showed arthritis in my tail bone. Is that the same as spondylitis? Anyway the tail bone pain started after I had horrible constipation. I have read the pressure from straining can cause tail bone pain.

The pain lasted about a year. Anti-inflammatory meds helped so I don't know if the celiac had anything to do with it.

It was so painful to get up from a sitting position.

Have you tried more magnesium and less calcium to see if that helps? Just curious.

jkr Apprentice
jkr
Posted
Have you tried more magnesium and less calcium to see if that helps? Just curious.

No I haven't but I have been thinking about taking magnesium after reading lots of posts. I only take a multi-vitamin that has magnesium (200 mg) but I think I need to take more magnesium. What brand do you recommend?

Thanks

noglut4me Newbie
noglut4me
Posted
No I haven't but I have been thinking about taking magnesium after reading lots of posts. I only take a multi-vitamin that has magnesium (200 mg) but I think I need to take more magnesium. What brand do you recommend?

Thanks

I am taking the "Now" brand Magnesium citrate powder

Archived

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

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


  • Member Statistics

    • Total Members
      127,836
    • Most Online (within 30 mins)
      7,748
    RyanOB
    Newest Member
    RyanOB
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Nandos improper preparion celiac childrens food

      By Scott Adams · Posted

      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...