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

Any Celiacs Who Have Chronic Tailbone Pain?


fraggle

Recommended Posts

fraggle Newbie

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

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

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

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

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

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

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

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

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

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

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
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
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

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

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

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

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
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

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

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

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
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
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
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.

  • 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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,545
    • Most Online (within 30 mins)
      7,748

    PatientOne
    Newest Member
    PatientOne
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.