Constant low back, abdominal and pelvic pain!

[Aussienae]

I have spent endless hours researching and reading this forum. Thank you everyone for sharing your stories!

I was diagnosed in mid Feb 22 with positive blood. The hospital said to go gluten free asap as my levels were very high and did not need to be confirmed in biopsy. 

Im 3 months in and some things have cleared up, symptoms that I didnt even realise were related (sore feet and hands in the morning, dry mouth and eyes) but I have ongoing constant dull lower back and abdo pain, its so low its pretty much in my pelvis/groin (similar to menstrual pain) Weirdly its not there in morning when I get up but appears around mid day even if i dont eat. Its the same every day, although somedays it can be more painful to the point I take pain relief. I also have the feeling my bowel is full but I dont have C or D and am regular 

I take probiotics, digestive enzymes, B complex and magnesium. Ive had CT with contrast (last December) and more recently a pelvic ultrasound. Last blood test my Ferritin was slightly low and my CRP is always high. But all other tests normal, except for celiac of course.

Any suggestions???

[Aussienae]

Not one person here has had similar pain? 🙄 

[cristiana]

Hi Aussienae

I am so sorry - I missed your post completely.🤗

In a nutshell, us females should always get lower pelvic pain checked out in case it is a gynae issue, at the very least requesting a CA125 test from your GP.  But if you have already had that checked, it does sound to me as if it could be some kind of bloating that builds up during the day.   To ascertain what could be causing the bloating, I'd keep a food diary for a while.  See if there are any patterns developing.  When first diagnosed with coeliac disease we often have temporary dairy intolerance, which often rights itself after the villi are healed.  So perhaps to see if dairy is your issue:  according to my gastroenterologist, to test this give dairy a complete break for 3 weeks.

Other bloating culprits while I was healing were soya, beans, pulses and oats.  Re: oats, this included pure oats ( i.e. those certified gluten free - standard oats are naturally gluten free but can pick up gluten when being processed alongside other grains).   In the UK we are told to give oats a miss for six months to a year after diagnosis, and then gradually introduce pure oats to see if we react.  If you still have a problem at that point, it could be that oat protein is an issue: a sizeable minority of coeliacs react to avenin, which is the protein in oats, and it causes similar symptoms to the ingestion of gluten.   I have had to avoid oats for almost eight years but suddenly, now my TTG numbers are normal - no idea why it took so long -  I can tolerate small amounts.

That said, it could also be SI pain because if it is musculoskeletal/joint related resting at night often helps.  I remember reading an article once that suggested SI pain is common in coeliacs and is a pointer to the condition.  I've attached an interesting article about this condition at the end of this ramble.

My own SI pain was so severe that it spread to my groin and down my thighs to the point I felt that something really terrible must be going on.  I remember going on a couple of walks and crying with the pain and fear of what it might be (fortunately I live in the countryside, so only the odd deer or rabbit would have seen!)

Re: dealing with the pain.  I found it very helpful not to sit down too long when I had this going on, avoiding tight waistbands, not going on too long walks, and when driving distances I was told to stick a good sized book on the drivers seat (don't ask my why, but a sports coach friend suggested it and it works!).  I've had a touch of pudendal neuralgia too.  You might wish to google that.   It might be worth going to see a physio or chiropractor as they will be able to tell you pretty quickly if you have SI pain/PN.  Warm baths lasting 20 minutes with a decent handful of Epsom salts were very helpful.

But whatever you do, do keep away from the gluten, at all costs, because it will make any bloating and inflammation worse  As an aside, and this is just my personal theory, totally unscientific, I feel that any bloating down there will put pressure on all those in joints in that area.

Do come back with any questions.  I'm snowed under here at the moment so try a PM if it all goes quiet, and I'll reply on the public forum.  Sorry for missing your post first time!

Cristiana

 

https://pubmed.ncbi.nlm.nih.gov/19504097/#:~:text=Using various imaging techniques%2C involvement,or calcification of the ligament.

 

 

Edited May 28, 2022 by cristiana

[Aussienae]

Thanks for your reply christina. 

I have had a pelvic CT with constrast and a ultrasound showing nothing, as well as a chest xray (for something else) I have had 4 ER visits since december and got my diagnoses in feb this year. 

Although I have obviously tried my hardest, Im sure there has been some CC incidents. Ive gone as far as charging all my facal moisturiser etc. Im having my levels checked in 2 weeks so that should tell me if Im getting somewhere

Funnily enough, yesterday the pain was bearly there, but then its back today. I was off lactose for the last few weeks, but decided to try totally off dairy 3 days ago. 

Its frustrating when your diet is so restricted yet you arent getting better. Especially after 3 months. 

I will try a chiro soon and see how that goes, but maybe I just need more time? My doctor feels I have gone undiagnosed for many many years.....

[cristiana]

Aussienae, I agree with you.  You do need more time.   I seem to recall someone else on this forum advising me the same many years ago.  We can't expect instant results if we've been undiagnosed for many years.

I am not sure how old you are but I was diagnosed, by some strange coincidence, at the same time as two of my friends.  One is about 15 years younger than me, the other 5.  They both seemed to get better much quicker than me.   Was it an age thing?  Was it because their coeliac disease had been active for a shorter period than mine?   One of them shared me that a year after diagnosis their TTG levels were back to normal again, yet  It took mine many years to fall, and yet I consider that I was much more strict with my diet than theirs.   For whatever reason, we all heal at different rates.  

If you do have sacroiliac involvement, you will find that that joint can get tight for all sorts of reasons.  Even now mine still can play up if I drive too long in a bad position, if I wear a tight waistband, if I stand up too long ironing, sometimes if I walk too far. 

With your food diary, I would suggest you keep a note of any significant periods of exercise/sitting down/standing you do every day and see if it brings any pain with it.  Whilst I believe it is really important to remain active, I think when mine was very bad the very long walks I was doing at that time weren't helping the joint.   So listen to your body.  

A chiropractor I saw pushed the area around a sacroiliac joint and I nearly went through the roof, so they should be able to identify the source of the pain quite quickly, and yet it definitely referred to pelvis and lower abdomen.  TBH, I never really found her intervention helpful but I stuck with it. Then, one day, I misjudged a step while I was out shopping and the pain went right through me like bolt of lightning.  I went home and lay on the bed for a while, fell asleep, and then when I woke up the pain had gone and stayed away for some time!   

Anyway, keep us posted.

 

 

[Aussienae]

Thanks Christina. I really appreciate your input

Im 41, but like I said, we do believe theres a good chance i was undiagnosed for at least 15 years. 

This pain is everyday, some days worse than others and is what sent me to the ER originally. They thought it was a kidney infection and gave me multiple IV antibiotics only to find out it wasnt. I do think the antibiotics have made me worse and Im still working to get my system back in order!

I do think Im in for the long haul with healing. I will be interested to see what my levels are in a few weeks

[cristiana]

I am not sure where you live, but do some research and see what local products are available to help you put some more good bacteria into your gut through probiotics, either through food or supplementation.    I was put on gluten-free probiotic tablets by my nutritionist and when I could tolerate dairy again, she told me to try live Greek yoghurt.   

Edited May 29, 2022 by cristiana

[Aussienae]

On 5/30/2022 at 1:59 AM, cristiana said:

I am not sure where you live, but do some research and see what local products are available to help you put some more good bacteria into your gut through probiotics, either through food or supplementation.    I was put on gluten-free probiotic tablets by my nutritionist and when I could tolerate dairy again, she told me to try live Greek yoghurt.   

Hi Crisitiana 

Just an update, I saw my GI today for review and my Celiac bloods have all returned to normal levels! I have only been gluten free for just under 4 months so I was very happy with the results!

I am still having issues with the pelvic pain though. Is it normal to still have pain after my bloods are back in normal range? I have had 2 days pain free in the last 2 weeks so Im hoping that its the start of my recovery!

[cristiana]

Hi Aussienae

Congratulations!  

It is possible that you just need more time for things to settle.

If you haven't already, start keeping that food diary, and include supplements, probiotics - everything you eat and drink - and record activity too.  You may see a pattern emerging.    Try and vary your days a bit to see if anything helps or makes things worse.

Did you mention the pelvic pain to your GI?

C.  

 

 

[Aussienae]

7 hours ago, cristiana said:

Hi Aussienae

Congratulations!  

It is possible that you just need more time for things to settle.

If you haven't already, start keeping that food diary, and include supplements, probiotics - everything you eat and drink - and record activity too.  You may see a pattern emerging.    Try and vary your days a bit to see if anything helps or makes things worse.

Did you mention the pelvic pain to your GI?

C.  

 

 

Thanks Christina

I have mentioned it to him repeatedly, but he doesnt seem very interested honestly. He just said come see me again in 3 months....I honestly hate doctors....

[cristiana]

Hi Aussinae

I remember there were lots of unresolved issues for me at diagnosis - a recurring liver function test result which always worried my GP; tingling, buzzing and twitching; thinning hair; dizziness; bloating... there always seemed to be something going on.   A fellow coeliac on this forum @icelandgirl was in the same boat, we joked we ought to change our IDs/names to "Always Something"! 

Anyway, time did make most of these issues improve, but we're talking many months, sometimes a bit longer.  And in my case, weird stuff still comes back from time to time.  I thought I'd be joining this board for a little while for a bit of advice and reassurance,  and I am still here asking questions.

Now, don't be disheartened by this -  I say this to reassure you.  I was wondering at first if I had very serious neurological stuff going on, and even my doctor kept thinking there was some sort of blood cancer at first because of my dodgy blood tests.  But I'm still here, and occasionally get buzzing and tingling, and dodgy blood test results, but all of this whilst annoying hasn't come to anything.  I believe that really a lot of my issues have been to do with having undiagnosed coeliac disease for the first 45 years of my life, and the associated nutritional deficiencies and inflammation, and glutening incidents.

Some people bounce back, I know quite a few coeliacs in this situation.  You may well be one of them in a few weeks!  I remember going on holiday to Liguria, Italy once and our waitress shared she was a coeliac.  She looked healthy, had glowing skin, shiny hair, was athletically slim, was holding down a very busy, probably stressful job, and I looked at her and thought "Impossible!"  But there are lots of coeliacs who enjoy fantastic health once they get their diets straight.   I'd say of all the coeliacs I know here in the UK I've had the choppiest ride, most are doing really well now.

 So you may wish to give it a bit more time.  I think in your shoes, and having had all the very comprehensive tests you have had, I'd be fairly reassured. But if you wish to be proactive, you could approach a physio or chiro to see if the sacroiliac joint (or some other) is an issue.  You could go and have another chat with your gynaecologist to see if there is any other minor issue that might be causing your pain.  I did all of this, and kept thinking they had missed something, but eventually things did get better.

Try in the meantime to relax, take nice warm baths with Epsom salts, read a good book, do gentle exercise.  Enjoy the sun.  Try to get involved in interesting projects that will take your mind off things if you can because, if you are anything like me, I find focusing on symptoms sometimes makes the pain worse. 

And come back here any time if you need to chat. 

I am going to be absent from the forum a little over the summer, so please don't think I'm ignoring you if you don't hear back immediately. There are loads of lovely people here you can turn to if it all goes quiet!

Take care

C.

 

Edited June 11, 2022 by cristiana

[marthawkb]

Hi . I’m 45 and got diagnosed 5 years ago. I defiantly had celiacs longer but it never got picked up.

im so fed up I could cry, I’m having bad pelvic pain, pain in lower back and buttocks. It also radiates down my legs.

when I awake up on a morning it’s ok but as the day goes on it gets worse, I feel pressure to. I’m hardly sleeping as I feel sitting and laying down doesn’t help.

Getting a bath is the only thing that helps me, this has gone on for weeks now. Sorry to rattle on but I’m so fed up.

xx

[trents]

Welcome to the forum, Marthawkb!

Sounds like nerve impingement in the lower spine. As you probably know, one of the common medical problems associated with celiac disease is bone density loss due to poor calcium absorption. I would suggest you get some imaging and testing done for degenerative disk disease.

[Aussienae]

20 minutes ago, marthawkb said:

Hi . I’m 45 and got diagnosed 5 years ago. I defiantly had celiacs longer but it never got picked up.

im so fed up I could cry, I’m having bad pelvic pain, pain in lower back and buttocks. It also radiates down my legs.

when I awake up on a morning it’s ok but as the day goes on it gets worse, I feel pressure to. I’m hardly sleeping as I feel sitting and laying down doesn’t help.

Getting a bath is the only thing that helps me, this has gone on for weeks now. Sorry to rattle on but I’m so fed up.

xx

Im sorry to hear you are going through this! My pain has decreased and I can function normally now. Some days are better than others. I can understand how fed up you are! I had a bad patch a few months ago where the pain moved to my right hip! It was horrible. Randomly I had bloods done and my inflammation markers were through the roof. Ive since had an iron infusion, been taking D3, Magnesium and Vit B and Im feeling a lot better plus my inflammation markers have come down too.

Have you had a recent blood test? To check for inflammation and maybe your celiac antibodies to make sure you arent getting gluten somewhere?

 

[marthawkb]

Hi ,

Thank you so much for your reply !

im booked in for bloods 10th jan , it’s the abdomen pain that’s getting me down it’s there everyday. I feel it when I’m walking and up and down stairs , when o lay down it’s just not going away this has been constant for the passed month.

i woke up Christmas morning and I thought it had gone but by lunch time it was back. I hate mentioning it to my family I feel I like I’m constantly going on about it 🙈

[Scott Adams]

Since you have an upcoming blood test, have you been eating gluten, at least 2 slices of bread's worth, daily for the past few weeks? For the tests to be accurate you must do this for 6-8 weeks before the blood test, and for at least 2 weeks before an endoscopy.

[Wheatwacked]

Are you having any digestive issues?  One of the most performed operatons in the US is for gall bladder.  If you are not getting enough choline in your diet it can cause dysfunction in your fat metabolism

Even though western medicine says no Gall bladder pain can cause back, hip and sciatic nerve pain. Gallbladder meridian often play a role in the energetic cause of headaches, jaw tension, shoulder pain, sciatic pain, hip pain, knee pain, ankle pain, and foot pain.

Less than 10% in the UK get enough choline.  

Could we be overlooking a potential choline crisis in the United Kingdom?

 

 

[Aussienae]

7 hours ago, marthawkb said:

Hi ,

Thank you so much for your reply !

im booked in for bloods 10th jan , it’s the abdomen pain that’s getting me down it’s there everyday. I feel it when I’m walking and up and down stairs , when o lay down it’s just not going away this has been constant for the passed month.

i woke up Christmas morning and I thought it had gone but by lunch time it was back. I hate mentioning it to my family I feel I like I’m constantly going on about it 🙈

I had exactly the same thing. It lasted for about 7 months. I think its all to do with inflammation, but thats just a guess. I had every test under the sun and the only thing that came up was celiac. I think we will just go through ups and downs, its just a matter of figuring out what makes things worse for us. 

I have heard some people get this pain from dairy? Ive gone lactose free so not sure if that might be worth a try?

Keep your head up, its hard some times but being positive definitely helps! 

[cristiana]

On 12/30/2022 at 4:48 AM, marthawkb said:

Hi . I’m 45 and got diagnosed 5 years ago. I defiantly had celiacs longer but it never got picked up.

im so fed up I could cry, I’m having bad pelvic pain, pain in lower back and buttocks. It also radiates down my legs.

when I awake up on a morning it’s ok but as the day goes on it gets worse, I feel pressure to. I’m hardly sleeping as I feel sitting and laying down doesn’t help.

Getting a bath is the only thing that helps me, this has gone on for weeks now. Sorry to rattle on but I’m so fed up.

xx

Hi @marthawkb

So sorry I didn't see this early - Christmas has been busy. 

But I just wanted to say I could have written this.   In my case I believe I had an issue with my sacroiliac joints.

I had pain in the groin, lower back and burning in the buttocks.  It rumbled on and on for some time after my initial diagnosis, for many months, I think at least a year, possibly two even.  At times I felt like crying because it was so intense, and I imagined it must be something very serious indeed. 

Throughout this time I used to go on walks in the country to try to keep fit and remember crying when I thought no-one was looking because the pain was so bad.  The problem was, exercise at times seemed to make it worse, rather than better and  bloating also exacerabated it, which might explain why, like you, I found it wasn't bad on waking, but it got worse during the day.  I found it almost impossible to wear anything tight around my waist at that time.

I didn't know where to go for help. My GI gave me a sigmoidoscopy but apart from a couple of benign polyps all was normal there.   I asked my GP for CA125 and pelvic ultrasounds but those came back normal.  I was glad though as at least I could exclude problems there. 

Around that time I visited a chiropractor in desperation.  She applied pressure on the SI joint and wow it hurt.  She showed me on a chart where the pain refers to with SI pain et voila, that was it.   

It took a while to address.   My chiropractor tried to do some targetted therapy but in actual fact, one day, misjudging a high step, I jarred my pelvis and that seemed to reset things to some degree, and I stopped seeing her after that, although I still have the pain from time to time.

If you think this is what you might have, it would be good to confirm it with a medical professional.  However, staying strictly gluten free is a must, and you may find it helpful cutting out/reducing foods that cause bloating.

I try to listen to  my body and although I still enjoy walking I find doing too much walking particularly in the wrong shoes (with thin soles) makes things worse, so I rest a bit more when I feel that tightness return.  Baths definitely help - I recommend warm baths with a good handful of Epsom salts for about 20 minutes - v. relaxing, but be careful as you get out of the tub as it can make you feel a bit woozy.  Avoid wearing anything tight around the waist.  Be careful to not lift heavy loads, and only carry a small purse/handbag.   If you have to lift anything, keep the load close to your body, and try to keep weights even.

I hope this helps.   

Lastly, here's some research SI issues in coeliacs.

https://pubmed.ncbi.nlm.nih.gov/19504097/

Cristiana

 

[marthawkb]

Hi Christiana,

Wow - this sounds so like me.

todays a bad day I’m feeling pain in left side just from waking. Honestly I could cry, I’ve just ordered some Epsom salts so thank you.

I think my small intestine is damaged to hell tbh I’ve had celiacs for at lease 15 years but only got diagnosed 4 years ago.

I am a worrier and I’m thinking all sorts of bad things I just can’t help it.reading on your issues do sound like mine and thank you for taking the time to message me. X

[cristiana]

Martha... I am a worrier too and having experienced the awful pain that SI issues cause,  I completely understand why you must be imagining all sorts of things.  I certainly did!  Our symptoms sound identical.   I'd be surprised if the pain is caused by anything else but please do mention these issues to your doctor in case s/he wants to run any further tests such as a CA125 blood test and/or pelvic ultrasounds. It would be good for you to have some peace about this - it is horrible trying to deal with chronic pain and not knowing the cause. xx

 

Edited December 31, 2022 by cristiana

[marthawkb]

28 minutes ago, cristiana said:

Martha... I am a worrier too and having experienced the awful pain that SI issues cause,  I completely understand why you must be imagining all sorts of things.  I certainly did!  Our symptoms sound identical.   I'd be surprised if the pain is caused by anything else but please do mention these issues to your doctor in case s/he wants to run any further tests such as a CA125 blood test and/or pelvic ultrasounds. It would be good for you to have some peace about this - it is horrible trying to deal with chronic pain and not knowing the cause. xx

 

 

I’m having a ultrasound next week. I had one is august and it was all fine as I was thinking is this gynea issue ? 
my ovaries were fine and no fibroids.

so yes I’m thinking bowels 🙈god knows what’s going on x

[cristiana]

That's really reassuring about your forthcoming ultrasounds, and your last one too.   

But it could be that bloating is a big contributing factor here, so I'd say keep a food diary and see if there are any patterns.  For me the worst pain was when I'd been eating too much dairy (live yogurt) and wearing tight waisted skirts and jeans. I was writing a book at the time and spent long hours at the computer.  Really painful that was.  I felt the pain in my groin and in lower back on the left side, and the burning went down my left buttock to the leg.

 

Edited December 31, 2022 by cristiana

[Aussienae]

On 1/1/2023 at 1:24 AM, marthawkb said:

 

I’m having a ultrasound next week. I had one is august and it was all fine as I was thinking is this gynea issue ? 
my ovaries were fine and no fibroids.

so yes I’m thinking bowels 🙈god knows what’s going on x

I was just wondering if you ever got an answer? My pain has randomly come back and I cant figure out why!......

[cristiana]

Hi Aussienae

I'm so glad I saw this as I'm not on the forum much at the moment due to work and family commitments.  I am in a bit of a rush so forgive me for not reading all this post if I am repeating anything but when I had pain return I noticed that I was overdoing the dairy somewhat and cut back and that helped.  Also worth checking if gluten is sneaking in, or if you have introduced a food-type that is perhaps causing the bloating.

In the past I have also had some othere tests when the pain has got bad - pelvic ultrasounds, a CA125 test on occasion, and colonoscopies just to be on the safe side.  

If the pain persists I'd say it's worth speaking to your GP to make sure you don't need any other tests.

I ought also to say that I have pain like that again more recently but I do think on this occasion it is to do with the fact that I have been doing a lot of lifting and I've injured my lower back, it seems to be coming from my hip and lower back rather than from the front so it is slightly different. 

I have said to various doctors in the past that as a women it is difficult to know where the pain is coming from and they've always agreed it's best to check for gynaecological issues for peace of mind. 

Hope this helps.

Cristiana

  

 

 

Edited April 24, 2023 by cristiana