Constant low back, abdominal and pelvic pain!

[Aussienae]

4 minutes ago, EmilyKate said:

Oh gosh, well I hope you get answers soon! There really needs to be more information on it, but it is reassuring in some ways to know others are experiencing the same things and we’re not going crazy! 

Thats exactly why I joined this forum! I thought I was going crazy....

I think inflammation is alot to do with our issues. Autoimmune diseases cause inflammation.  I just wish I knew how to fix it!

[EmilyKate]

39 minutes ago, Aussienae said:

Thats exactly why I joined this forum! I thought I was going crazy....

I think inflammation is alot to do with our issues. Autoimmune diseases cause inflammation.  I just wish I knew how to fix it!

Yeah I feel a lot better already just talking on here! Yeah I completely agree! Well I’ll keep you posted if I get anymore answers from my GP in terms of next steps. 
 

Coeliac disease really is an evil little body destroyer that needs to be stopped (other than just stopping eating gluten) by some remedy. We’d all be rich if we had the answer!!

keep posted with how you get on with your ct results!

[cristiana]

7 hours ago, EmilyKate said:

Do you take any supplements/vitamins at all? 

My consultant has prescribed Fultium Vitamin D, but I also take Vitamin B and magnesium from time to time.

I also take Boots jelly sweets for Skin and Hair, can't remember the name.

Going back to pelvic pain, I did notice that coming off lactose for a while reduced lower quadrant bloating and that helped reduce the pelvic pain.  I do consume dairy now but it helped when I first was diagnosed, because as you may know when the gut is damaged by coeliac disease this can temporarily  create difficulties with the digestion of lactose, adding to the bloat.  Soya, pure oats and things like lentils also created bloating which again no longer is a problem for me.

 

[cristiana]

7 hours ago, EmilyKate said:

Serum alanine aminotransferase level

This isn't uncommon in coeliacs - see this link, for example:

https://www.cghjournal.org/article/S1542-3565(03)00313-6/fulltext 

In my own case my ALT was normal but I had a really weird reading in that my immunoglobulin levels were 41 instead of 35 max.   This really worried my GP but when I saw my consultant he said, "Oh yes, it's unusual, but we do see this in Coeliacs from time to time". 

My levels are now normal, I am thankful to say.

[EmilyKate]

26 minutes ago, cristiana said:

This isn't uncommon in coeliacs - see this link, for example:

https://www.cghjournal.org/article/S1542-3565(03)00313-6/fulltext 

In my own case my ALT was normal but I had a really weird reading in that my immunoglobulin levels were 41 instead of 35 max.   This really worried my GP but when I saw my consultant he said, "Oh yes, it's unusual, but we do see this in Coeliacs from time to time". 

My levels are now normal, I am thankful to say.

Thanks for sharing that article. Mine spiked after being 6 months gluten free so they thought it would have gone down, perhaps I need to get re-tested to see if it has gone down now after a year.

thanks for the tips about vitamins too!

Got a long list to discuss with my GP when I finally get the appointment! 

[Wheatwacked]

 

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly are vitamin D, Thiamine, Choline, and Iodine.

• 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective
• 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.
• Choline 500 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?
• Iodine – speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.
  • Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."
• Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 
• 500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).
• Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.
• Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

[EmilyKate]

3 hours ago, Wheatwacked said:

 

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly are vitamin D, Thiamine, Choline, and Iodine.

• 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective
• 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.
• Choline 500 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?
• Iodine – speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.
  • Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."
• Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 
• 500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).
• Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.
• Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

Wow- lots to consider here thank you!

[Cookiebgood]

On 4/24/2023 at 2:51 AM, cristiana said:

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

  

 

 

I just saw your post because I was diagnosed over a year ago with celiac. Just to say, you have celiac. Nothing else. No precautions,  just stop eating gluten. My migraines started 20 years ago. No medication worked. I took so many meds that I hardly kept anything down. I threw up constantly. 

Then my pelvis hurt so bad that I could barely walk. I constantly told my doctors and to my surprise they had no answer. I went to a gyn and he said I had osteitis pubis. He also said it was diagnosed over three years prior according to my chart. Then my primary told me to go to physical therapy. It helped a lot but I need to return. I have no idea if it is related to celiac or not. I have not see that symptom on line. 

I just started taking this disease seriously when I started going on line this week. Oh my. I was to out done.  Having migrains that long and of the 20+ doctors I saw, not one was able to not only diagnose me, but help me through this journey.

Best wishes on yours

[EmilyKate]

4 hours ago, Cookiebgood said:

I just saw your post because I was diagnosed over a year ago with celiac. Just to say, you have celiac. Nothing else. No precautions,  just stop eating gluten. My migraines started 20 years ago. No medication worked. I took so many meds that I hardly kept anything down. I threw up constantly. 

Then my pelvis hurt so bad that I could barely walk. I constantly told my doctors and to my surprise they had no answer. I went to a gyn and he said I had osteitis pubis. He also said it was diagnosed over three years prior according to my chart. Then my primary told me to go to physical therapy. It helped a lot but I need to return. I have no idea if it is related to celiac or not. I have not see that symptom on line. 

I just started taking this disease seriously when I started going on line this week. Oh my. I was to out done.  Having migrains that long and of the 20+ doctors I saw, not one was able to not only diagnose me, but help me through this journey.

Best wishes on yours

Sorry to hear you’ve been struggling for so long too! It really is such a mystery illness and there’s just not enough knowledge about it amongst the GP’s. Good luck with your journey too x

[DjinnDjab]

On 5/25/2022 at 2:37 AM, Aussienae said:

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 am a 37 yo male and this describes me perfectly. on a scale of 1-10, i am at 8. 9. 10, 11 for 8-12 hours a day, 6-7 days a week. this has been going on for about 5 years and i just found out i may have celiac. so needless to say i no longer have friends or relationships so i spend a lot of time with myself. and uhhh what really sucks is uhh, sorry to say, "enjoying myself" is a trigger for this pain. i can be fine all day until i take 5 mins to "myself" and then its all downhill from there. this has robbed me of every.single.thing in my once colorful life. 

[trents]

Welcome to he forum community, @DjinnDjab!

You wrote: "i just found out i may have celiac. so needless to say i no longer have friends or relationships." Are you saying that the need to eat gluten free has resulted in losing all your friends and your entire social life?

[Scott Adams]

2 hours ago, DjinnDjab said:

i am a 37 yo male and this describes me perfectly. on a scale of 1-10, i am at 8. 9. 10, 11 for 8-12 hours a day, 6-7 days a week. this has been going on for about 5 years and i just found out i may have celiac. so needless to say i no longer have friends or relationships so i spend a lot of time with myself. and uhhh what really sucks is uhh, sorry to say, "enjoying myself" is a trigger for this pain. i can be fine all day until i take 5 mins to "myself" and then its all downhill from there. this has robbed me of every.single.thing in my once colorful life. 

If you were just diagnosed I can say that if you go 100% gluten-free should should see dramatic improvement of your symptoms over the next few months, but the hard part is to stay gluten-free.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[ButWhatCanIEat]

Good morning,

 

I got an email about replies to this post. Some of my doctors had blamed a slipped disc for the pain I had and that contributes, but after meeting with a gastroenterologist AGAIN and trying some lifestyle modifications, I found out I have IBS and can't tolerate corn or excessive fructose to any degree. Cutting out corn AFTER having cut out all gluten containing products was a real pain but I feel much better now!

[Aussienae]

Mine is definitely triggered by inflammation and stress! I do also have arthritis in my spine, but the pain is more in my pelvic area. Im sure i have other food intolerances or other autoimmune isues but the more I focus on it and see doctor after doctor, it just gets worse. 

Best thing is get of Gluten! (I also avoid lactose). Try to limit stress and anything that causes inflammation in your body.

[cristiana]

I think sometimes the pain described here can be a result of a sort of 'perfect storm' of contributing factors.  Recently I had an appalling bout of lower back pain, lower burning gut pain and what felt like cramps.  I then started to think about what could have caused it and I realised it was several things that had set it off: I'd been carrying heavy luggage (back strain); I had been sitting down in a car for too long and wearing a tight belt (I have pudendal nerve issues and sacroiliac issues and this exacerbates the pain), and I had bloating and burning pain in my colon caused by eating too much soy, latte and caffeine, I guess putting further pressure in the lower abdomen.  I had this same pain prior to my diagnosis and a couple of years post-diagnosis, I'd quite forgotten how unpleasant it was. 

Edited April 24 by cristiana

[Aussienae]

I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back.

This disease is very mysterious (and frustrating) but not always to blame for every pain.