I am after some info to see if anyone else has pain from gluten.
I have issues with my gut. Ultrasound, colonoscopy and endoscopy found nothing significant.
I started with gut issues, joint pain, muscles tightening. It’s been going on 3 years now. Still no answers but my symptoms are now wide spread nerve pain and joints. I can feel it daily when my food starts digesting. I can feel it start digesting because I also developed visceral hypersensitivity. I could feel my food moving through my intestines, every twist and turn. That has calmed down now luckily.
But the nerve pain is awful. Stomach acid also sets off my nerve pain when my stomach rumbles. Drs think I’m just anxious when I am not.
They all seem to think I have an intolerance to gluten but I am not sure what to believe anymore.
Has anyone had any gluten related pains. My nerve pain is from head to toe.
Any info would be appreciated. I am sick of being ignored. I have also requested testing for intolerance. They all tell me it’s by elimination. Sick of taking diff pain medications and being ignored.
I am not celiac, not colitis but I believed I had chrohns and often still think I do but my tests didn’t show it but did show mild inflammation. no one seems worried and said everything was ok. So just wanting to know if gluten can really cause so much muscle and nerve pain.
9 Replies
Have you done an elimination diet to see if that makes a difference? That should be your first step. My mum has a lot of gut/body issues and chrohns disease runs in her family however over the years no tests have been conclusive so all she can do is manage it as best she can. A lot of foods make her sick including gluten and fructose but it took an elimination diet to work out which foods affected her
Yes I have done but not completely because I also have Cronic gastritis so I am litmited there with what I can eat. I also get migraines and sometimes need to just eat quick. I am trying really hard to be 100 % gluten free.trying to get my head around it all working out what I can eat for each condition. Pretty much should just live off water 😂 it’s so frustrating and draining. Thank you
Unfortunately you need to do the elimination diet. Its hard, but that’s the only way to know for sure and find out what you can eat, or even if it’s food related.
Unfortunately not everything has a test. My sons specific condition there is no test for. So we had to rule out everything else it could be, everything from encephalitis, depression and brain tumours, before we got to his current diagnosis. It was gruelling. And you think hooray we’ve got a diagnosis, but hang on, there is no known treatment for it!
Unfortunately not everything has an answer yet, and there will always be rare conditions that throw people for a loop.
I’d consider seeing a dietitian to help you problem solve and prep for an elimination diet and a psychologist who can help you work through the mental side of getting ready and accepting that you are going to have to do this.
Thank you it is such a long tiring process isnt it. All the test and torture each time of awaiting results that end up coming back negative then being looked at like I am making this up. It’s hard to believe an intolerance can cause so much pain. I will see a dietician and see what they suggest and get a diet plan to suit.
Gluten can cause nerve pain (peripheral neuropathy) if you are sensitive. Another possibility which doesn't seem to be fully understood yet is non celiac gluten sensitivity (NCGS) reported in those with MTHR polymorphism. Ditch the gluten for a couple of months and see what happens. In all honesty, if your doctor has ran tests and they're not remarkable and you want answers youre better off seeing a nutritionist, dietitian or even a natropath.
Thank you, this is good to know. I am at that point now, i am researching some places that you have mentioned, that I can go to. The nerve pain is awful.
Are you sure you don’t have rheumatoid arthritis?
Gluten and wheat products cause flare ups for people with this condition.
You need to see a dr and start elimination diets
All my bloods for these things have come back negative. I am waiting for a specialist to see me. They did think RA as I get prosiasis as they are linked but so far nothing they all say gluten intolerance. Hopefully a specialist can give me more answers, I am so over it.
Poster here - I have had colonoscopy and endoscopy. Both came back clear. Also had all arthritis bloods done to check for lups, RA etc all clear. Waiting on specialists appointments. Also trying very hard to be gluten free, still learning what is and isn’t etc.