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

I Wonder About This Pain?


mysterypain

Recommended Posts

mysterypain Rookie

Hi everyone! :D This is my first time posting but I have been doing alot of reading here. I am being tested for celiac and am very confused about the symptoms. :( I am confident that my doctor ordered the test based on information I have given her over the past three years. I have had every test there is I am sure! My heart has been tested and I have had MRI and catscan to test for tumors and MS. I have alot of the symptoms that show up here on your board but one is not mentioned. My question is do any of you get pain between the shoulder blades that goes through you like a knife? I have episodes of this pain that stop me dead in my tracks. I call it white pain.....the kind that takes you over and makes you wish you could just die and get it over. :blink: I have had three children, naturally! When I have this pain I say I would rather be having a fourth child! It feels like a heart attack. My doc has checked into it and says my heart is normal and it is nothing to worry about ,but with this idea of me possibly having celiac I can't help but wonder if it could be connected. I am very confused about this disease and need some help sorting out what is caused by the food I eat and what is not related. I do get very dizzy and lose some of the feeling on my right side when I am not careful with my diet. I get horrible abdominal pain an feel soooo tired I cannot walk very far, I also have been suffering terrible migraines. I am sorry this is so long, I really have come to a point of total desperation.


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



Celiac.com Sponsor (A8-M):



seeking-wholeness Explorer

I'm not sure if your mystery pain is food-related or not. Are you keeping a food diary? If you write down everything you ingest and the timing of your symptoms, you might notice a pattern.

I doubt this is the same sort of pain that you have, but I have had a "mystery pain," too. I started experiencing it before I got pregnant with my first child, and I remember it being especially frequent during my second pregnancy, but I haven't had it in quite a while now. It was a throbbing pain that "blossomed" from the area right below my shoulder blades, just to the left side of my spine. It was intense, and my heart would pound and I would breathe heavily while it lasted (maybe 30 seconds?). I remember worrying that I had an aneurysm! Now I wonder if it might have originated in my stomach, instead. I'll probably never know!

Where exactly are you in the testing process? Do let us know when you have your results! Good luck!

  • 7 months later...
paulstefano Newbie

I just had this happen last week. It's got to be a weird coincidence, though. I was carrying a heavy object over my head at the time. All of a sudden, I had a stabbing pain in my back, right between the shoulder blades. It never went away though. I've had back pain ever since, for about a week. I have to think it's a muscle pull, not related to celiac, but you never know.

j9n Contributor

I get this pain too. When I had my endoscopy they found a hiatal hernia and ulcers on my esophogus from reflux which is causing my pain. I also get some pain when swallowing at times, like the food is getting stuck (which it is).

GEF Explorer

Just wondering... did your doctor check your gallbladder? I've heard that pain in your shoulder area can happen when you have stones, debilitating abdominal pains accompany.

Good luck in finding your answers.. hope you feel better soon!

Gretchen

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. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.