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

Chest & Neck Pain After Going Gluten/soy Free


glutenfree545

Recommended Posts

glutenfree545 Newbie

I was diagnosed with Celiac disease in March. I went gluten free for a month before I realized that soy was also causing a problem. After cutting out the soy as well and a few slip ups I started to feel better by May. My exhaustion and burning headaches went away and my heartburn decreased. By June my heartburn had gotten worse again. I had an endoscopy mid-June and according to the GI specialist everything looked fine and my intestinal lining seemed as healed as it would get. Nonetheless my heartburn which consists of neck stiffness and chest pain that makes it difficult to breath has gotten worse. No over the counter heartburn medications work nor does Nexium or Sucralfate. The pain is position dependent. Sitting up, standing up, and sleeping straight seem to reduce the pain. Even more bizarre is that drinking alcohol will completely get rid of the pain for 1-2 days afterwards. The more I drink the longer the effect. Has anyone else had similar problems? Neither my GI specialist nor my primary have any ideas and I don't think drinking is the best long term solution. I am extremely frustrated with the situation.


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



Celiac.com Sponsor (A8-M):



Bummed-out-Baker Newbie

I was diagnosed with Celiac disease in March. I went gluten free for a month before I realized that soy was also causing a problem. After cutting out the soy as well and a few slip ups I started to feel better by May. My exhaustion and burning headaches went away and my heartburn decreased. By June my heartburn had gotten worse again. I had an endoscopy mid-June and according to the GI specialist everything looked fine and my intestinal lining seemed as healed as it would get. Nonetheless my heartburn which consists of neck stiffness and chest pain that makes it difficult to breath has gotten worse. No over the counter heartburn medications work nor does Nexium or Sucralfate. The pain is position dependent. Sitting up, standing up, and sleeping straight seem to reduce the pain. Even more bizarre is that drinking alcohol will completely get rid of the pain for 1-2 days afterwards. The more I drink the longer the effect. Has anyone else had similar problems? Neither my GI specialist nor my primary have any ideas and I don't think drinking is the best long term solution. I am extremely frustrated with the situation.

BJ:

This sounds serious, and also sounds non-celiac related. You could have a viral infection, or a condition where the protective sac around your heart has excess, non-drained fluid in it, causing pressure. I had similar symptoms when I was in the Army, and no one would believe me. I landed in the hospital with "pericarditis." My paricardium around my heart was full of fluid that had never drained from me getting a terrible upper respiratory infection while in basic training. It's a super serious condition, so go and figure out what's wrong with you. The alcohol may make you feel better because alcohol is a diuretic (gets rid of excess bodily fluids) and a pain killer.

Right now I'm suffering from a zillion health issues, and am waiting for my celiac blood test results. It will explain so many things--including a compromised immune system that renders me vulnerable to odd illnesses--including pericarditis a decade ago. Go and get to the bottom of this. I hope that it's just indigestion.

micfunky Newbie

The worst and longest I've had heart burn was when I had gallstones. The bile from your galbladder neutralizes stomach acid, so if your gallbladder is blocked or not working right it will cause super bad heartburn. Put your finger down on your belly button and move it about three inches to your right and up about an inch and push, if it hurts a lot its prob your gallbladder! Hope you feel better!

glutenfree545 Newbie

Recently the symptoms have started to improve, but aren't gone. The improvement came about when I found a multivitamin I can take daily or maybe I was being glutened without recognizing it and I've inadvertently stopped eating that food. I have an appointment with my doctor next week. I can ask him about the possibility of pericarditis or gall stones. Thanks for the advice!

AVR1962 Collaborator

My gluten intolerance was very neglected unknowingly which caused me ALOT of issues.....terrible burhing in the stomach was one issue. I was taking two Nexium and day and it ws not enough.I was doing 2 does of Pepto in between. I have been on Nexium now for 5 months....when I try to go off the burning in my stomach comes back. I too have found relief from alcohol but I wonder if that is because it numbs things? I also was having a terrible stiff neck which nothing seemed to help.....I tried all kinds of different exercises.I was having chest pains and heart palpitations, was not sure what was related to what. Kept tightening my gluten-free diet to the point of only eatinglabeled "gluten-free" oats and the like, reading seasoning packets, eating no gravy, etc. Realized I was having a reaction to high fructose in the process of all this. The more I tightened my diet and stayed away from glutens and high fructose, the symptoms you described did go away. I am still on the Nexium as I am just trying to make sure my systom is healed and not bothered by acid. I have been able to cut back to one a day without the Pepto. This all took time, a very slow process.

  • 3 weeks later...
kennedymoore Rookie

I too suffered with gallstones, acid reflux and heartburn. I was able to treat all of those issues naturally. A HIDA scan confirmed the gallstones, I opted not to have surgery for the gallstones and contacted my holistic practitioner and did a gallstone flush. You have to be strong and healthy to do one, so you will need some guidance. I passed the stones and felt wonderful. For the acid problems, I came to realize that acid reflux and heartburn do not require OTC medications that suppress stomach acid production. We need our stomach acids to break down our food so as celiacs we can have better access to nutrients from our food. Most of us have low stomach acid. I take Premier Research Labs Pink Salt before each meal and at least 3-4 times during the day for energy as well. After every meal I take their HCL and HCL Activator. These supplements help with the following as well: Bacteria, inflammation, immune imbalance, yeast overgrowth, and anemia.

1. HCL and HCL Activator. Because I am anemic I was tested and it was determined I had low hydrochloric acid production. I take the HCL supplements with every meal. This helps with digestion tremendously. These capsules have to be opened placed in water and taken together after meals. Some people take it before, some during... from my studies I chose to do it after meals. This is often used to treat gut yeast. Here are some links about the pink sea salt and the Betaine HCL.

Open Original Shared Link

Open Original Shared Link

2. Premier Research Labs Pink Salt. Also helps with yeast, replacing minerals, insomnia, energy, etc.

Open Original Shared Link

Open Original Shared Link

Good Luck!

  • 3 weeks later...
glutenfree545 Newbie

My gluten intolerance was very neglected unknowingly which caused me ALOT of issues.....terrible burhing in the stomach was one issue. I was taking two Nexium and day and it ws not enough.I was doing 2 does of Pepto in between. I have been on Nexium now for 5 months....when I try to go off the burning in my stomach comes back. I too have found relief from alcohol but I wonder if that is because it numbs things? I also was having a terrible stiff neck which nothing seemed to help.....I tried all kinds of different exercises.I was having chest pains and heart palpitations, was not sure what was related to what. Kept tightening my gluten-free diet to the point of only eatinglabeled "gluten-free" oats and the like, reading seasoning packets, eating no gravy, etc. Realized I was having a reaction to high fructose in the process of all this. The more I tightened my diet and stayed away from glutens and high fructose, the symptoms you described did go away. I am still on the Nexium as I am just trying to make sure my systom is healed and not bothered by acid. I have been able to cut back to one a day without the Pepto. This all took time, a very slow process.

I was considering that fructose malabsorption was a likely suspect. I recently found that cutting tomatoes from my diet completely reduced the heartburn significantly and cut my trips to the bathroom to a normal amount. I'm on Sucralfate for the heartburn and it seems to work okay. I'm planning on scheduling an appointment to get a hydrogen breath test, which is apparently the test for fructose malabsorption.


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



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.