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
      131,859
    • Most Online (within 30 mins)
      7,748

    Lesley-Anne
    Newest Member
    Lesley-Anne
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.