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
glutenfree545
Posted

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
Bummed-out-Baker
Posted

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
micfunky
Posted

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
glutenfree545
Posted
  • Author

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
AVR1962
Posted

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
kennedymoore
Posted

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
glutenfree545
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.