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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Chest & Neck Pain After Going Gluten/soy Free
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7 posts in this topic

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.

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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.

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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!

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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!

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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.

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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.

http://www.livestrong.com/article/329483-what-is-a-betaine-hcl-activator/

http://www.cocoonnutrition.org/catalog/page_hclactivator.php

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

http://www.naturalhealthyconcepts.com/pink-salt-p-premier-research.html

http://www.purelifenutrition.com/Pink-Sea-Salt-Premier-Research-Labs-12-oz_p_203.html

Good Luck!

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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.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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      I have not. I'll talk to my doctor about it
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