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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.

Does Anyone Else Get Terrible Upper Stomach Pain?
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For the last 6 months in addition to my other symptoms I have been plagued with a flair up of stomach pain. The pain will last a good week or two then go away for a week then return. Its upper stomach. Hurts pretty bad. I have been tested for practically everything from head to toe including heart. I am apparently healthy. I tried all the antacids with no success. The pain clinically speaking is very similar to a stomach ulcer or severe gastritis. However, my endoscopy reported zero ulcerations and makes no mention of gastritis. I have been in the ER and medicated with morphine to reduce the pain, its that bad. Recently I noticed that when I drink cold water I get a moment of relief when the cold water hits my stomach. Also in the hospital when given a GI cocktail I noticed a 90% improvement in pain, so much in fact that the ER doctor prescribed my own take home GI cocktail.

When I was tested for Gluten I had already been off the Gluten for 6 months and only returned for the week prior. So my blood tests were negative. The endoscopy was done, without any biopsies or mentions of celiac. Its crazy I know but they honestly did not even think of food allergies or celiac when they tested me.

I am back to eating gluten, its been about 2 months. I am getting tested again very shortly and have a laundry list of health symptoms but the most aggressive is the stomach pain. I also get acid reflux to the point of coughing and a hoarse voice. PPI and antacids actually seemed to give me terrible headaches and made me more constipated than I already am.

Does anyone else experience this type of pain? When I was younger I would get the really bad cramping in the lower abdomen region and many times had horrible cramping right in the appendix area(tested 3 times). My pain as I get older I am 34 seems now just be focused terribly in the stomach.

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For the last 6 months in addition to my other symptoms I have been plagued with a flair up of stomach pain. The pain will last a good week or two then go away for a week then return. Its upper stomach. Hurts pretty bad. I have been tested for practically everything from head to toe including heart. I am apparently healthy. I tried all the antacids with no success. The pain clinically speaking is very similar to a stomach ulcer or severe gastritis. However, my endoscopy reported zero ulcerations and makes no mention of gastritis. I have been in the ER and medicated with morphine to reduce the pain, its that bad. Recently I noticed that when I drink cold water I get a moment of relief when the cold water hits my stomach. Also in the hospital when given a GI cocktail I noticed a 90% improvement in pain, so much in fact that the ER doctor prescribed my own take home GI cocktail.

When I was tested for Gluten I had already been off the Gluten for 6 months and only returned for the week prior. So my blood tests were negative. The endoscopy was done, without any biopsies or mentions of celiac. Its crazy I know but they honestly did not even think of food allergies or celiac when they tested me.

I am back to eating gluten, its been about 2 months. I am getting tested again very shortly and have a laundry list of health symptoms but the most aggressive is the stomach pain. I also get acid reflux to the point of coughing and a hoarse voice. PPI and antacids actually seemed to give me terrible headaches and made me more constipated than I already am.

Does anyone else experience this type of pain? When I was younger I would get the really bad cramping in the lower abdomen region and many times had horrible cramping right in the appendix area(tested 3 times). My pain as I get older I am 34 seems now just be focused terribly in the stomach.

Hi asickdaddy,

I'm not exactly sure what you mean by upper stomach pains. I have been having acid reflux for about the past month....that is new to me. Also, after eating (and I've been intentionally eating a LOT of gluten the past few weeks in preparation for biopsy) I feel like I have a brick in my stomach. Not a rock...but a brick, with rough edges... so it feels awful. Not sure if it has anything to do with celiac disease, or if I have some other issues going on, but that's how my tummy feels. Its very uncomfortable.

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Yea I know the pain your talking about. It hurts so bad you can barely breathe or move. I did have one trip to the ER where they thought I was having a heart attack but in the end the GI Cocktail took care of it. What I take for it now, when I get glutened, is Pepto Bismal. That seems to coat stuff pretty quick and ends the pain. You could try that or you could ask the doctor for a script of what they gave you at the ER to take when you need it until your challenge is over.

Hopefully once you are done with the challenge you will heal quickly.

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Thanks for the replies. The pain honestly is like a wound, it feels like a sharp stabbing pain that never goes away, like an ulcer. I honestly thought pancreatitis or something horrible but all of my testing was clear. The ER doctor does call it gastritis but yet my endo was clear of ulcers or gastritis. Its absolutely terrible. I think it gets worse when I eat foods containing dairy, which I never could tolerate but now that I have messed with the gluten it seems even cheese just throws gas on the fire, when I used to eat cheese ok. I have yet to find foods that do not make it worse and I am struggling for sure, I have at least another week to go before I get blood tested. I am hoping that its just the gluten rather than a new issue.

I have been putting a hot water bottle on my stomach and that helps. When I go to sleep honestly the pain disappears but then i wake up in the morning and it feels like a sore muscle that slowly through the day devolves back into the sharp annoying pain.

I agree the pepto is pretty good, so is milk of magnesia. Both seem to give some relief. However, I have been drinking them now for months. It can't be good to just continue.

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You could try some peppermint tea, it might help. Peppermint relaxes the muscles in in GI tract. It can help with getting gas out if there is a build up. It is not something you should stay on all the time though.

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Thanks for the replies. The pain honestly is like a wound, it feels like a sharp stabbing pain that never goes away, like an ulcer. I honestly thought pancreatitis or something horrible but all of my testing was clear. The ER doctor does call it gastritis but yet my endo was clear of ulcers or gastritis. Its absolutely terrible. I think it gets worse when I eat foods containing dairy, which I never could tolerate but now that I have messed with the gluten it seems even cheese just throws gas on the fire, when I used to eat cheese ok. I have yet to find foods that do not make it worse and I am struggling for sure, I have at least another week to go before I get blood tested. I am hoping that its just the gluten rather than a new issue.

I have been putting a hot water bottle on my stomach and that helps. When I go to sleep honestly the pain disappears but then i wake up in the morning and it feels like a sore muscle that slowly through the day devolves back into the sharp annoying pain.

I agree the pepto is pretty good, so is milk of magnesia. Both seem to give some relief. However, I have been drinking them now for months. It can't be good to just continue.

I mention this because it causes the same pain for me that gluten does, have you eliminated soy? Soy doesn't cause all the same symptoms for me that gluten does but it does cause that awful pain and it took me a really long time to finally figure it out. When you are able to go back to the gluten-free diet you may want to consider eliminating soy as well as the dairy for a bit and see if that might help.

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Does it feel like muscle pain? I have had severe pain below my chest for a few years but the cause is from myofascial pain syndrome resulting from herniated discs in my back. Trigger points are located there. When my doctor presses the area I nearly jump into the air. It worsened when I had bronchitis and pneumonia in December (all that coughing) and remains. Mine is referred pain that radiates from my back and shoulder blades. Could be an entirely different issue but maybe something else to consider? :huh: This pain actually mimics heart attacks. :(

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Prior to diagnosis, I had this exact symptom...along with many others. It would feel like someone was stabbing me in between my ribcage. The only thing that would even provide some relief was a heating pad and as much pressure I could manage on the exact spot. I did end up in the ER once. The GI cocktail did nothing for me. They called it gastritis. Within three days of going gluten-free, the pain was gone.

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I also have this pain as my primary symptom. I keep telling my family it's like I've swallowed a porcupine. I was misdiagnosed with gastritis, but the upper endoscopy didn't show any gastritis.

I have terrible reactions to the PPI's and Zantac-like medications. They actually GIVE me heartburn and reflux, in addition to horrible digestive side effects. Could those medications be aggravating your symptoms? I begged my doctor to take me off Nexium, and when she agreed I should give it a try, she was amazed that so many of my symptoms improved (except the porcupine pain...).

Going gluten free has cured the pain for me, despite my negative blood tests and negative biopsy for celiac. I still don't know what illness I have.

Good luck feeling well again!

Lisa

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For the last 6 months in addition to my other symptoms I have been plagued with a flair up of stomach pain. The pain will last a good week or two then go away for a week then return. Its upper stomach. Hurts pretty bad. I have been tested for practically everything from head to toe including heart. I am apparently healthy. I tried all the antacids with no success. The pain clinically speaking is very similar to a stomach ulcer or severe gastritis. However, my endoscopy reported zero ulcerations and makes no mention of gastritis. I have been in the ER and medicated with morphine to reduce the pain, its that bad. Recently I noticed that when I drink cold water I get a moment of relief when the cold water hits my stomach. Also in the hospital when given a GI cocktail I noticed a 90% improvement in pain, so much in fact that the ER doctor prescribed my own take home GI cocktail.

When I was tested for Gluten I had already been off the Gluten for 6 months and only returned for the week prior. So my blood tests were negative. The endoscopy was done, without any biopsies or mentions of celiac. Its crazy I know but they honestly did not even think of food allergies or celiac when they tested me.

I am back to eating gluten, its been about 2 months. I am getting tested again very shortly and have a laundry list of health symptoms but the most aggressive is the stomach pain. I also get acid reflux to the point of coughing and a hoarse voice. PPI and antacids actually seemed to give me terrible headaches and made me more constipated than I already am.

Does anyone else experience this type of pain? When I was younger I would get the really bad cramping in the lower abdomen region and many times had horrible cramping right in the appendix area(tested 3 times). My pain as I get older I am 34 seems now just be focused terribly in the stomach.

I also have these same symptoms. I am in week 3 of a gluten challenge after a month off. I also occasionally experience acid reflux with this. I have tried Tums and pepcid ac which have no affect. I only get relief when I am sleeping.

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Add me to the list of people who had this prior to going gluten free and have not had it since.

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OMG! Yes! For the last 2 weeks my upper stomach (under the ribcage) felt like someone was inside my stomach stabbing me with knives. It felt like a big knot of gas that wouldn't go up or down and the only thing that would help was laying on my stomach and massaging it. Horrible. It hasn't happened for a long time but I went off my gluten-free diet (I have IBS but my blood test was negative on the celiac)when I was going through a divorce and was just trying to survive with three kids. I was eating starchy, wheaty comfort food crap like mac and cheese and pizza. I knew it was going to catch up to me eventually. Anyway within two days of eliminating gluten again it went away.

It's exhausting to be sick to your stomach all the time and not knowing how you are going to react every time you eat. I think I've finally learned my lesson.

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For the last 6 months in addition to my other symptoms I have been plagued with a flair up of stomach pain. The pain will last a good week or two then go away for a week then return. Its upper stomach. Hurts pretty bad. I have been tested for practically everything from head to toe including heart. I am apparently healthy. I tried all the antacids with no success. The pain clinically speaking is very similar to a stomach ulcer or severe gastritis. However, my endoscopy reported zero ulcerations and makes no mention of gastritis. I have been in the ER and medicated with morphine to reduce the pain, its that bad. Recently I noticed that when I drink cold water I get a moment of relief when the cold water hits my stomach. Also in the hospital when given a GI cocktail I noticed a 90% improvement in pain, so much in fact that the ER doctor prescribed my own take home GI cocktail.

When I was tested for Gluten I had already been off the Gluten for 6 months and only returned for the week prior. So my blood tests were negative. The endoscopy was done, without any biopsies or mentions of celiac. Its crazy I know but they honestly did not even think of food allergies or celiac when they tested me.

I am back to eating gluten, its been about 2 months. I am getting tested again very shortly and have a laundry list of health symptoms but the most aggressive is the stomach pain. I also get acid reflux to the point of coughing and a hoarse voice. PPI and antacids actually seemed to give me terrible headaches and made me more constipated than I already am.

Does anyone else experience this type of pain? When I was younger I would get the really bad cramping in the lower abdomen region and many times had horrible cramping right in the appendix area(tested 3 times). My pain as I get older I am 34 seems now just be focused terribly in the stomach.

i had stomach pains before i was diagnosed with celiac, i just stuck off the gluten and they went away

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I have the same pain (upper ab, below sternum) feels like a big knot, some times it feels like I am short of breath as well. I am new to gluten-free diet so I suspect I am still getting glutened in some foods. When I stay pure with for sure clean food (boiled eggs) i feel great...

What a great adventure

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OMG, YES!! The horrible upper left sided stomach pain is what caused me to see the doc who ordered the celiac testing that came back positive! I had seen several other docs for it and they all said the same thing....reflux, GERD, fibromyalgia (that one was a stretch), and nothing worked to get rid of it! It was like a knife right under my upper left ribcage that went tru to my back.

My CT scan was negative, so there are no tumors or anything. My theory is it is something called "Splenic Flexure Syndrome" due to the excess gas from my gluten-intolerance. It gets trapped right there and causes major spasms, hence the stabbing pains. Hopefully after my biopsy when I can go gluten free, it will never come back!

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I had a burning pain in my stomach that reached to my sides. Almost felt like I had the inner lining of my stomach ripped away and that something was irritating the new tissue. I was not having acid reflux issues and that has never seemed to be a problem for me but the burning was bad and would be made worse if I got upset or became anxious.

My doc put me on Nexium....one a day was not enough, went to 2 and I was still doing 1-2 doses of Pepto. What finally helped me was getting my diet clean of glutens. I read that bread/cakes and the like can cause the stomach to produce more acid (probably from the wheat) and I think that is what causes this. I had to allow my stomach time to heal and stayed on Nexium for over 5 months, eventually cut back to one and then got off them entirely.

I did get dosed her recently and my stomach started feeling sick gain....not as bad with the burning but I quickly took 2 Nexium a day to hep me thru.

Mine was bad and I really did feel there was damage in my stomach and concerned for what that could lead to I have been very careful to protect myself from acid foods. I do not think the over-the-counter stuff would have been enough for me.

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Red wine has done that to me the last few times I had it. I know red wine is supposed to be OK for us, but I can't drink it. The last time I did, I only had one very small glass, and the next day I was literally doubled over. It lasted about three days, and I haven't touched red wine since. Now that I'm gluten free, maybe I could try it again, but I don't want to take a chance - the pain was that bad.

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For the last 6 months in addition to my other symptoms I have been plagued with a flair up of stomach pain. The pain will last a good week or two then go away for a week then return. Its upper stomach. Hurts pretty bad. I have been tested for practically everything from head to toe including heart. I am apparently healthy. I tried all the antacids with no success. The pain clinically speaking is very similar to a stomach ulcer or severe gastritis. However, my endoscopy reported zero ulcerations and makes no mention of gastritis. I have been in the ER and medicated with morphine to reduce the pain, its that bad. Recently I noticed that when I drink cold water I get a moment of relief when the cold water hits my stomach. Also in the hospital when given a GI cocktail I noticed a 90% improvement in pain, so much in fact that the ER doctor prescribed my own take home GI cocktail.

When I was tested for Gluten I had already been off the Gluten for 6 months and only returned for the week prior. So my blood tests were negative. The endoscopy was done, without any biopsies or mentions of celiac. Its crazy I know but they honestly did not even think of food allergies or celiac when they tested me.

I am back to eating gluten, its been about 2 months. I am getting tested again very shortly and have a laundry list of health symptoms but the most aggressive is the stomach pain. I also get acid reflux to the point of coughing and a hoarse voice. PPI and antacids actually seemed to give me terrible headaches and made me more constipated than I already am.

Does anyone else experience this type of pain? When I was younger I would get the really bad cramping in the lower abdomen region and many times had horrible cramping right in the appendix area(tested 3 times). My pain as I get older I am 34 seems now just be focused terribly in the stomach.

I have this same pain and was just diagnosed with celiac 2 months ago the pain started right after my scoping.

I am trying to stay gluten free and the days I feel I have eaten everything right I still have the pain. I did have my gall bladder checked /nothing wrong there. I take prilosec every morning too. The pain seems worse at night will wake me up .

My doctor said maybe just nervous stomach from not knowing what to eat? He gave me script for zanax but I don't want to start that. This is all new for me and thinking I should just go back to eating gluten?

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I have upper stomach pain when I have a BM. [i am assuming it's my stomach] High upper right side under my ribs. It tightens up so hard it feels like a rock and it hurts like hell. It subsides after a few minutes, but while it's happening...I'd rather chew glass.

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I had that years ago. It may have been gluten symptoms... but it finally did go away. I tried ever med under the sun, nothing worked. Had to resort to 16 oz of water in the a.m. and constant water all day to tone it down. No acidicic foods. Had to use visualization to get rid of it.

Then I got pregnant and that solved just about every endometriosis, stomach, etc. problem I had. No kidding.

Of course, after I gave birth it was another ball of wax.

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Me too. Sharp pain that's usually where my solar plexus is, that can lance down to my bellybutton. Sometimes it moves to the left or the right, but... augh, that pain is horrible. Can't even stand up straight. Glad to know I'm not the only one who's had this!

(So far I'm undiagnosed, and the PPIs I'm taking haven't been helping)

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This is a very interesting thread. I have had severe cramping that happens when I don't eat any food for a while and then eat something with fiber in it (including fruit) or gluten products. It is REALLY brought on when I do this on a road trip (or when I commute to/from work). I had this a few days ago (sharp pain starting in the solar plexus area, spasms all the way down my GI tract to at least my small intestines)...lasted 4 hours and I was flat out exhausted from it. It was actually triggered this last time by a peach, of all things. I would guess that an antispasmodic drug would take care of the symptoms; I believe that is what I took when I was a kid and had this issue (I recall a small bottle of light green clear-ish liquid that I would take from my doctor; still remember the taste and that was about 30 years ago!). Could never understand why I had this issue, and it seems to occur randomly.

Been off gluten for about a month now, so don't know if it is really gluten-related or not at this point.

Emily

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Wow - My husband has been having these pains for the past 10 years. We called 911 the first time because it acted exactly like a heart attack. He then had them very rarely for a long time, but lately they have been coming closer together. It is right up near his sternum but he feels it really badly in his back as well. The Dr. recently called it GERD. My son was recently diagnosed with a blood test, and my husband had one that came back negative. I still have a gnawing feeling that he has it though.

Are you all saying that a gluten-free diet has made these pains stop? He had his gall bladder out last year and we were sure they were going to stop after that, but they haven't. I am more inclined to get the genetic testing than to move on to a biopsy for him. I figure if he is positive for the gene, then he should just start a gluten-free diet and go from there. That seems much less invasive than a biopsy. Any thoughts on that?

Thanks

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My fiance experiences regular heartburn but for the past hour he has been having a completely different type of pain in his upper stomach. It is so bad that he can't get comfortable and it won't go away! At first I thought it was gas but he's taking Gas X and even a pamprin...still, nothing has helped. If you have any educated or past experience suggestions or advice, we would greatly appreciate it.

Thank you!

Do you have any Pepto Bismal liquid? You could try that. However if this is a pain that is different than he has ever experienced don't assume it is gluten related. If it is severe a trip to the ER might be a good idea.

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I've had this off and on over the years before my diagnosis. It feels like glass is scraping the top of my abdomen. It's horrible, horrible pain. And I've had unmedicated child birth!

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