Burning Sensation in Gut

[MissiMissi]

Hey Guys,

I'll post the question first in case you don't have time to read my story.  Does/can gluten expose cause burning pain in the gut area? It seems when I MIGHT have a gluten exposure I get a "flare" of burning pain in my gut - mostly my left upper area.  If I KNOW I've eaten gluten I get the burning plus the awful cramps and like I have constipation and diarrhea at the same time, my joints hurt like crazy and feel a little dizzy and this goes on strong for at least two days and takes what seems two to three weeks to go away.

Backstory: My gut has been sick for 5 years. My gastro doc ran the basic tests (colonoscopy, endoscopy with all the biopsies, etc.) and my GP ran all the other stuff (CT scan, Echo of gallbladder, bloodwork).  ALL normal except slight gastritis in stomach and a few diverticuli along my colon.  Gastro doc said I have classic IBS.  I have seriously tried every single diet change on the planet to heal up, and some have been quite extreme.  The ONE thing I found for sure is that if I go strict without gluten and dairy for, say, 3 weeks, and then eat gluten again I get sicker than a dog.  Now, during all my tests, my gastro doc biopsied me for celiac but at the time I didn't KNOW he was going to test me for it and HE didn't know I wasn't eating gluten.  When he told me the celiac came back negative I said that was good because I hadn't been eating gluten for awhile anyway.  The gasto doc was shocked and said the NEGATIVE results could totally be wrong.  He told me to "Go eat all the bread that God made and come see me so we can redo the test".  I took some gluten afterwards and immediately got sick. I didn't go back to my gastro doc because I wasn't about to continue to eat the gluten for 2 weeks.  My GP doc says he wants to diagnose me with celiac just based on my symptoms alone.  

Now, the burning pain in my left upper side is so awful.  Like a 6 or 7 on my pain scale.. and I've birthed 6 children with no meds.  It used to come and go and now it's mostly here.  I try hard to stay away from gluten but since the pandemic have been eating out "gluten free" and I think I get exposed.  Yet, I'm still not sure if I am even celiac!  I read somewhere that if a person is highly sensitive to gluten that an exposure can make them sick for up to a year?  Now my GP doc wants to run more tests to see if I have other issues.  My main question is whether gluten exposure can cause this type of burning pain?  Has anyone else experienced this?

Thanks, Missi

 

[Scott Adams]

Celiac disease can certainly cause gut pain, and in my case it was focused on my lower right side, but it can be different in different people. Of course your pain could be related to something else, especially if you have been gluten-free for a while, so be sure to discuss it with your doctor to rule out other causes.

As you know, you need to be eating gluten daily for 4-6 weeks to get tests done for celiac disease, but this is only the case if you require a diagnosis to stay on a gluten-free diet for life, as some people do need this in order to make such a big life change. A diagnosis may make it harder and more expensive to obtain private health or life insurance, but it will allow your doctor to do follow up testing on you, as should be done in those with celiac disease.

[Awol cast iron stomach]

I get very painful burning in my stomach and at the lower junction of my esophagus and stomach. My stomach and the junction of the esophagus/ stomach was visibly inflamed damaged and discolored at the time of my scopes. Seen before they even took the sample. The scope  of the area revealed mass infiltration of  inflammatory markers there .

My intestines burn but I feel the pain up higher helps masks some of the intestine pain.  Instead my intestines tend to feel "dead" dysfunctional, open space, and a constant ache.

I get very many other symptoms as well, but I kept it to the internal tract and organs as you asked.

I wish you well on your diagnosis path and healing journey. Be well.

[GFinDC]

Yes, gluten can cause gut pain.  The damage from celiac disease is progressive and tends to increase over time.  So the  longer a person with celiac eats a gluten diet the more damage and the more potential pain.

Healing is variable and the progress depends on many factors.  But the less exposure to gluten the fewer times the immune system is triggered to attack.  The less the immune attack the faster the healing.  So avoiding gluten is the key.

Even small amounts of gluten can trigger the immune system.  Think of germs so small you can't see them with the naked eye.  But the immune system detects them.

[MissiMissi]

Thanks for the comments!  It's nice to know that the burning sensation isn't completely foreign to some others.  I have been "strict" gluten-free for the last 2 weeks and the pain has subsided by about 80%, thankfully.  Now I'm keeping a food/symptom journal to see if there is something else that triggers an attack.  There was a type of diet I'd followed strict for a few months that was both gluten and dairy free, along with a host of other "no" foods, such as onion, cabbage, nuts, processed sugars, etc. and it seemed to completely heal up my gut.  It was wonderful.  Problem is that I didn't know which of those foods, or combination of foods, was making me sick.  Well, now I know for CERTAIN that gluten and dairy were two of them.  But the other foods... ugh... what time and work that has to go into this!  I made a decision that barring an emergency that I'm not eating out anymore.  At least now I have control over my ingredients (I hope).  

My doc says he'd be happy to diagnose me with celiac... but maybe I don't want him to.  I don't really need an official diagnosis to feel legitimized.  I know I eat it and I get sick.  That's enough for me.  He does, however, want to run a CT angiogram to see if I'm getting proper blood flow to my gut as he's concerned my pain level can get so high.  He wanted to rule out any blood flow issues.  This pain comes and goes and is likely corresponding to a gluten exposure, so I'm not sure I want to expose myself to another round of dye.  

Peace.

[zenith12]

On 5/22/2020 at 11:22 AM, MissiMissi said:

Hey Guys,

I'll post the question first in case you don't have time to read my story.  Does/can gluten expose cause burning pain in the gut area? It seems when I MIGHT have a gluten exposure I get a "flare" of burning pain in my gut - mostly my left upper area.  If I KNOW I've eaten gluten I get the burning plus the awful cramps and like I have constipation and diarrhea at the same time, my joints hurt like crazy and feel a little dizzy and this goes on strong for at least two days and takes what seems two to three weeks to go away.

Backstory: My gut has been sick for 5 years. My gastro doc ran the basic tests (colonoscopy, endoscopy with all the biopsies, etc.) and my GP ran all the other stuff (CT scan, Echo of gallbladder, bloodwork).  ALL normal except slight gastritis in stomach and a few diverticuli along my colon.  Gastro doc said I have classic IBS.  I have seriously tried every single diet change on the planet to heal up, and some have been quite extreme.  The ONE thing I found for sure is that if I go strict without gluten and dairy for, say, 3 weeks, and then eat gluten again I get sicker than a dog.  Now, during all my tests, my gastro doc biopsied me for celiac but at the time I didn't KNOW he was going to test me for it and HE didn't know I wasn't eating gluten.  When he told me the celiac came back negative I said that was good because I hadn't been eating gluten for awhile anyway.  The gasto doc was shocked and said the NEGATIVE results could totally be wrong.  He told me to "Go eat all the bread that God made and come see me so we can redo the test".  I took some gluten afterwards and immediately got sick. I didn't go back to my gastro doc because I wasn't about to continue to eat the gluten for 2 weeks.  My GP doc says he wants to diagnose me with celiac just based on my symptoms alone.  

Now, the burning pain in my left upper side is so awful.  Like a 6 or 7 on my pain scale.. and I've birthed 6 children with no meds.  It used to come and go and now it's mostly here.  I try hard to stay away from gluten but since the pandemic have been eating out "gluten free" and I think I get exposed.  Yet, I'm still not sure if I am even celiac!  I read somewhere that if a person is highly sensitive to gluten that an exposure can make them sick for up to a year?  Now my GP doc wants to run more tests to see if I have other issues.  My main question is whether gluten exposure can cause this type of burning pain?  Has anyone else experienced this?

Thanks, Missi

 

OMG YES IT DOES.  I had burning many times. Mainly when i would go to sleep at night and i would get up and go pee pee then go back to bed and while i was getting groggy i would feel that burning. I had it many times. And i would be thinking why is my stomache burning?  now i know why.  You need to give up all gluten. I heard your intestines can explode. Y the heck are all these tests that main stream docs are given are coming up negative? that insane. Take a simple 550.00 saliva hormone test and its accurate.  Mine came up by accident from a simple saliva test which tested for hormones and the wheat protein antibodies.   I hate to to break the news to u but you can NEVER eat out again and only eat 1 ingredient foods. That works for me at least.  I won't ever be able be able to travel again too. At least not out of the U S.  I can't go without food that long.

And a lot of gluten-free foods are NOT gluten free just to let you know.  If u eat it and don't react chances are it is, but if you react it isn't gluten free. And most gluten-free foods have  10ppm or 20ppm. which is way more than enough to gluten  you.

[zenith12]

On 5/22/2020 at 11:22 AM, MissiMissi said:

Hey Guys,

I'll post the question first in case you don't have time to read my story.  Does/can gluten expose cause burning pain in the gut area? It seems when I MIGHT have a gluten exposure I get a "flare" of burning pain in my gut - mostly my left upper area.  If I KNOW I've eaten gluten I get the burning plus the awful cramps and like I have constipation and diarrhea at the same time, my joints hurt like crazy and feel a little dizzy and this goes on strong for at least two days and takes what seems two to three weeks to go away.

Backstory: My gut has been sick for 5 years. My gastro doc ran the basic tests (colonoscopy, endoscopy with all the biopsies, etc.) and my GP ran all the other stuff (CT scan, Echo of gallbladder, bloodwork).  ALL normal except slight gastritis in stomach and a few diverticuli along my colon.  Gastro doc said I have classic IBS.  I have seriously tried every single diet change on the planet to heal up, and some have been quite extreme.  The ONE thing I found for sure is that if I go strict without gluten and dairy for, say, 3 weeks, and then eat gluten again I get sicker than a dog.  Now, during all my tests, my gastro doc biopsied me for celiac but at the time I didn't KNOW he was going to test me for it and HE didn't know I wasn't eating gluten.  When he told me the celiac came back negative I said that was good because I hadn't been eating gluten for awhile anyway.  The gasto doc was shocked and said the NEGATIVE results could totally be wrong.  He told me to "Go eat all the bread that God made and come see me so we can redo the test".  I took some gluten afterwards and immediately got sick. I didn't go back to my gastro doc because I wasn't about to continue to eat the gluten for 2 weeks.  My GP doc says he wants to diagnose me with celiac just based on my symptoms alone.  

Now, the burning pain in my left upper side is so awful.  Like a 6 or 7 on my pain scale.. and I've birthed 6 children with no meds.  It used to come and go and now it's mostly here.  I try hard to stay away from gluten but since the pandemic have been eating out "gluten free" and I think I get exposed.  Yet, I'm still not sure if I am even celiac!  I read somewhere that if a person is highly sensitive to gluten that an exposure can make them sick for up to a year?  Now my GP doc wants to run more tests to see if I have other issues.  My main question is whether gluten exposure can cause this type of burning pain?  Has anyone else experienced this?

Thanks, Missi

 

2nd part: 

And a lot of gluten-free foods are NOT gluten free just to let you know.  If u eat it and don't react chances are it is, but if you react it isn't gluten free. And most gluten-free foods have  10ppm or 20ppm. which is way more than enough to gluten  you.

Here is what i eat on a daily basis. Some processed foods that i already know has never glutened me but not 3 times per day:  EVOL meal (steak), 1 Amys meal, (only 1 i like), Chili Relano,  Saffron road india chicken meal. Aldis brownies or cookies (certified gluten free).  I recently got glutened from the General TSO chicken they say was certified.  I also eat but not much, sweet street brownies. I eat half. They are rich and high in sugar and calories. 

here is the only thing i eat :  But want to try the certified gluten free Kettle chips but at the moment  NOT BRAVE ENOUGH YET.

Advocados

cheese

almonds

beef

eggs

blueberries

Udis cinnamon bread( yucky though)

shredded coconut

potatoes

salt

Buttermilk ranch dressing from aldis

 

And thats about it.  My stomach does well on one ingredient foods. No wonder years ago i remember having pot lucks and when ever i eat stuff with  a lot of ingredients and many items  my stomach NEVER felt good.

I buy my almonds and blueberries from farms

Good luck and stay healthy

[cyclinglady]

@MissiMissi

Welcome to the forum!  It certainly unfortunate that you have been in diagnostic limboland.  It is frustrating to know that you had the endoscopy, but because you were already on a gluten free diet, your biopsies came up negative.  Only you can decide whether or not it is worth getting a formal diagnosis. 

I am formally diagnosed (antibodies and biopsies).  I was diagnosed 12 years after my husband was advised by my allergist and his PCP/GP to trial the gluten free diet.  The diet worked for my husband.  We are pretty sure that he has celiac disease or at least NCGS (strong history of autoimmune in his family).  He refuses to do a challenge, because frankly, we need to pay our bills.   However, he would be the first to say that I receive way more support from family, medical and friends.  My diagnosis has allowed me to get tested easily for other autoimmune disorders before they cause major damage.  It has insured me that I can get safe food in jail, at a university, or hospital (in theory!). (I carry a letter from my doctor.  I have used it at high school football games thus allowing me to bring in my own food.   It has allowed for my daughter to get tested twice so far, even if she is symptom free.  Being able to purchase medical insurance is no longer a problem with the American health Act, however, a celiac disease diagnosis could impact qualifying for life insurance (that needs to be investigated).  So, life insurance probably just impacts younger people.  

My pain from gluten exposures can be intense.  I actually pass out.  I suffer for weeks, not just a few days.  It will hurt just to digest anything making me dread having to eat anything at all.  Every celiac is different and we all have different thresholds for gluten and how we react.     Did I mention that I can actually see stomach inflammation just under my left rib cage?  My stomach and the duodenum can actually pinch if I lean forward.  Enough to take my breath away.  Of course all this resolves in a gluten-free diet.  Oddly, I just had anemia when I was diagnosed, but I have learned that celiac disease is like a chameleon— always changing.  

My last endoscopy revealed healthy villi, so it is possible to heal.   You will find your way!  

[MisterSeth]

I ate 2 bananas for breakfast a few days ago and had that happen. It settled down after I had some roasted/salted almonds. I decided I'm probably not banana intolerant because my poop was solid/sank to the bottom. I eat too much sugar, I work in a freezer warehouse that probably causes me to burn 3000+ calories a day and I'm always hungry to the point of weakness after work, if I force myself to fill up on fiber it really makes my gut feel better. It's very hard to get fibre not being able to eat bran, and i'm not sure rice has very much. nuts and legumes are excellent and I'm lucky enough not to be intolerant. I also found these herbaland "protein gummies" that are meant as a workout supplement but have 96% of your daily fibre in one bag. 

anyways try eating more protein and fibre, hopefully you can find a source you're tolerant to. I think salt also has a mild antacid effect, it occurs to me now that us celiacs may not have the "benefit" of getting excess sodium in all our foods

[Lyns5201]

On 6/1/2020 at 5:55 AM, MissiMissi said:

Thanks for the comments!  It's nice to know that the burning sensation isn't completely foreign to some others.  I have been "strict" gluten-free for the last 2 weeks and the pain has subsided by about 80%, thankfully.  Now I'm keeping a food/symptom journal to see if there is something else that triggers an attack.  There was a type of diet I'd followed strict for a few months that was both gluten and dairy free, along with a host of other "no" foods, such as onion, cabbage, nuts, processed sugars, etc. and it seemed to completely heal up my gut.  It was wonderful.  Problem is that I didn't know which of those foods, or combination of foods, was making me sick.  Well, now I know for CERTAIN that gluten and dairy were two of them.  But the other foods... ugh... what time and work that has to go into this!  I made a decision that barring an emergency that I'm not eating out anymore.  At least now I have control over my ingredients (I hope).  

My doc says he'd be happy to diagnose me with celiac... but maybe I don't want him to.  I don't really need an official diagnosis to feel legitimized.  I know I eat it and I get sick.  That's enough for me.  He does, however, want to run a CT angiogram to see if I'm getting proper blood flow to my gut as he's concerned my pain level can get so high.  He wanted to rule out any blood flow issues.  This pain comes and goes and is likely corresponding to a gluten exposure, so I'm not sure I want to expose myself to another round of dye.  

Peace.

I also get the horrible symptoms of burning inflamed stomach to where I don’t want to eat, it’s what led to my diagnoses as one of my main and worst symptoms actually.... and what do you eat during one of these flares?it seems anything and everything even plain food during this time hurts my stomach sadly so I just don’t really eat which is hard cause it feels like my body is starving for nutrients as a newly diagnosed celiac...I recently had to do a second endoscopy to confirm diagnoses after over a month of eating gluten again and they found my lower stomach lining has actually been inflamed as well as the celiac damage in my small intestine..no wonder it’s burned so much..my burning pain used to come and go as well but as of lately (I’m assuming the longer I’ve had celiacs the worse it’s gotten)it’s become a 24/7 thing almost..I also figured out drinking anything with soy burns it even more! I was really beginning to worry I was the only one with this symptom.. really hoping this improves soon it’s driving me nuts,all I can do is lay down with a heating bad. I also recall about a month ago after eating all the gluten possible at Panera bread, the next morning the burning pain was basically excruciating and couldn’t figure out why till I put two and two together.