Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

MissiMissi

Recommended Posts

MissiMissi Rookie

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

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

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 Experienced

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 Veteran

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 Rookie

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 Enthusiast
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 Enthusiast
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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

@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 Enthusiast

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

  • 1 year later...
Lyns5201 Collaborator
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. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Opinions on my test results/symptoms

    2. - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

    3. - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

    4. - knitty kitty replied to plumbago's topic in Related Issues & Disorders
      3

      Anyone else with very high HDL?

    5. - Nicbent35 replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,889
    • Most Online (within 30 mins)
      7,748

    Missymid
    Newest Member
    Missymid
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Many of the symptoms, there are over 200, associated with celiac disease and NCGS are vitamin and mineral deficiencies caused by small intestine damage in the case of celiac disease and food avoidance and the poor nutrittion of the Modern American Diet (MAD) I used to turn the heat on even at 78 degrees.  The 600 mcg of Liquid Iodine helped.  Also good for hair, nails, skin and brain fog.  Another good thing for brain fog is phosphatyl choline.  It is essentil for acetylcholine- a brain chemical. I have familial hyperlipdemia and instead of a statin I got a prescription for Nicotinic Acid, 2000 mg a day.  I was already taking 500 mg a day and was really surprised when my HDL when up to  44 and I began sleeping better and my legs and back are getting more flexible.  In addition after the first few doses of itchiness I get a warm fuzzy feeling Raising your vitamin D is crucial.  Low vitamin D allows the immune system to run amuck. intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe).  Look at Thiamin deficiency. consistently ran hot, was always cranking the a/c, to someone who wears a down vest.  Any combination of deficiencies in B1, B2, B3, B5, choline and Iodine can cause this.  Likely all of them. After a lifetime of mouthbreathing GFD cleared my sinuses.  Post nasal drip is my first symptom of cross contamination nowaday.  
    • Wheatwacked
      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
    • Wheatwacked
      Hi @Nicbent35,             When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration.       With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing.  In the meantime, though, continue on GFD.  Her health is more important than convincing a doctor.  Bring videos of her behaviors if you can.  Even if the blood tests and biopsy prove negative, that is part of the diagnosis process for NCGS and later when she is recovered you can always do a Gluten Challenge.      This is an important time in her developement.  Celiac Disease causes malabsorption syndrome, leading to malnutrition, regardles of what she eats.  Though NCGS may not cause malabsorption, it will affect food choices which can lead to malnutrition.  There may be benifits that an official diagnosis may have, but they don't trump a healthy child.      Get her healthy, then worry about validation later.  Celiac Disease is difficult to diagnosed, especially in children, because doctors look for antibodies in the blood and young children have immature immune systems.  Also you don't mention any gastrologic symtoms and celiac disease is traditionally considered gastrolic only.  Not true.  There are over 200 symptom that celiac disease and the accompaning malnutrion mimics or causes that often causes misdiagnosis and delay in recovery. While at the doctors, ask them about vitamin D deficiency and Iodine deficiency in particular. Milk being the primary source of iodine in the diet, but concerns exist regarding the lower iodine content in organic milk and reduced milk consumption in certain demographics.  Vitamin D deficiency is 40% of the industrialized population and a recent study in the Great Britain showed a wopping 60%, beaten only by some areas of Canada at 70%. And B1, B2, B3, B5 and B6.  Deficiencies in these are common in untreated Celiac Disease and they affect energy production. Are You Confused About Your Celiac Disease Lab Results?
    • knitty kitty
      @plumbago, Are you taking any folate with your B12?   Folate helps regulate HDL levels.  You may try taking a methylfolate supplement with your B12.   If there's a folate deficiency because you aren't absorbing sufficient folate, or have the MThF mutation causing a functional folate deficiency (methylfolate trap), you can have a functional B12 deficiency despite supplementing, resulting in HDL levels not getting regulated, but running high or low.   Pushing the envelope in explanations, too. P. S. Are you taking a B Complex?  Folate and B12 Cobalamine need enzymes made from B6 Pyridoxine's interaction with Thiamine, and B2 Riboflavin's interaction with Thiamine.  Is your Vitamin D low?
    • Nicbent35
      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
×
×
  • Create New...