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

I Just Recovered...

emcmaster

By emcmaster
in Coping with Celiac Disease

Recommended Posts

emcmaster Collaborator
emcmaster
Posted

... from the worst pain I've ever felt since I started having symptoms. :unsure:

I woke up this morning to the most intense "they're-ripping-my-intestines-out-of-my-body" pain that I've ever felt. I've had bad pain like this probably 5 times and 4 out of those 5 were before I went gluten-free. I now know it was my body trying to tell me that I needed to be gluten-free.

But why this morning? And why did it feel much better after I let out some gas ( :embarrased: ) - it wasn't gas pains. It was intestinal pain. I literally felt like someone was ripping my intestines out of my body. It didn't help that my lower back was hurting in the same way.

From what I understand, symptoms of a glutening can change after a certain amount of healing. Have I been glutened? Because I always have severe pain with glutenings, but not like THIS.

And I always get extremely bloated with a glutening, which is thankfully not happening this morning. The only thing that I've eaten different in the past several days was communion wine at church sunday, where I was one of the first to drink from that cup.

Any insight would be appreciated. :)

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

Celiac.com Sponsor (A8-M):


dlp252 Apprentice
dlp252
Posted
... from the worst pain I've ever felt since I started having symptoms. :unsure:

I woke up this morning to the most intense "they're-ripping-my-intestines-out-of-my-body" pain that I've ever felt. I've had bad pain like this probably 5 times and 4 out of those 5 were before I went gluten-free. I now know it was my body trying to tell me that I needed to be gluten-free.

But why this morning? And why did it feel much better after I let out some gas ( :embarrased: ) - it wasn't gas pains. It was intestinal pain. I literally felt like someone was ripping my intestines out of my body. It didn't help that my lower back was hurting in the same way.

From what I understand, symptoms of a glutening can change after a certain amount of healing. Have I been glutened? Because I always have severe pain with glutenings, but not like THIS.

And I always get extremely bloated with a glutening, which is thankfully not happening this morning. The only thing that I've eaten different in the past several days was communion wine at church sunday, where I was one of the first to drink from that cup.

Any insight would be appreciated. :)

I get that from time to time as well. No doctor has ever been able (or actually made much of an attempt) to figure it out. IBS is what I've been told, but the pain is excruiating and when it hits, I can barely stand up. Mine isn't relieved by gas, but sometimes feels like it would if I had a bowel movement...only it doesn't really relieve it then either. I've had a colonoscopy which showed absolutely NOTHING wrong with my colon...squeaky clean, so, I really can't offer advice or thoughts...just comiserating! Sorry!

Gamecreature Rookie
Gamecreature
Posted

I wish I could answer your question, but I haven't been gluten-free long enough to know myself. But my symptoms have been very similar.

Just prior to seeing my GI (having him recomend that I go gluten-free) I started getting excruciating pain in my lower abdomen that kept me up most the night. Then it went away for a couple of days only to return, this time in the back and sides. My first thought was that maybe I was passing a kidney stone so I went to see my GP who decided to run some tests. The scan didn't show any problems with the appendix or kidneys, but did show swollen lymph glands (my GP explained that prior to scanning, this always the case of a false appendicitis diagnosis).

All well and good, except the pain kept coming and going every couple of days. My GP suspected diverticulitis and prescribed antibiotics which did nothing. Then the positive diagnosis for Celiac came back. My GI thinks the pains have something to do with Celiac, and he may be right. It's probably far too soon for this to clear up. So the pattern continues. This weekend I felt relatively well and thought that the pains were gone for good. But they came back yesterday - fortunately, not as intense as the first couple of times. Like you, I am at a loss to explain what's going on. All I can do is hope that they continue to diminish.

Green12 Enthusiast
Green12
Posted

I get this too, and many times throughout the year. Doesn't seem to matter what it is I am eating, not eating. Haven't had it checked out, so nothing to add there. Interesting though that a handful of us have this symptom.

emcmaster Collaborator
emcmaster
Posted
  • Author

Thanks everyone.

I'm guessing that it is part of the healing process and something we have to deal with. I'm thankful that it only lasted 45 minutes and that I feel fine now.

:)

Gamecreature Rookie
Gamecreature
Posted
I'm guessing that it is part of the healing process and something we have to deal with. I'm thankful that it only lasted 45 minutes and that I feel fine now.

:)

I'm looking forward to that. Mine last half a day or more. :( But then again, it's early for me.

almostnrn Explorer
almostnrn
Posted

I have a pain too, but I'd almost describe it as a burning in my gut. Is this by chance what anyone is talking about. I've mentioned it to my GI doctor with little response and have always wondered what it was. It doesn't happen too frequently anymore thankfully.

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

Celiac.com Sponsor (A8-M):


daffadilly Apprentice
daffadilly
Posted

just guessing here but burning the in the gut sounds like it could be allergy or glutening. dairy?

severe pain - have you checked your gall bladder? cyst on ovary? bladder infection? kidney stones/gravel??

Sorry not much help...

jaten Enthusiast
jaten
Posted

emcmaster, the pain you describe is similar to the pain I used to have before my Celiac diagnosis. Any time I ate anything I felt like someone was scraping my intestines with their fingernails or a paint scraper. It was horrendous pain inside my gut, and like someone else said, it would last for many hours.

I have not had that feeling since I really began to heal so I'm not sure if we're talking about the same thing or not. (About 6 mos now, since I've had that terrible pain)

I hope you feel better.

JenKuz Explorer
JenKuz
Posted
... from the worst pain I've ever felt since I started having symptoms. :unsure:

I woke up this morning to the most intense "they're-ripping-my-intestines-out-of-my-body" pain that I've ever felt. I've had bad pain like this probably 5 times and 4 out of those 5 were before I went gluten-free. I now know it was my body trying to tell me that I needed to be gluten-free.

But why this morning? And why did it feel much better after I let out some gas ( :embarrased: ) - it wasn't gas pains. It was intestinal pain. I literally felt like someone was ripping my intestines out of my body. It didn't help that my lower back was hurting in the same way.

From what I understand, symptoms of a glutening can change after a certain amount of healing. Have I been glutened? Because I always have severe pain with glutenings, but not like THIS.

And I always get extremely bloated with a glutening, which is thankfully not happening this morning. The only thing that I've eaten different in the past several days was communion wine at church sunday, where I was one of the first to drink from that cup.

Any insight would be appreciated. :)

I've had this a couple of times. Once I went to the ER cause I was afraid it might be appendicitis (it wasn't). It felt like someone was trying to turn me inside out through my belly button. Or slashing me across the belly.

Other times it's under the right ribs, right where the gallbladder is. It feels like someone is stabbing in the ribs with a very large knife. Doc said based on ultrasound he could basically guartantee my gallbladder was okay, but the pains come back and so I'm not fully convinced by his reassurances. Both my folks have gallbladder problems. Dad had his removed, mon mostly likely will...

Anyhow, it's amazing how doctors are willing to say, "Well, that's probably just gas." And maybe it is. But a pain like that wouldn't recur from just gas unless there were something wrong....seems to me.

Gamecreature Rookie
Gamecreature
Posted
Other times it's under the right ribs, right where the gallbladder is. It feels like someone is stabbing in the ribs with a very large knife. Doc said based on ultrasound he could basically guartantee my gallbladder was okay, but the pains come back and so I'm not fully convinced by his reassurances. Both my folks have gallbladder problems. Dad had his removed, mon mostly likely will...

My gallbladder symptoms were within an hour or two of eating and were usually after eating fatty foods (now I'm not so sure). In addition to the quesiness, I had a terrible lethargy, like I wanted to just lay down and sleep.

My celiac symptoms showed up about the same time and made me wonder if I was ever going to feel better.

Aerin328 Apprentice
Aerin328
Posted

It was only a couple weeks after I went gluten-free that I had terrible horrible intestinal pains. They occurred after every time I ate for about three weeks (even though I was gluten-free), then went away. I also think it's true the body reacts to gluten in a different way once gluten has been removed for a while: if you've removed it and then added it here or there, the reaction can be even stronger which can cause pain. Such reactions can be delayed after eating gluten. Just my take. Good luck!

Gamecreature Rookie
Gamecreature
Posted

I think there's both a short-term and long-term component to Celiac that we have to deal with. The short term we're all familiar with - the immediate reaction to gluten and the relief we feel when we stop eating gluten. However, there's also the long-term effect. After all, it's going to take months before my intestines absorb food normally, so I'm going to have to put up with all of the problems of malabsorption during that time. Everytime food doesn't get digested correctly and passed on to the colon invites another round of symptoms to deal with. Does that make sense?

happygirl Collaborator
happygirl
Posted

Elizabeth,

I'm sorry you had to go through that---how awful! But I'm happy it has resolved and you are back to being great....

Laura

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,158
    • Most Online (within 30 mins)
      7,748
    MollyK
    Newest Member
    MollyK
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.