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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.