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

What Is Your Most Annoying Symptom?

erin24

By erin24
in Coping with Celiac Disease

Recommended Posts

ebrbetty Rising Star
ebrbetty
Posted

mines more than annoying..stomach pain, its terrible..no one else gets severe pains?! :(

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

Celiac.com Sponsor (A8-M):


  • Replies 98
  • Created
  • Last Reply
penguin Community Regular
penguin
Posted
mines more than annoying..stomach pain, its terrible..no one else gets severe pains?! :(

I do! It's like digesting glass, or like my stomach is trying to eat itself. The only thing that helps is the fetal position and lots of drugs. I don't consider that an annoying symptom.

I consider it to be beyond adjectives...horrible, awful, terrible, atrocious, dreadful, excruciating, frightful, and appalling.

Sorry you get the pain, too :(

ebrbetty Rising Star
ebrbetty
Posted
I do! It's like digesting glass, or like my stomach is trying to eat itself. The only thing that helps is the fetal position and lots of drugs. I don't consider that an annoying symptom.

I consider it to be beyond adjectives...horrible, awful, terrible, atrocious, dreadful, excruciating, frightful, and appalling.

Sorry you get the pain, too :(

Chelse, I'm sorry you have it too, but it is good to know someone else has terrible pains, God they put me on the floor!

what drugs have you found to help, if any?

hugs, Betty

penguin Community Regular
penguin
Posted
Chelse, I'm sorry you have it too, but it is good to know someone else has terrible pains, God they put me on the floor!

what drugs have you found to help, if any?

hugs, Betty

Right now I have Bentyl (antispasmodic) and phenergan (but dear God don't take them at the same time!)

I take the bentyl if my stomach feels like it's going wierd on me, and phenergan when the pain is at it's worst, or at least bad. I take the phenergan suppositiories because I can't keep pills down when that happens.

Otherwise, they've given me vicodin or demerol. Demerol knocks it out almost immediately, but it's a bit too much of a controlled substance for me (usually got that in the ER). The vicodin worked, sometimes, and it usually took at least 2 doses to get it under control. Usually knocks me out for at least a day when it happens.

My current drugs have worked best for it when it happens. I still don't know what causes it, there's no rhyme or reason to it. I've only had it once since going gluten-free (but it's only been about 2 months) and that was a week into it. We'll see when it happens now (hopefully not at all!).

ebrbetty Rising Star
ebrbetty
Posted

thanks, I have the Bentyl too, tried so many, most don't do too much. I've only had it that bad about 4 times since gluten-free but belly still hurts almost everyday :( no one can understand the pain till they get it!!

take care :)

pinkpei77 Contributor
pinkpei77
Posted

i think the bloating is the most annoying.. i start out the day with a flat stomach and then after i eat ( no matter what it is) i bloat right up.. my tummy sticks out farther than my chest sometimes.

as far as the most painful.. id have to say the stomach pain.. like right below in the center ofmy boobs (sorry.. no other way to describe the spot)

its excruciating! it brings me to my knees and i sweat and get so hot and all i can do is go into the fetal position and rock back and forth.

the brain fog also sucks..

the fatigue is pretty extreme for me. luckily i only work about 16 hours a week so i have plenty of naptime.. but feel like im sleeping my life away

Rusla Enthusiast
Rusla
Posted

I get pain so bad I not only profusely sweat I feel like I am going to vomit and pass out.

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

Celiac.com Sponsor (A8-M):


Bonnie Explorer
Bonnie
Posted
Bonnie,

I am the same way...wake up in the morning feeling good b/c my stomach is flat then it immediately bloats up once I eat, even gluten-free food. Since I am new at this and have only been gluten-free for 3 weeks I wondering...has the bloating gotten better for you since being gluten-free? Or, does the bloating only happen when you eat gluten? I guess I am hoping that this constant state of bloating will go away once my intestines heal.

erin24, I have been strictly gluten free for a whole year - apart from once six months ago when I did my own "gluten challenge". Was sick for 10 days!

So a year down the line I am still bloating every single day. I take digestive enzymes with every meal which does help slightly - maybe look 5 months pregnant instead of 6 :rolleyes: .

I am really hoping that its just because my gut hasn't healed properly yet which I know it definitely hasn't.

Yvonne

Guest nini
Guest nini
Posted

all the symptoms suck, but THE most annoying for me is the vomiting and the subsequent RASH I get ALL OVER MY FACE... :angry: Then everyone I see asks me, what's wrong with you???? Or if they know me, WHAT did YOU get into??? OMG. The rash is the worst because it's visible and everyone can see it and wonders what weird disease I have.

erin24 Explorer
erin24
Posted
  • Author
all the symptoms suck, but THE most annoying for me is the vomiting and the subsequent RASH I get ALL OVER MY FACE... :angry: Then everyone I see asks me, what's wrong with you???? Or if they know me, WHAT did YOU get into??? OMG. The rash is the worst because it's visible and everyone can see it and wonders what weird disease I have.

But you do have a weird disease, remember :) Just kidding. Not tryin' to make light of your symptoms b/c it really stinks when other people can see it. If you feel bad on the inside or are bloated it's not obvious to the whole world.

My husband always says "I always knew you had some weird thing wrong with you" b/c I always complained about so many things.

Rusla Enthusiast
Rusla
Posted

Tell him you are like a box of chocolates. He didn't know what he was getting originally but now he has something special and, wonderful.

Guest Viola
Guest Viola
Posted
Tell him you are like a box of chocolates. He didn't know what he was getting originally but now he has something special and, wonderful.

Rusla, that is the absolute best quote of the week! We should all think of ourselves like that.

Thank you! :wub:

chick2ba Apprentice
chick2ba
Posted

Besides the ever-favorite constant nausea, dizzyness and painful 'old guy beer belly', I get super super cold for at least three days after a glutening. It's as if I have no way to retain heat (very annoying).

Btw.. It's so nice to talk to people who actually understand what I am going through. It gives me strength. Thanks.

key Contributor
key
Posted

Chelse,

I have described my stomach pain the same way. LIke my stomach is eating it self or something strange or glass going through my intestines. I think an antispasmodic would be something to have around.

Monica

penguin Community Regular
penguin
Posted
Chelse,

I have described my stomach pain the same way. LIke my stomach is eating it self or something strange or glass going through my intestines. I think an antispasmodic would be something to have around.

Monica

I praise the miracle of the antispasmodic! It doesn't get rid of everything, but it sure helps a lot!

Another annoying symptom...wierd rash thing on my lips. It's like my upper lip is constantly uber-chapped. It finally went away last week, and I had smooth lips for the first time in forever, then I got glutened Sunday and it came back. Dammit. <_<

I need to buy stock in carmex...

TCA Contributor
TCA
Posted

joint pain is mine. it's hard enough to chase 2 kids without feeling like you've been beaten with a sledge hammer! Ouch! :ph34r:

lonewolf Collaborator
lonewolf
Posted

Umm, Ummmm, it's ummm,... What was the question again? Oh yeah- most annoying symptom. It's that problem where you try to think of a word, you know, you're trying to think of the right word to say, what is that word that means you can't think of the right word? I think I have problems with word retrieval and brain fog the most - I used to think of myself as an intelligent person, but I think I've lost a few brain cells along the way. And losing them to gluten isn't nearly as fun as some other ways. Until I came on this board I never knew why I had times that I would space out and just not be able to think. I remember it happening during a couple of basketball games in college - couldn't remember what to do, felt like I was going to pass out on the court and having my coach bench me for a couple of games for playing so lousy. Those extreme episodes have come and gone many times over the years, have been much better in the past 10 years since going wheat-free and haven't had one since going fanatically gluten-free. Besides the brain fog, the worst is the sharp gas pains and cramps that keep me in "tuttle position" for hours at a time.

CMCM Rising Star
CMCM
Posted
Chelse,

I have described my stomach pain the same way. LIke my stomach is eating it self or something strange or glass going through my intestines. I think an antispasmodic would be something to have around.

Monica

I get such pain, it's like being knifed from inside or something. I got it a few years ago on a trip to Hawaii...I was in pain with it for a couple of days, and my poor hubby was out looking for all kinds of things to help it.....heartburn stuff was all I knew to get. And he had to buy me a hot water bottle too, but it didn't really help. For most of that trip I didn't feel like eating again....I was afraid to eat. I don't really know exactly what set that off, either. It didn't happen every time I ate gluten, and that's puzzling.

And oh yes...the brain fog. Where words are on the tip of my tongue but I just can't find that word...or remember things I should remember. Brain fog is a good term for it! :blink:

erin24 Explorer
erin24
Posted
  • Author
Tell him you are like a box of chocolates. He didn't know what he was getting originally but now he has something special and, wonderful.

Yes, I don't think my husband knew what he was getting (a 90 yr old in disguised as a 23 yr old) but I would hope that he would agree with the special and wonderful part.

Guest BERNESES
Guest BERNESES
Posted
Wow, like you I found my nausea/vomiting thing to be pretty unique as well!!

Have you had your genetics done? Wondering if there might be some link. Mine are DQ2,2 and DQ3,7

I had DQ6 and DQ8 tested. I have DQ8. Don't know about the others. interesting thought though.

I get such pain, it's like being knifed from inside or something. I got it a few years ago on a trip to Hawaii...I was in pain with it for a couple of days, and my poor hubby was out looking for all kinds of things to help it.....heartburn stuff was all I knew to get. And he had to buy me a hot water bottle too, but it didn't really help. For most of that trip I didn't feel like eating again....I was afraid to eat. I don't really know exactly what set that off, either. It didn't happen every time I ate gluten, and that's puzzling.

Have you ever had your gallbladder checked? The pain usually feels like extreme indigestion.

arc Newbie
arc
Posted

Gluten aggravates my hay fever. So the most annoying symptoms it the day or two of sneezing and constant nose running. The worst symptoms, though, is the migraines.

Hmmm, I just thought of something. I almost always have nausea with the migraines. I always assumed it came from the pain but now I wonder if gluten was causing both.

key Contributor
key
Posted

TCA,

Yeah, I am with you on the joint pain. Although mine is mainly in my legs and they ache and feel awefully fatigued after being gluttened. It is all I can do to get out of bed. Luckily it has been almost a month since I had that happen. My husband jokes that if I get gluttened that my legs go numb and I can't feel them. He hates it when I get gluttened too, because I am a wreck!

Monica

num1habsfan Rising Star
num1habsfan
Posted

Its a tie between the bloating, nausea, arthritis and diahhrea. They are all just as horrible for me, and never seen to go away :P.

~lisa~

mom2three Newbie
mom2three
Posted

BRAIN FOG

I am not gluten free (yet) and am currently dealing with Brain Fog big time. I HATE it and it puts such a damper on my life. It is as if I am not connected to the ground and I feel like I am not really mentally here. Like I am living my life in a dream like state. I feel like I am going to tip over but I never do. It feels like I am tipping backward on a chair and almost going to tip but just never do. I've been trying to figure it out for years and recently dicovered that I have some relatives with Celiac disease. I've just started my learning about Celiac and the brain fog thing is by far my biggest problem.

Ashley Enthusiast
Ashley
Posted

My are absolutely the nausea and the feeling I'm going to pass out. I get so weak I bearly feel conscience at times.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748
    Chels22
    Newest Member
    Chels22
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...