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

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

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.