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

Carriefaith Enthusiast
Carriefaith
Posted

Well all of my symptoms are annoying, but the brain fog is probably the most annoying.

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

Celiac.com Sponsor (A8-M):


  • Replies 98
  • Created
  • Last Reply
elye Community Regular
elye
Posted

Okay, here's a weird one to make one pause...for me, the worst symptom of all this is the fact that I get no symptoms...I cannot tell if I've accidently been glutened, because nothing happens. The only symptom I had before I was diagnosed was low iron...that's it. I know you guys who suffer so terribly must be thinking, "Why the @!#!*!* are you complaining?" Well, you guys are highly motivated to be diligent and avoid gluten...less chance of horrible intestinal damage. Hell, I'd LIKE to know when I've consumed gluten unknowingly!........I think........

Guest Viola
Guest Viola
Posted

Bloating, brain fog and the shakes ... You'd think I was a recovering acoholic :o And did I mention bloating?

ianm Apprentice
ianm
Posted

Brain fog, Brain fog, Brain fog, Brain fog, Brain fog, Brain fog, Brain fog, Brain fog, Brain fog and brain fog. Oh yeah did I mention brain fog also?

Deej Newbie
Deej
Posted

You make me feel less alone. Thank you.

Brain fog is the thing I fear most - in my hyper-paced world I can't afford it.

The D is a nightmare. I'm scheduled in back-to-back meetings and this is a horrendous problem.

Exhaustion. I want to cry just typing the word. I am so so so tired.

The pain? I've been in pain my entire life so it barely registers with me anymore. I know it is there but it always is.

Ten years out and I must still be doing something wrong. :rolleyes:

key Contributor
key
Posted

The C that follows the D! Then the major fatigue!

Monica

Guest BERNESES
Guest BERNESES
Posted
For me the pain is close to unbearable (I'm a lucky micro sensitive person!), however the most annoying is the nausea and belching. Not the actual act of belching, but the most retched, foul, rotten smell and taste that comes with the belching, and lasts around 7 hours (which has actually triggered vomiting).

I'll take every other symptom of mine over that!

Oh my gosh- someone else actually has the nausea/vomiting thing too! That makes me feel better (misery loves company) but not a lot of people here say thyat they get nausea. I am a lucky micro-sensitive person too.

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

Celiac.com Sponsor (A8-M):


CMCM Rising Star
CMCM
Posted

I think for me the worst is the horrible burning pain I get sometimes (but not all the time!!). I'm in such pain all I can do for HOURS is lay down with a hot water bottle on my stomach area. I guess what's annoying is just the bloated, sick feeling followed sometimes by nausea and always by near D. And it's horrible if it hits later on when I'm not expecting it and if I'm out somewhere. I had a sudden attack (don't know from what) in the supermarket the other day and almost had to run to the bathroom. I was hoping the room wasn't occupied because I was about to lose it! Not fun, and definitely annoying. Oh yeah...also the brain fog hits and I hate that. :angry:

nikki-uk Enthusiast
nikki-uk
Posted

For my hubbie it's got to be

Brain fog

Irritability/Paranoia

Fatigue

That's not to say he doesn't worry about D though!

elonwy Enthusiast
elonwy
Posted

I'd have to agree.

1. Brain Fog - I fix complicated computer systems, and I just cannot function at work when my brain doesn't work.

2. Fatigue - I HATE that I want to take naps all the time, I was always so miss energy and Hey lets stay out til 4am.

3. Irritability - I do not like the unconscious change to "miss b"

4. Bloating. - Ewww.

Elonwy

lpellegr Collaborator
lpellegr
Posted
Okay, here's a weird one to make one pause...for me, the worst symptom of all this is the fact that I get no symptoms...I cannot tell if I've accidently been glutened, because nothing happens. The only symptom I had before I was diagnosed was low iron...that's it. I know you guys who suffer so terribly must be thinking, "Why the @!#!*!* are you complaining?" Well, you guys are highly motivated to be diligent and avoid gluten...less chance of horrible intestinal damage. Hell, I'd LIKE to know when I've consumed gluten unknowingly!........I think........

You have my sympathy and understanding - my symptoms (anemia that I wasn't even aware of without a blood test, the world's foulest and most abundant gas, occasional abdominal pain and occasional nighttime nausea, plus cold urticaria where my skin turned red and itchy when cold) have stopped thanks to the gluten-free diet, but I don't get them back immediately when I eat something contaminated, so I'm never sure where to place the blame. Was it something today? Yesterday? Days ago? I really sympathize with all the people on this forum with nasty immediate symptoms, but it's also hard convincing people you have to seriously stick to this crappy diet when you can't demonstrate to them that it will make you sick. You get a lot of "so what will happen if you eat it?" and feel stupid not having anything dramatic and sick-sounding to tell them. So I lie. Instead of telling them I'll have gas that would revolt a Hell's Angel in a few days I tell them something lurid like projectile vomiting right after dinner. And then I tell myself again, "Gluten will hurt you, gluten will hurt you, even if it's years down the line, gluten will hurt you." And remind myself how happy I am not to be stinky and itchy.

Guest BERNESES
Guest BERNESES
Posted
Okay, here's a weird one to make one pause...for me, the worst symptom of all this is the fact that I get no symptoms...I cannot tell if I've accidently been glutened, because nothing happens. The only symptom I had before I was diagnosed was low iron...that's it. I know you guys who suffer so terribly must be thinking, "Why the @!#!*!* are you complaining?" Well, you guys are highly motivated to be diligent and avoid gluten...less chance of horrible intestinal damage. Hell, I'd LIKE to know when I've consumed gluten unknowingly!........I think........

I think that makes total sense. A friend of mine has diabetes and she can adjust her insulin accotrding to what she eats so she rarely has a reaction even if she over does it. She said that in ssome ways, I'm lucky because my body gives me immediate feedback. Hers doesn't and she's worried that down the road she will suffer the really severe side effects of not taking care of her body. i think this diet would be much harder to stick to if my body didn't react at all. It wouldn't almost seem completely unbelievable to me.

debmidge Rising Star
debmidge
Posted

as per my husband:

Intestinal pain (when no chance of being glutened happened)

No energy

Residual depression (has been gluten-free for only 2.5 years now but celiac for 27 years - has a lot of catching up to do)

skoki-mom Explorer
skoki-mom
Posted

My most annoying symptom is that I have no symptoms. Now, most people would probably say my most annoying symptom is that I have turned into a paranoid annoying b***h that is no fun anymore.

Okay, here's a weird one to make one pause...for me, the worst symptom of all this is the fact that I get no symptoms...I cannot tell if I've accidently been glutened, because nothing happens. The only symptom I had before I was diagnosed was low iron...that's it. I know you guys who suffer so terribly must be thinking, "Why the @!#!*!* are you complaining?" Well, you guys are highly motivated to be diligent and avoid gluten...less chance of horrible intestinal damage. Hell, I'd LIKE to know when I've consumed gluten unknowingly!........I think........

Obviously I should have read the whole thread first. I don't even have low iron, though. I understand your post totally.

Guest Robbin
Guest Robbin
Posted
EXACTLY!

My face going numb and having the rest of my head on the ceiling is really annoying, especially at work. DH doesn't appreciate it either, my attention span goes from zero to negative...

The D is pretty annoying also, nothing like abandoning your cart a half hour into your wal-mart trip to ruin your day. And stinking up the place. Luckily Target has mini Oust air freshener so that I can do that public service of decontaminating the bathroom :ph34r: ...

OMg, I hate the D the worst, too. I know which stores in town have the best restrooms that are closest to the door. I get soooo embarrassed from the stink too and I once used most of my fav. perfume in a restroom at Disney World 'cause I stunk up the place. Just sprayed it all over the stall area, then some little kid walked in with their mom and said "Let's get out of here, it smells like poop and perfume!!!!" Geeez, I waited until they left to leave the stall, I was so embarrassed!! I now carry a little spray can of air freshener in my oversize purse (also extra, extra tissues in case of no t.p. :blink:

MallysMama Explorer
MallysMama
Posted
OMg, I hate the D the worst, too. I know which stores in town have the best restrooms that are closest to the door. I get soooo embarrassed from the stink too and I once used most of my fav. perfume in a restroom at Disney World 'cause I stunk up the place. Just sprayed it all over the stall area, then some little kid walked in with their mom and said "Let's get out of here, it smells like poop and perfume!!!!" Geeez, I waited until they left to leave the stall, I was so embarrassed!! I now carry a little spray can of air freshener in my oversize purse (also extra, extra tissues in case of no t.p. :blink:

I'm sorry Robbin....you might not have meant that to be funny - but I laughed so hard when I read your story at Disney World!!! :lol::lol::lol: Thank you for sharing - even though I'm sure it wasn't funny at the time. After reading all your public restroom stories - it makes sense why I, to this day, hate using public restrooms...must have been from all my bowel trouble growing up! (And I just now connected the two!) Dorothy in the Wizard of Oz says: "There's no place like home..." But we, as Celiacs, probably say: "There's no place like my own bathroom at home!!" :blink::D

Bonnie Explorer
Bonnie
Posted

BLOATING!! With a doubt, my worst and most annoying symptom.

I get bloated regardless of whether I'm feeling good or not. I wake up in the morning with a flat stomach and then as soon as I put food in my mouth it starts.

So I'm right with you Erin24! I am 5.7" and 115 to 121 pounds and most days look pregnant! Some days I get tempted to starve myself just to be flat!

Yvonne

erin24 Explorer
erin24
Posted
  • Author
BLOATING!! With a doubt, my worst and most annoying symptom.

I get bloated regardless of whether I'm feeling good or not. I wake up in the morning with a flat stomach and then as soon as I put food in my mouth it starts.

So I'm right with you Erin24! I am 5.7" and 115 to 121 pounds and most days look pregnant! Some days I get tempted to starve myself just to be flat!

Yvonne

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.

mmaccartney Explorer
mmaccartney
Posted
Oh my gosh- someone else actually has the nausea/vomiting thing too! That makes me feel better (misery loves company) but not a lot of people here say thyat they get nausea. I am a lucky micro-sensitive person too.

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

bluejeangirl Contributor
bluejeangirl
Posted

bloating for me also. I'm the same way in the morning my stomach is flat but depending on what I eat I'll bloat. I'm buying some spring and summer clothes and I'm so thankful this year the tees are longer, tunic tees. My stomach won't show anymore. :rolleyes: Oh and do any of you have the no butt problem so your have to pull up on your pants all the time.

I hate the spacey feeling where you can't recall anything. During those times I don't know anything. I feel like avoiding people.

Gail

Rusla Enthusiast
Rusla
Posted

They are all annoying. The pain nausea and profuse sweating is the worst, the D and bloating is second and the ugliest is the DH on my face that happens.

gfp Enthusiast
gfp
Posted

dvasj

Guest stef 4 dogs
Guest stef 4 dogs
Posted
In decending order of seriously affecting my life.

1. Brainfog

2. Brain fog

3. Brain-fog

99. D :P

I'd have to say the lack of control! When you gotta go YOU GOTTA GO! The D is intense. I sometimes feel like a stunt double, took a couple headers jumping over things to b line to the bathroom quick!. I sorta gave up on wearing things with zippers and buttons! HA

Stef 4 Dogs

Guest Robbin
Guest Robbin
Posted

MallysMama--You are right, there is no place like home--toilet! :) It was pretty funny, but not at the time! I forgot to mention, Yeah, the BRAIN FOG. My teenager thinks I am an idiot sometimes. It is kind of sad when he goes to ask me a homework question, and then changes his mind and says, well, maybe I should ask Dad. (I USED to be smart :blink: )

gfp Enthusiast
gfp
Posted
I'd have to say the lack of control! When you gotta go YOU GOTTA GO! The D is intense. I sometimes feel like a stunt double, took a couple headers jumping over things to b line to the bathroom quick!. I sorta gave up on wearing things with zippers and buttons! HA

Stef 4 Dogs

Last time i played about with my diet I had to take 3 metro's to get home....

I have to admit I spent a whole non-gluten-free weekend and then it hit me....

First one I managed a cafe, my gluten-free had to hang about while I spent half an hour and came out sweating like a pig, I don't know what they thought I ws injecting in there....

Then next line on the way I had to bail out found a bar and exploded .. another half hour....

Third one I happened to be next to a pub I knew... not so lucky and I had to remove my undies and stick them in the bin for ladies use.... and do the best I could with loo roll....

I have never been back to the pub, Id be to embarassed. but this doesn't even hit the radar as annoying symptom...

Migranes go well ahead, I used to have 1 a month and be so ill my eyes actaully bled. The apin has been so bad I have taken enough coedine to seriously damage a horse and not cared if it killed me... but this still doesn't hit the radar ....

When I have the worst brainfog I say things that have cost me friends, a marriage and a job!

Archived

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

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


  • Member Statistics

    • Total Members
      131,856
    • Most Online (within 30 mins)
      7,748
    Sonya Haskin
    Newest Member
    Sonya Haskin
    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

    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • 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.