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

Recommended Posts

Carriefaith Enthusiast

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

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

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

ianm Apprentice

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

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

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

Monica

Guest BERNESES
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

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

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

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
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
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

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

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
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
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

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
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
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

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

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

dvasj

Guest stef 4 dogs
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

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
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.

  • 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 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • 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):
  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      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
      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
      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
×
×
  • 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.