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

  • 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. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

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

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    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

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.