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What Is Your Most Annoying Symptom?


erin24

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Carriefaith Enthusiast

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


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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.


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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!

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    • trents
      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
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      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
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      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
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      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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