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erin24

What Is Your Most Annoying Symptom?

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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........


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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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?


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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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:

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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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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:


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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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!


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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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


Positive Bloodwork 7/8/05

Inconclusive Biopsy 7/20/05

gluten-free since 7/23/05

Never felt better.

"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"

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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.


Lee

I never liked bread anyway.....

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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.

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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)


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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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.


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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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:

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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


Diagnosed by biopsy with Celiac at age 1 in 1984.

No other health problems.

Hubby - no health problems.

Mallory (2 year old daughter) - no known health problems at this time.

Hannah (born 04/02/07) - no problems yet!

Family - no one diagnosed with Celiac - ever - to our knowledge. (Lucky me!)

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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

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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.

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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


Michael J. MacCartney

gluten-free 2005-June-24 Dairy free 2005-July-26

gluten / casein intolerant

HLA-DQ 2,3 (Subtype 2,7)

Diagnosed Celiac 2006-April-24

Father of:

Michael II HLA-DQ 2,1 (Subtype 2,6) - Allergic to Peanuts, tree nuts, eggs, and milk

William HLA-DQ 2,1 (Subtype 2,5) - Allergy free

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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


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

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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.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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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

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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: )

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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!


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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