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scotia

Adventures In Celiac World

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Guest mlwaller

My most memorable was about a month after being diagnosed. I had an early morning appt. with a dietician in another town, so I stayed with a friend overnight. She tried really hard to accomodate and we went for what I considered a "safe bet", steaks. Well, my consultation ended up taking about and hour and a half, as I spent at least 45 minutes running up and down the hallway to the bathroom, combating the problem from both ends! :blink:

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:lol: LOL, oh, that was just what i needed ! Glad to know I'm not alone

Just two weeks ago I was waiting in the checkout with a trolley full of groceries and of course, I started to break out in a sweat and knew I had to dash.

My daughter was with me and since this is not a rare occurence I bolted to the loo and left her to pay.

well lets just say things were worse than I anticipated and I was taking some time (and yes I do the double flush too!)

next thing i know my mobile phone goes off ( set on the loudest volume, with an inspiring piece of military music!)

and of course I can't find it quickly because 1) i'm otherwise occupied and 2) who can find anything in the bottoom of my handbag?

can you imagine how much a mobile phone echoes in a place like that?

anyway it was my daughter ringing to see where i was & if I was OK becauae I was taking longer than usual.

needless to say I waited even longer until I thought the coast was clear before leaving

cheers louie :)

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I was talking to a coworker today, and the chief engineer on her program saw us outside and came to say hello. He had tried to recruit me - heavily - after I worked on the winning proposal for the program, but I turned him down. Amongst the rest of the conversation, he noted "before meeting you, I never knew what gluten was!". At the least, it seems that my diet was memorable for him! :lol: (The 12-16 hour days, for months straight, certainly made the proposal experience memorable, even if I don't remember much of what *actually* went on!)


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I certainly spent years having those types of emergency moments (never had anyone to admit them to, as I am rather shy about things like this)...

Car over-heated once, in the middle of nowhere and actually had to use a bag--how disgusting and embarassing :(

I would laugh, but since I am dealing with a pretty bad reaction it would hurt. Bseides the fact that I would have one of those situations right now if I dared to get near a car:)

Liatt

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Well I am different than yall. Meaning I used to be always contipated and vomit....And to the fact Im not sure I want to talk about this on the internet :)

Anyway I used to be the constipation queen..... And had to go to the dr quite often to be cleaned out. Well, one time a few years ago I had been contstipated for a dangerously long time, from celiac and a surgery.....So I went to the dr-- he did his thing. I went.........ON the way home though the urge hit to go more......So hubby stopped at a wendys......Well lets say just the motion of sitting down made me explode..........All over the place :( lol the walls, etc........I had no idea what to do ........But wekks later my hubby said they closed down that wendys lol

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HA HA HA...you made me laugh with all your exploits.

I must admit, that since being diagnosed I've been 'ULTRA" careful and if I have any reservations about any ingredient I stay well clear of stuff.

Unbelievable as it may sound, some of the big restaurants I've been inthroughout my travels have been gluten-free 'clueless' and I've had to go through the 'speech' and show them my Celiac info card which I carry everywhere.

Anyway, one day I'd been driving for about 6 hours and going through a small town I decided I needed to eat something...

I went into a Mom n Pop diner...the waitress comes over..."What's it to be Hon?'

I asked her for a cheese omelette, hash browns and cooked tomatoes...I mentioned my gluten-free wheat allergy...and no bread, pepper, except peppercorns etc whatsover...

She came back about 5 times...asked me if I was OK with butter...OK with corn oil...OK with this, and that...she was truly an Angel.

And to top it off the cook came out and asked me how everything was, they seemed genuinely concerned that i didn't expire on their premises, and that everything was cooked just the way I liked.

The small town folk are the greatest.

True story...Downtown Vancouver (Big City...for those of you who think we run dog sleds into town up here...lol)

I was 'thrown out' of a chain restaurant one night...(well, I was a bit of a troublemaker obviously)...imagine!...asking for a cheese omellete...!!!

Couldn't I see they were busy!!!

That was what the girl at the counter said...

I asked (politely) to speak to the manager...as she 'clacked her gum, and walked away she said in that nasal whiny tone, that is so eveident among our young, ditzy, teenagers who are 'inconvenienced by our gall to come in and bother them by asking for something so exotic. (hint of sarcasm there...did you spot it???) ;-)

"He won't help you..." (Big smile on her face...you see she was right, and holding all the cards on planet Burgerville...)

Anyway she was right...sort of...the manager came up and said,

"What's your problem...? Totally confrontational..."We're busy, and we don't have time to cater to 'special orders..."

I said (again with just a hint of sarcasm)

"Oh, I'm sorry, I was under the mistaken impression that this was a restaurant..."

Much yelling coming from the guy in charge now...he'd be great in the event of an emergency!!!

My friends got involved and asked...

"Do you have a pot...?

A pan...?

eggs...?

The manager was now beet red and glowering at my large friends...he knew where this line of questioning was going.

My friend continued...

"

Cheese... tomatoes and hash browns...???

"Well, make him an omellete!!!"

This had become a huge deal for everyone copncerend...except me...I was just sitting quietly as the 'battle' raged on around me...hehe

I caught his attention in between him yelling at my friends, and asked for his name.

He said..."I can do better than that!!!" And he threw a business card at me, hitting me in the face...(is this guy just perfect for customer service or what?)

I stood up and we left with the guy yelling at us to "Get out! And don't ever come back...!!!"

Well, I left it for a couple of weeks and then phoned their HQ, and asked them to send me a copy of their customer service policy...

When the HR lady asked why I wanted that...strange request no doubt...I related the tale to her.

She was absolutely flabbergasted...and she said she'd investigate, gave mne her direct line etc, and said if you don't hear from me within 24 hours...call me...please.

I got a call the following day to say they were extremely sorry and I guess this wasn't the first complaint about this guy.

Anway, the upshot was...a gift certicate...a nice letter by way of apology and the knowledge that...

"By the way...you'll be happy to know that that particualr person, is no longer a part of our organization.

I guess someone must have called in to complain about my treatment at his hands.

You see, my friend produces a lot of big shows in town and uses (well used to) that place for ordering burgers for the roadies, crew etc...plus people were astounded that the guy lost it so easily...must have been a bad day at the office for him, but he shouldn't have messed with a Celiac!!! hehe

Bon Appettito.

Scotia

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Scotia,

What a cool story! I love it when people get what they deserve....... and this guy deserved his pink slip!!!!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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OMG! Ya'll are histerical. I'm still scared, but laughing at least.

I do have a ? though- do you guys still have the, uh, "Bathroom issues" now that you're gluten-free?


Mom to Kailyn (Gluten Free Toddler after celiac disease diagnosis) and Emma (lactose intolerant)

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Scotia--

That is a classic story. Sometimes its worth meeting a dealing with a 'jerk' just so you can tell the story later ! :P


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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OMG! Ya'll are histerical. I'm still scared, but laughing at least.

I do have a ? though- do you guys still have the, uh, "Bathroom issues" now that you're gluten-free?

Not nearly as much, very few in fact, since I went on a totally gluten-free diet.

I take very good care of myself diet-wise, so I won't get as sick as I used to be.

Now, that was very tiring, painful, nauseating, and worrysome, to say the least.

Funny enough, I don't 'visit' the bathroom, every day...every 4 or 5 days more like...I tend to drink quite a bit of water, so that probably helps, but it's better than the alternative...being deathly sick and low on energy all the time.

gluten-free is definately the only way to go.

I realise that some people might think we're getting a little 'close to the bone' with some of our 'revelations' or 'comments' but hey, if you're dealing with issues which the population don't have to...why 'sugar coat' it?

We are dealing with this in a humourous yet dignified manner, in my humble opinion.

The postings are to try and help anyone who has questions about the more difficult aspects of celiac disease.

There...soap box stowed safely away ;-)

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Thank you all so much for sharing those stories! Its good to know that I'm not alone in this. That's happened to me many times. I was in a restaurant once when I had to get up to the bathroom seven times in a row. I was with a good friend. After that I knew I would start throwing up so I apologized and had to drive home. The windows were all the way open to get some air and I just made it home before the vomiting started! Its really hard to concentrate on driving safely when all you want to do is throw up. :blink:

I have also left many parties early because of this. It doesn't seem funny at the time though. Hopefully those experiences are behind me, now that I am gluten and dairy free.

Sincerely,

June :D

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I try to spread the word when I go out to eat (when I am not with celiac hubby like out w/co workers during lunch or alone). I give the waitress/waiter a CSA pamphlet and tell her that celiac disease exists; ask her/him if they've ever gotten a customer to ask for gluten-free meal or at least ask that nothing have wheat in it? Some say yes, some say no. I talk enthusiastically about the gluten-free diet and try to interact with the waitperson and make them feel like knowing about celiac and servicing a celiac will make them more knowledgable about their jobs, etc. On time I didn't have a brochure handy and the waitress asked if I could come back to the diner with one. I brought one to her the next Sunday with other info about celiac disease, in a brown envelope and she was so appreciative.

In a less than happier situation, I wrote a letter to the local "diner organization" and enclosed the same pamphlet and told the president of this org about celiac disease and how the diners in the area could better serve a celiac disease person and I got no response (that's been since April 05). I wrote the same type of letter w/pamphlet to our favorite restaurant where we vacation here in NJ and since April no response. Since we are not vacationing this summer, I am not going to follow up until maybe early 2006. I don't want to be a pest about it.

Oh well. Keep trying.


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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Guest kmmolina
Yep, when I was at work, I learned to flush twice - first as soon as I started going, then at the end after I had wiped.  That way, I found the smell didn't really have a chance to "circulate"......  kinda went straight down the tube!!!!!

Karen

<{POST_SNAPBACK}>

These posting are making me LOL. I, like some of you others, have not shared these things, even with my husband. Your comment on the bathroom reminds me of our public bathroom at work. It is so embarrassing to be "sitting" next to you co-worker. I have also down the "several flushes" method. I also take one long roll of TP and then break it up, so that the sound of roll the paper several times doesn echo in the bathroom. As gross as this may be...it is great to not feel alone. I have even stared carrying Pier 1 Air Freshner in my purse so that I leave it fresher and then I walk across the room and use the sink that wasn't the closed to the toilet I used. Goofy..

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Kathleen, your post made me chuckle - I use same methods but I am lactose intolerant and sometimes don't watch my diet (my hubby is celiac). There's an expensive mall by me, Short Hills Mall, and their ladies room has "cubicles" instead of bathroom stalls. Each lady has her own "space" fully walled in once she closes the door. Unfortunately, that mall is too expensive to shop at so I don't visit it perhaps more than once a year....


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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