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The Most Annoying Thing About Celiac Is...


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59 replies to this topic

#1 GFreeMO

 
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Posted 17 November 2011 - 01:00 PM

The most annoying thing about celiac is...

Being glutened and having NO CLUE as to what zapped me this time!
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#2 Strawberry_Jam

 
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Posted 17 November 2011 - 01:25 PM

never reaching a point where you feel good enough to start testing any foods, or know what your "glutened" symptoms are :(
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gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011


#3 mushroom

 
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Posted 17 November 2011 - 01:30 PM

The extra planning that eating takes :rolleyes:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
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#4 thegirlsmom

 
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Posted 17 November 2011 - 01:32 PM

Not having accurate testing for your kids.
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#5 captaincrab55

 
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Posted 17 November 2011 - 01:53 PM

Knowing that my Mom was never Diagnosed with Celiac...
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I'm a New Man Without GLUTEN!

#6 Diane-in-FL

 
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Posted 17 November 2011 - 02:02 PM

Finally living in a place with lots of fabulous restaurants and not being able to eat at most of them. :(
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#7 samie

 
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Posted 17 November 2011 - 02:03 PM

Always having to find out what we can eat at restarants
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#8 saintmaybe

 
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Posted 17 November 2011 - 02:03 PM

The absolutely astounding lack of knowledge and coordination among practitioners in the medical community.
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#9 DonnaMM

 
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Posted 17 November 2011 - 02:08 PM

Feeling like the whole world is against me
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Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

#10 beebs

 
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Posted 17 November 2011 - 02:18 PM

Getting a diagnosis. All my specialists, my kids GI (who is a world renowned celiac specialist) and my GP all agree that I couldn't not have celiac, but because of the stupid rules on diag here I can't be diagnosed!! I hate that, drives me insane. Because when I'm in hospital and stuff its all like "I need gluten free" blah blah "haven't got an official diag...blah blah" and then their faces glaze over and they get that look in their eyes like a "we are dealing with one of *them* " looks and then I have to worry about wether they are going to take my gluten-free request seriously and am scared to eat the whole time. Arrrghhhh!
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HLA DQ8, gluten-free since January 2011

#11 pricklypear1971

 
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Posted 17 November 2011 - 02:38 PM

Getting a diagnosis. All my specialists, my kids GI (who is a world renowned celiac specialist) and my GP all agree that I couldn't not have celiac, but because of the stupid rules on diag here I can't be diagnosed!! I hate that, drives me insane. Because when I'm in hospital and stuff its all like "I need gluten free" blah blah "haven't got an official diag...blah blah" and then their faces glaze over and they get that look in their eyes like a "we are dealing with one of *them* " looks and then I have to worry about wether they are going to take my gluten-free request seriously and am scared to eat the whole time. Arrrghhhh!


Ever considered lyIng at the hospital? I would. Geez, that's a lot of stress.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#12 beebs

 
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Posted 17 November 2011 - 02:46 PM

Ever considered lyIng at the hospital? I would. Geez, that's a lot of stress.



I have a really bad affliction, I can't lie...or even fib ever, my mother thought it was the best thing ever when I was a teenager - she knew about everything at all times!!
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HLA DQ8, gluten-free since January 2011

#13 Chad Sines

 
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Posted 17 November 2011 - 04:14 PM

That you cannot eat gluten...c'mon...this was obvious. :)
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#14 Gfreeatx

 
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Posted 17 November 2011 - 04:21 PM

Chad, your last comment made me chuckle. :) For me, it is the lack of spontaneity. I am a real foodie and I miss walking through the city I live in exploring new restaurants without having a care.
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#15 pricklypear1971

 
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Posted 17 November 2011 - 04:30 PM

I have a really bad affliction, I can't lie...or even fib ever, my mother thought it was the best thing ever when I was a teenager - she knew about everything at all times!!


Hon, you're never too old to learn :).
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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