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I Am / I Have __________


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17 replies to this topic

#1 zimmer

 
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Posted 15 March 2011 - 01:05 PM

This post may sound kind of trivial, but for some reason I feel the need to settle on a label for "this that has re-directed my path" through life.

How should I / how do you refer to your gluten problem?

Do you say (or think), "I have celiac disease" or "I am celiac" or "I am gluten intolerant"?

I have not had a biopsy, but positive tTG. From lots of reading, my understanding is that tTG is an autoimmune something-or-other (antibody?) produced in the small intestine that is a strong indicator (90-95%) of villi damage, i.e. "disease".

Do I have the "disease"? In the absence of a positive biopsy, am I more correctly "gluten intolerant"? I hate the word "disease", but if that's what it is, then so be it.

Although my symptoms are minimal, I have noticed some changes for the better after changing my diet. That, too, is part of the diagnosis.

Right now I just say that I can't eat gluten and that has been a sufficient explanation. But, for myself, I need to settle the question in my own head.

Thanks for any responses... and for all that I've learned reading posts!
  • 0
Positive tTG IgA Ab, Gliadin IgA & IgG
Decided against biopsy
gluten-free 2/14/11

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#2 jerseyangel

 
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Posted 15 March 2011 - 01:11 PM

I say I am gluten intolerant.
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#3 Lisa

 
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Posted 15 March 2011 - 01:15 PM

I say I am gluten intolerant.



Me too!

I really dislike it when people say "I am Celiac". I am a PERSON with Celiac Disease. Celiac does not define me. :D
  • 0
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#4 mushroom

 
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Posted 15 March 2011 - 01:18 PM

Another gluten intolerant here.
  • 0
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

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

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
Legume free March 2010
Now tolerant of lactose

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#5 Strawberry_Jam

 
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Posted 15 March 2011 - 01:48 PM

"I have Celiac disease." Then again, I had a positive biopsy and blood test.

still sinking in, to be honest... sometimes I say it over a couple times in my head before I believe it.
  • 0

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


#6 sa1937

 
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Posted 15 March 2011 - 01:57 PM

"I have Celiac disease." Then again, I had a positive biopsy and blood test.


I say the same thing.
  • 0
Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#7 ravenwoodglass

 
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Posted 15 March 2011 - 02:45 PM

I say I have celiac. If I get a blank look (which doesn't happen as much as it used to) I then will say I am gluten intolerant and can't have wheat, rye, barley or oats.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 love2travel

 
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Posted 15 March 2011 - 03:10 PM

The word "disease" bothers me, too, so I say "I have celiac" and then explain a little more if necessary. I do have celiac disease and it took awhile before I could say it without cringing. Like Lisa I do not allow it to define me because there is so much more to me than that. :D As I am asymptomatic, I have to keep reminding myself I truly do have it the odd time. :(
  • 0
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#9 Lisa

 
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Posted 15 March 2011 - 03:37 PM

The word "disease" bothers me, too, so I say "I have celiac" and then explain a little more if necessary. I do have celiac disease and it took awhile before I could say it without cringing. Like Lisa I do not allow it to define me because there is so much more to me than that. :D As I am asymptomatic, I have to keep reminding myself I truly do have it the odd time. :(


Oh yes, I agree with the "disease" part and I rather consider myself having a "disorder", but I have not analyzed that word too much. I would rather and have referred to it as as "pain in the ass". :rolleyes:

When dining, I usually say I have a gluten intolerance. When I get that "deer in the headlights stare", I go for "wheat makes me really sick".

THEN my husband chimes in... "Well, you know that if she gets the smallest bit of gluten in her meal, she'll be dead before she makes it out the door." Should they freak out, I calmly explain with a smile....and it does gain their attention when they have little experience, nor salary to care. B)

...sometimes it works....sometimes a little humor will help. But we always make it better by nights end.

EDIT: Only on rare occasions did we do this and never at the expense of uninformed staff. I STRONGLY believe that you need to be a good steward for those that come behind you....
  • 1
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#10 sa1937

 
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Posted 15 March 2011 - 03:43 PM

I would rather and have referred to it as as "pain in the ass". :rolleyes:


AMEN! So have I! :lol:
  • 0
Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#11 jerseyangel

 
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Posted 15 March 2011 - 04:05 PM

AMEN! So have I! :lol:

Yep--many times!! :P
  • 0
Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#12 Roda

 
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Posted 15 March 2011 - 08:24 PM

I usually say that I have celiac or celiac disease. If someone does not know what that is I tell them I can't eat anything with wheat, rye, barley and for me oats. My 6 year old son had a positve ttg but did not have a biopsy or a gi diagnosis but I still tell people the same thing for him. More than likely he has celiac anyway.
  • 0

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#13 Noomers

 
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Posted 16 March 2011 - 04:02 AM

I say 'I have celiac' (diagnosed by blood test) to help distinguish it from all the other intolerances/allergies in our family, which can be outgrown and I don't have to be hyper-diligent about avoiding. I've had to figure out food allergies in my kids by trial and error and I think some people assume I'm just making up their symptoms.
  • 0

#14 glutenfr3309

 
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Posted 16 March 2011 - 06:13 AM

This post may sound kind of trivial, but for some reason I feel the need to settle on a label for "this that has re-directed my path" through life.

How should I / how do you refer to your gluten problem?

Do you say (or think), "I have celiac disease" or "I am celiac" or "I am gluten intolerant"?

I have not had a biopsy, but positive tTG. From lots of reading, my understanding is that tTG is an autoimmune something-or-other (antibody?) produced in the small intestine that is a strong indicator (90-95%) of villi damage, i.e. "disease".

Do I have the "disease"? In the absence of a positive biopsy, am I more correctly "gluten intolerant"? I hate the word "disease", but if that's what it is, then so be it.

Although my symptoms are minimal, I have noticed some changes for the better after changing my diet. That, too, is part of the diagnosis.

Right now I just say that I can't eat gluten and that has been a sufficient explanation. But, for myself, I need to settle the question in my own head.

Thanks for any responses... and for all that I've learned reading posts!



i usually say i am gluten intolerant.
when i eat out in restaurants i say that i have a gluten allergy because i think if they hear the word 'allergy' they are more likely to take me seriously.
  • 0

#15 SaraKat

 
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Posted 16 March 2011 - 09:11 AM

I say I have celiac disease.
  • 0
Positive TTG IGA blood test 8/13/10
Endoscopy confirmed 8/31/10
Started gluten-free diet 9/1/10




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