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How Many Family Members Have Celiac?


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24 replies to this topic

#1 shezatrip

 
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Posted 04 January 2011 - 12:42 PM

I would like to know how many in your family or extended family have Celiac?
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#2 gary'sgirl

 
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Posted 04 January 2011 - 01:12 PM

I would like to know how many in your family or extended family have Celiac?


I just left a message in your other thread, but incase you don't see it:

All three of my children have Celiac. Both my parents and I along with one of my three sisters also have Celiac.
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#3 ravenwoodglass

 
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Posted 04 January 2011 - 02:10 PM

All of them.
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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)

#4 India

 
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Posted 04 January 2011 - 02:30 PM

No-one in my immediate family seems to have coeliac disease but my dad found out recently that two relatives on his side of the family do have it. He was tested rather reluctantly, so I hope now he realises I wasn't just being over-dramatic!
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Self diagnosed but confirmed by biopsy
Gluten free Jan 2010
MSG free Jan 2010
Corn free Apr 2010
Soy free Jun 2010
Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

#5 Roda

 
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Posted 04 January 2011 - 02:40 PM

My youngest son (6yrs) and I have celiac. I have two third cousins on my dad's side who are confirmed celiac. I am suspicious of my father, brother and my dad's brother.
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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.


#6 MelindaLee

 
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Posted 04 January 2011 - 06:14 PM

I am the only confirmed, however my son has been gluten-free for the last 2-3 years and won't go back. My sister is in the process of being tested but has noticed when she avoids gluten she feels better. I fear she will get a false negative because she has avoided so much for so long. I am certain my mother is probably as well, but she is in denial, though supportive of me.
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#7 ElseB

 
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Posted 04 January 2011 - 06:18 PM

Just me. My sister has Crohn's Disease and refuses to get tested for Celiac. My parents were both tested after I was diagnosed but were negative. My dad likes to think that because he tested negative that it couldn't possibly have come from his side of the family. But the thing is, we know everyone on my mom's side and none of them have it. But my dad doesn't know any of his extended family so its possible one or some of them are celiac!
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#8 Emilushka

 
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Posted 04 January 2011 - 06:40 PM

I'm the only one. My sister has been diagnosed IBS but doesn't think she has Celiac and doesn't want to get blood testing done while she's still eating gluten or go gluten-free. She's happy and quite healthy, so for now I'm not arguing.
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#9 cassP

 
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Posted 05 January 2011 - 06:04 AM

OY- most of them will not get tested :angry: :angry: :angry:

i have 2 DQ8s- one from both mom and dad. i 100% believe my Dad has it- and he wont get tested :(((((( he's had psoriasis for YEARS & anxiety. both his parents ended up with dementia- and i dont want my dad to :(
Mom's got Hashimoto's and is at least Gluten Sensitive.

Sister is gluten free, and brothers are wheat free.

my aunt's docs dx her with "Crohns" & "Colitis" but never tested her for Celiac- and i asked her to, but she doesnt get it. My cousin has wheat & dairy allergies & gets seizures from aspartame- her doc wants to test her for Celiac but i told her the tests will be innaccurate if she's not eating gluten.

my Dad's Aunt died from stomach cancer. and my mom's side of the fam has thyroid issues and early heart disease.

this is why im so upset with our medical system
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#10 SaraKat

 
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Posted 05 January 2011 - 06:28 AM

Just me so far. My Dad was tested and negative and my mom and sister are going to get tested. They don't have any symptoms/other health issues though so unless it is silent celiac I am sure they are negative.
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Positive TTG IGA blood test 8/13/10
Endoscopy confirmed 8/31/10
Started gluten-free diet 9/1/10

#11 cap6

 
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Posted 05 January 2011 - 08:03 PM

Just me. I believe my mom had it as she had all of the symptoms
diarrhea/constipation
bloating
tummy pain
fibromyalgia
diabetes
what we now believe was dermatitis herpetiformis
IBS
easy bruising
canker sores
restless leg

Untreated, her body failed when she was only 77. My sorrow is now that I wasn't diagnosed sooner that maybe it might have helped her.
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#12 cassP

 
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Posted 06 January 2011 - 07:35 AM

Just me. I believe my mom had it as she had all of the symptoms
diarrhea/constipation
bloating
tummy pain
fibromyalgia
diabetes
what we now believe was dermatitis herpetiformis
IBS
easy bruising
canker sores
restless leg

Untreated, her body failed when she was only 77. My sorrow is now that I wasn't diagnosed sooner that maybe it might have helped her.

im sorry and share your frustration
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#13 Googles

 
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Posted 06 January 2011 - 11:21 AM

I'm the only one who has been tested. Though I have told the others they should be. My brother and maternal uncle have crhones (sp). And there are other digestive problems in my father's family. I think my mom might have it. I can't force them to get tested as it is their own health.
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#14 polarbearscooby

 
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Posted 06 January 2011 - 12:51 PM

Me and a 3rd cousin so far, I'm sure my Grandma has it, and my sister probably does...Who knows how many others...
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#15 precious831

 
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Posted 06 January 2011 - 08:02 PM

My daughter and I have it, we seem to be both having issue with all grains so we're actually grain-free. My mother has GI symptoms too, possibly the same thing but she doesn't want to skip gluten/grains.
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen




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