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Should My Family Get Tested?


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10 replies to this topic

#1 chili

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Posted 21 March 2011 - 04:55 PM

I was diagnosed in January 2011, for Celiac..Should my family get tested as well? parents? siblings? I am beginning to think that my dad has it as well. he is experiencing the same type of symptoms and was just told by his doctor (which is the same as mine family doctor) that he is vitamin b12 deficient...now wouldn't he put 2 and 2 together and think maybe my dad has it too.. why are doctors so ignorant to this disease???

Also I have 3 small children. should I get them tested as well? the only one that concerns me is my 1 year old. I think he has milk protein allergy? what are your views?
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#2 Jungle

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Posted 21 March 2011 - 05:40 PM

The only reason I was diagnosed was because my brother and niece were. I got tested just to rule out Celiacs. Go figure. I have 3 kids also and will have them tested soon.
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#3 mushroom

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Posted 21 March 2011 - 05:46 PM

The general recommendation is that all first degree relatives be tested - parents, siblings, offspring. Somehow or other, doctors seems to think that we exist independent of what we put in our bodies and what happens when we put things in our bodies that we shouldn't. They somehow lack the neural synapses that connect these events with symptoms we experience. Yes, especially for that reason, your dad needs to be tested too. It might save him a lot of grief. And your 1-year-old could be lactose intolerant, not casein intolerant depending on what he's reacting to. He is a definite candidate for testing regardless of the familial relationship.
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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
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Citric acid free June 2009
Potato starch free July 2009
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#4 Strawberry_Jam

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Posted 21 March 2011 - 08:13 PM

I'm really trying to get my grandmother tested, as she's had IBS and fibromyalgia my entire life, along with chronic constipation and a whole host of other issues that could be gluten- and other intolerance-related.

My doctor told me that only those who have digestive problems and celiac symptoms should get tested...

but if insurance covers it and there's a chance that someone's a silent celiac, why not test 'em?
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gluten-free 25 Feb 2011
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22 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011

#5 MsCurious

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Posted 21 March 2011 - 10:32 PM

I'm really trying to get my grandmother tested, as she's had IBS and fibromyalgia my entire life, along with chronic constipation and a whole host of other issues that could be gluten- and other intolerance-related.

My doctor told me that only those who have digestive problems and celiac symptoms should get tested...

but if insurance covers it and there's a chance that someone's a silent celiac, why not test 'em?



Her symptoms don't sound very silent to me... IBS is miserable. I think lots of people that get diagnosed with fibromayalgia and IBS are really celiac, and don't have those two issues once they go gluten free. It seems since doctors didn't know a THING about celiac ten years and more ago.... they "tried" to put other illness labels on people who are just now being diagnosed and their "other illnesses" go away. Pretty compelling reason for her to get tested, I'd say! It IS genetic after all. ;)
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#6 T.H.

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Posted 22 March 2011 - 12:32 AM

...why are doctors so ignorant to this disease???

Also I have 3 small children. should I get them tested as well? the only one that concerns me is my 1 year old. I think he has milk protein allergy? what are your views?



I'd say oh yeah, get tested. my father was diagnosed 9 years ago. His doctor said 'eat gluten free' and that was the end of that. No follow ups, no more info, nada.

8 years down the line, as I"m getting sicker and sicker, I get tested only because I was getting an endoscopy for something completely different and knowing about the celiac disease, asked if they could 'take a look while they were down there.'

Then we tested everyone, and my daughter and brother came back positive. My son was negative, but I did with him what I would urge every celiac parent to do: tried a gluten free diet for a while, just to make sure it wasn't a false negative or he wasn't a non-celiac gluten intolerant.

Turns out, I chose correctly, as he has symptoms that resolve on a gluten-free diet. We challenged him and he reacted, so on the diet he stays.

My son had trouble with dairy early, early on, too. When he went off gluten, we found out that most of his dairy issues resolved (not all, though). It bothers me so much, because it suggests that he's had this for years and we never knew, never even though to check for it. :(
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#7 ravenwoodglass

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Posted 22 March 2011 - 04:28 AM

I'm really trying to get my grandmother tested, as she's had IBS and fibromyalgia my entire life, along with chronic constipation and a whole host of other issues that could be gluten- and other intolerance-related.

My doctor told me that only those who have digestive problems and celiac symptoms should get tested...

but if insurance covers it and there's a chance that someone's a silent celiac, why not test 'em?


Your doctor is flat out wrong. All first degree members need to be tested. Celiac is not just a gut disease although some doctors falsely think so. And your grandmother is far from asymptomatic.
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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)

#8 Cara in Boston

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Posted 22 March 2011 - 04:38 AM

It is my understanding that all first degree relatives should be screened no matter what. Screening should continue every two or three years as it can crop up at any time. Second degree relatives (aunts, uncles, cousins, etc.) should be told so they can get screened if they have any symptoms or unresolved medical issues.

I tested positive after my son tested positive. Even though it looks like it came from me, my husband will get screened too - his relatives all seem to have symptoms so I don't want him to think he is off the hook just because I came back positive.

Cara
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#9 keithceliac2010

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Posted 23 March 2011 - 04:45 PM

I am only 4 weeks gluten-free and have had a miraculous turn-around in my physical and mental symptoms. I am really on "Top of the World", after suffering for over 30 years with a myriad of symptoms of gluten intolerance. I have several family members(parents, aunts and uncles, cousins and siblings that have many of the same symptoms which I have dealt with for many years. My first instinct after discovering my diagnosis and feeling the symptoms vanish after going gluten-free, was of course to share it with my family members- most loving family members want whats best for the rest of the family and want them to feel better. You would think that I told them that aliens had abducted me and cured my illnesses. Lots of denial. Being a recovering alcoholic, I know what denial is, especially in my family. I have not had one family member that takes it seriously. All I can do is be a positive, living example, and let people see for themselves the positive changes that my body has gone through being gluten-free, and eating a healthier diet. My point is, that when it comes to your parents, siblings, and extended family members, yes talk openly about it but try not to get frustrated and/or disappointed if your warnings fall on deaf ears. Believe me, I had to take a step back from trying to heal my entire family, lest I increase my blood pressure and stress when they just don't see the whole picture. As far as your children, I cannot give any advice since I am so new to this and still in a learning phase myself. Best of luck, and take care of yourself and your children first and foremost.
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#10 chili

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Posted 24 March 2011 - 05:04 AM

I am only 4 weeks gluten-free and have had a miraculous turn-around in my physical and mental symptoms. I am really on "Top of the World", after suffering for over 30 years with a myriad of symptoms of gluten intolerance. I have several family members(parents, aunts and uncles, cousins and siblings that have many of the same symptoms which I have dealt with for many years. My first instinct after discovering my diagnosis and feeling the symptoms vanish after going gluten-free, was of course to share it with my family members- most loving family members want whats best for the rest of the family and want them to feel better. You would think that I told them that aliens had abducted me and cured my illnesses. Lots of denial. Being a recovering alcoholic, I know what denial is, especially in my family. I have not had one family member that takes it seriously. All I can do is be a positive, living example, and let people see for themselves the positive changes that my body has gone through being gluten-free, and eating a healthier diet. My point is, that when it comes to your parents, siblings, and extended family members, yes talk openly about it but try not to get frustrated and/or disappointed if your warnings fall on deaf ears. Believe me, I had to take a step back from trying to heal my entire family, lest I increase my blood pressure and stress when they just don't see the whole picture. As far as your children, I cannot give any advice since I am so new to this and still in a learning phase myself. Best of luck, and take care of yourself and your children first and foremost.

Thank you keith for your respond...I try not to get frustrated. I would love for some of my family members to get tested as they have some of the symptoms. Sometimes I get an ignorant response as " don't jinks me with what you have" it frustrates me, because I know this originated from someone, I find it impossible that I am the only one, yet diagnosed that has this disease. I think I will get my children tested eventually. All are triving and growing as should and there is no evidence of food intolerances. (except for my 1 year old, who may be allergic to milk.
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#11 ravenwoodglass

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Posted 24 March 2011 - 03:42 PM

I am only 4 weeks gluten-free and have had a miraculous turn-around in my physical and mental symptoms. I am really on "Top of the World", after suffering for over 30 years with a myriad of symptoms of gluten intolerance. I have several family members(parents, aunts and uncles, cousins and siblings that have many of the same symptoms which I have dealt with for many years. My first instinct after discovering my diagnosis and feeling the symptoms vanish after going gluten-free, was of course to share it with my family members- most loving family members want whats best for the rest of the family and want them to feel better. You would think that I told them that aliens had abducted me and cured my illnesses. Lots of denial. Being a recovering alcoholic, I know what denial is, especially in my family. I have not had one family member that takes it seriously. All I can do is be a positive, living example, and let people see for themselves the positive changes that my body has gone through being gluten-free, and eating a healthier diet. My point is, that when it comes to your parents, siblings, and extended family members, yes talk openly about it but try not to get frustrated and/or disappointed if your warnings fall on deaf ears. Believe me, I had to take a step back from trying to heal my entire family, lest I increase my blood pressure and stress when they just don't see the whole picture. As far as your children, I cannot give any advice since I am so new to this and still in a learning phase myself. Best of luck, and take care of yourself and your children first and foremost.


Glad to hear the diet is working so well for you and that you are overcoming your other issues. It is hard and you are to be commended for dealing with not just one but two difficult life changes. Don't lose heart with your family. It took six months but eventually my family realized that the diet was a life changer and finally all agreed to be tested. All were positive.
  • 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)


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