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JerryK

Now I'm Excited!

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So I don't see my younger brother as much as my twin, but we correspond via e-mail quite a bit.

The other day I mentioned..BTW, Garry and I have learned we are seriously Gluten Intolerant.

Tests seem to indicate it's not Celiac, but the Gluten Intolerance symptoms can be pretty awful.

I told him since he likely carries some of the same DNA as us, he might want to be on the lookout

for symptoms. I didn't know if he was having symptoms, who (besides us) talks openly about their bathroom habits.... :lol:

Today he called me and said "I wanted to thank you". I was very puzzled and asked him for what??

He says "for telling me about Gluten Intolerance". I haven't had any wheat for three days and my stomach is much better." Turns out HE had been having serious symptoms too and had no idea.

So it would seem that I (with the help from you guys) have made the discovery that I come from a long line of Gluten Intolerant relatives

and NO ONE KNEW. My dad had it seriously bad...he definitely had a problem, but no one ever figured it out.

I am now quite amazed. j


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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That's wonderful!

My family still has their head in the sand about the whole thing. Tons of stomach issues, but gluten can't be the cause :blink: ... I'm the family hypochondriac! ;)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Nice one!

The thread title sounded a bit funny like your glad your brother has it but I see what you mean now :D


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Now maybe you can use sibling peer pressure to convince your twin to try going gluten free.

Ya, after I looked at the title, I realized it looked silly.

I am excited because -- this is more evidence to convince the twin to go gluten-free.....


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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My younger brother has Celiac, too. It was his diagnosis that got me to thinking and testing for my Celiac.

At least we don't have to worry about food issues when we are visiting one another. Also, this summer we are taking an Alaskan Cruise together and I am comforted in the knowledge that I don't have to worry about the whole food thing aboard the ship by myself.

Best of luck to All,

Cleveland Bob B)


"Dreams Are What The Future Is Made Of"

Endoscopy & Blood Work Positive.....

gluten-free Since December 2004.....

Soy Intolerant August 2007......

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That's wonderful!

My family still has their head in the sand about the whole thing. Tons of stomach issues, but gluten can't be the cause :blink: ... I'm the family hypochondriac! ;)

It's not so much that my siblings treat me like a hypochondriac but rather like I'm adopted. My genes couldn's possibly be the same as thiers :blink: I'm the youngest so I know they all saw me come home from the hospital after Mom's C-section. HELLO. I have one sister who is lactose intolerance, another sister with a history of infertiity miscarriages and other autoimmune issues and a brother with arthiritis. But none of that could possibly be related to Celiac disease or gluten intoelrance - NAHHH. It's just me. I'm odd. I got all the bad genes. What is it people are afraid of anyway? Not being able to eat bread? What a small trade off. No bread but you get to live a longer healthier life. I don't understand.

violet


"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."

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My younger brother has Celiac, too. It was his diagnosis that got me to thinking and testing for my Celiac.

At least we don't have to worry about food issues when we are visiting one another. Also, this summer we are taking an Alaskan Cruise together and I am comforted in the knowledge that I don't have to worry about the whole food thing aboard the ship by myself.

Best of luck to All,

Cleveland Bob B)

My parents just returned from an Alaskan cruise and Mom said they had an awesome gluten-free menu. She even went and talked to the chef and kitchen staff and was assured no CC issues either...hope this means she's sending me on a cruise :lol: L.A.


Best RX? Ice Cream!

Positive Blood Test 2000

Negative Biopsy 2000

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It's purely amazing how resistant people are to information. The bottom line is no one wants to give up wheat.....everyone is a wheat addict...really! They find it hard to believe because wheat is in everything, bread is advertised as such an important part of our diet, look at the food pyramid!

My mom has celiac disease, and I have 3 siblings. I got diagnosed, and tried to "inform" my brothers and sister, but nah, they didn't have symptoms, no way. Then I convinced my mom to get gene tested, and she came up with TWO celiac genes, which means it is 100% definite that each of her 4 children has a celiac gene. Still a lack of belief about it.....I think they would have to get really sick (like my mom did) to take it seriously. Still, both of my brothers got prostate cancer at the VERY early age of 53....and there is a strong connection with celiac disease and prostate cancer. I can't convince anyone of anything! :(


CAROLE

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

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Nothing like family togetherness, huh? ;) My younger sister and our father are celiac too. My brother refuses to believe there is anything wrong with us. He thinks a good bowl of barley soup would make us healthy. :o

I have 5 kids and most of them have symptoms. I finally convinced 2 of them to be tested. Mike was finally given a blood test, which came back negative of course, after the first doctor told him he doesn't look like a celiac. Do we have 3 heads, or something?????? :blink: The 2nd son was told, "It isn't necessary to test you at this time!" What kind of a response is that???? :angry: My daughter is even sure she has it, yet she doesn't want to deal with it. Until she is ready to deal, then nothing can be done. I can talk until I am blue in the face, but she has to decide.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Dear JerryK,

We are so happy for you! Your younger bro probably was afraid to say anything until you mentioned it. This disease is a problem. Genetically, if one sibling has it, you have a 40 percent higher risk of Celiac. I know my Mom and brother have it, and I am not so sure my father does not have it either.

Dear Violet,

My family is stubborn and treats me like that, too. Of course, I am still waiting for the great news that I am really adopted and some great family who accepts and understands me wants me back now. :P I could swear I am not genetically related to any of these insane, close-minded, idiots. Whenever people treat me like I am strange when I am with my family, I tell them "You think I am weird? I AM the normal one!"

Dear CarlaB,

It is the same with my family. To them, I am just crazy. They do not get it, nor do they care to. People suck. I do not need a family if that is how they are going to be. The only reason I stay here is because I am stuck. One day, I will prove everyone wrong about everything. When I am rich, well, and happy it will be like "Mom who?" :P

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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that's funny right there...

I wish that my family was more receptive to exploring the possibility that their tummy issues just might be gluten intolerance. My daddy is already on the gluten free diet with me and my daughter, but my mom (who also has very severe symptoms and comes from a long line of people with tummy troubles) refuses to change her diet. She has acknowledged that she "might" be gluten intolerant, and she's very supportive of me and my daughter and attempts to make us incredible gluten free meals... she just won't admit that her gas and consitpation/IBS issues just might be Celiac. My sister and her kids all have symptoms as well, poor things. My niece seems to avoid all the obvious gluten foods (she's 3) and has been labeled as a "picky eater" when she eats the not obvious gluten things, she breaks out in rashes. My nephew eats whatever you put in front of him and then has diarrhea within minutes... usually doesn't finish a meal before he's in the bathroom. Sister has constant diarrhea and gas and refuses to consider gluten as the culprit. I'm just the family hypochondriac and therefore shouldn't be taken seriously.

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I am having an hard time with my mom to. She totally is here for me. But when i tell her she needs to stop eating gluten, she tells me i am 54 yrs old and i dont want to stop eating what i eat. I know i have problems with dairy and other foods, but im not changing the way i eat now. She also has severe joint pain, but she thinks it is all from her back injury years ago. I keep telling her to just try it for an week, to make me happy. But she wont listen. She even told my uncle to look up celiac on the puter, he was just diagnosed with stomach cancer a couple months ago at age 39, and he called her back and said heck no then i cant eat anything. It is so frustrating to see how my family needs to go gluten free cause i see their health issues, but they are so stubborn and love food.

I guess i should be at least thankful that they support me, but i wish they would follow suit.

paula


gluten, casein and soy free

on low carb/low sugar diet

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Dear JerryK,

We are so happy for you! Your younger bro probably was afraid to say anything until you mentioned it. This disease is a problem. Genetically, if one sibling has it, you have a 40 percent higher risk of Celiac. I know my Mom and brother have it, and I am not so sure my father does not have it either.

Most people, especially guys aren't going to talk about their bathroom habits. "Hey dude, how was your poo today" :lol: Can you imagine this discussion on league night at the bowling alley??

This fact in itself is what keeps Celiac/Gluten Intolerance from being more widely recognized.

This is aside from the fact that I'm NOT CELIAC, according to the genetic tests, so therefore my brothers likely aren't either...we are JUST sensitive. According to medical science we are not ill? :rolleyes: Many people treat their doctor as an all knowing God, who cannot possibly be

wrong. If someone's doctor doesn't take Gluten Intolerance seriously, the patient will not either, till they get sick enough...j


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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Most people, especially guys aren't going to talk about their bathroom habits. "Hey dude, how was your poo today" :lol: Can you imagine this discussion on league night at the bowling alley??

Now here I have to disagree Jerry. I have known a plethoraof men, including my friggin father, who wll discuss the frequency, texture, and smell of their bowel movements with an unreasonable amount of glee. Maybe there's just something in the water in CT......


If you're going through hell, keep going. ~Winston Churchill

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Now here I have to disagree Jerry. I have known a plethoraof men, including my friggin father, who wll discuss the frequency, texture, and smell of their bowel movements with an unreasonable amount of glee. Maybe there's just something in the water in CT......

Well, some of them may brag and be proud, but I bet you don't hear many say "Gee Dave, I'm worried you may have Gluten Intolerance because of the way you just stunk up the restroom".

To men being stinky denotes manliness :lol: except for me of course.


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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....and there is a strong connection with celiac disease and prostate cancer. I can't convince anyone of anything! :(

My dad's just been diagnosed with prostate cancer AND diabetes. I did a search, and couldn't find ANYTHING connecting celiac and prostate cancer. :ph34r: Do you have any links?

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My dad's just been diagnosed with prostate cancer AND diabetes. I did a search, and couldn't find ANYTHING connecting celiac and prostate cancer. :ph34r: Do you have any links?

Sorry to hear that. My dad had prostate cancer, too. If found early, it's very treatable. Dad's doing fine now, it's mostly just a big shock to hear the "c" word.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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My dad had prostate cancer, too.

He had surgery to remove the prostate gland over 10 years ago, and is doing fine. :)

I'd also be interested to see the lin between that and diabetes.


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

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Well in the end I guess most of us have families who absolutely refuse to acknowledge that ANY of them may have issues like celiac or gluten intolerance. I have both genes--one from each parent, of course. When I casually mentioned to my mother my symptoms, she started to laugh--because she has every single one of them too! But, when I suggested she get tested, she said, "Well, maybe we'll have your father tested, but I don't need to". I think she's too worried that the tests might actually show something and she might actually have to change her lifestyle. Well, when they're here they'll be eating gluten free. Maybe she'll feel better and finally will get a clue.

So then there's my niece who is 11 and is shorter than my 7 yo. She has been on prescription acid reflux medication for about 4 months because she had stomach aches every day--bad enough to keep her home from school for days at a time. They keep testing her for growth hormone deficiencies and she's coming up normal. Her diet consists of pasta and bread. HELLO???? How tough is it to order the blood test for celiac?? We know it runs in the family...I just don't get why they keep burying their heads in the sand. Maybe when they finally realize what a difference it's made taking my kids off gluten--the tummy aches have stopped, the diarrhea has stopped, the energy level has increased, etc., etc., etc.

AAARRRRGGGGGHHHHH! :o


Dx'd with lymphocytic colitis 1/07

Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8

Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy

gluten-free 3/7/07

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Dear JerryK,

ROFLMAO! :lol: I see what you mean. Guys do bathroom jokes, but that is the only way they talk about that stuff most of the time. You gave me an idea: a sample conversation between two guys at the bowling alley about Gluten Intolerance and Celiac:

Bob: *fart*

Joe: Dude! What're you, Celiac or something?

Bob: What?

Joe: That fart was all oozy.

Bob: Oozy?

Joe: Yeah, it sounded like you need some liquid cork.

Bob: Liquid cork?

Joe: Here *gets out the bottle* it is to stop diarrhea and stomach trouble.

Bob: *takes a sip* MMM. Tastes like chicken!

Announcer: Liquid Cork! For the Celiac in denial. If you won't join'em, cork it! :lol:

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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Now here I have to disagree Jerry. I have known a plethoraof men, including my friggin father, who wll discuss the frequency, texture, and smell of their bowel movements with an unreasonable amount of glee. Maybe there's just something in the water in CT......

Just an observation that maybe older men talk about poo more than younger men...


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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I was diagnosed with Celiac 2 years ago. My brother has had it for several years. When I asked him what kind of symptoms he was having that made him go to the doctor, he said "I had stinky gas". I thought to myself - don't all guys have stinky gas? :D


Diagnosed with Celiac Disease April 2005

Diabetic

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Announcer: Liquid Cork! For the Celiac in denial. If you won't join'em, cork it! :lol:

Too good. I think a commercial is in order. :lol:


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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