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#31 ravenwoodglass

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Posted 15 July 2007 - 02:06 PM

Doll- this is hysterical, because we oppose them they just jump to the conclusion that we're the same person on different names with nothing more to do than say the opposite of them. WE too are entitled to opinions, but apparently housewives know more than people who write for national celaic mags and doctors. LOL.
i bet a million bucks they'll try to kick me off the board now. anyone who disagrees mysteriously "leaves"




Everyone is entitled to their own opinions, but please do not make the assumption that the people whose opinions differ from yours are 'housewives' (the inference is obvious that you think that means uneducated). There are many on the board with substantial education and degrees. They may however choose to keep that to themselves.

Most of us come here for support and information. With Celiac there are so many variables that relatively little is really known for sure about, some GI doctors do not even know that Celiac can impact neuro function and many will admit that testing is at this point hit or miss. Most of us freely acknowledge that there is a great degree of difference between one and another of us as to the systems impacted and the severity of symptoms. Info that you may find worthless for your circumstance may be the difference between incomplete and complete recovery for someone else.

All opinions are welcome, but they do need to be given with respect for others.
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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)

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#32 AndreaB

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Posted 15 July 2007 - 03:54 PM

All opinions are welcome, but they do need to be given with respect for others.

This is completely true..........board rule #1 basically.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#33 lfij

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Posted 15 July 2007 - 03:58 PM

This is completely true..........board rule #1 basically.

i will try and be more "respectful" in the future, however, it does seem that any opinion other than the obsessive over being sick gets shot down. i suppose it's true that many support groups are self serving. thanks for the gentle warning.
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gluten-free since april 05
for the love of gluten-free rice krispies, can we all as a group realize that "celiacs" only refers to a group of people with celiac disease. it is not "celiacs or celiac's disease". it drives me nutso!

#34 Karen B.

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Posted 15 July 2007 - 04:21 PM

Doll- this is hysterical, because we oppose them they just jump to the conclusion that we're the same person on different names with nothing more to do than say the opposite of them. WE too are entitled to opinions, but apparently housewives know more than people who write for national celaic mags and doctors. LOL.
i bet a million bucks they'll try to kick me off the board now. anyone who disagrees mysteriously "leaves"

I would respectfully suggest that if you think the problem is about what people do for a living or level of knowledge instead of the tone being used in posting, you are missing the point. You may have greater knowledge of Celiac Disease but I have greater knowledge of my body.

I now am a biopsy diagnosed Celiac. I probably was when I was sick as a child but the level of testing was not sophisticated enough to catch it back then. In another 30 years, we will probably have more answers for the people left behind by the current level of knowledge. My sister has a wheat allergy and can not eat enough gluten to test positive on a blood test or biopsy. This does not mean she does not have Celiac, it means she doesn't test positive within the limitations of the tests we have now. Who knows what she will test as in 10 years?

I see no reason to exclude people because of the limitations of our current knowledge.
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Karen B.

diagnosed with Celiac Nov. 2003

#35 AndreaB

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Posted 15 July 2007 - 04:44 PM

however, it does seem that any opinion other than the obsessive over being sick gets shot down.

That may also be true. People, no matter what side they are on, can be very passionate about what they believe. What this board has taught me is to not take others opinions personally. They have their life, their decisions.....I have mine.

I try to take from everyones experiences and make my choices from there.

It is my hope that people can agree to disagree and leave things at that. State opinions/experiences/studies and leave it at that. With a board this size you're bound to find someone who wants to nitpick. Everyone needs to be understanding about where someone else is coming from.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#36 TrillumHunter

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Posted 15 July 2007 - 05:07 PM

This "housewife" was the one who suggested celiac as the root of my thirteen year history of various disorders.

Seems to me I remember one of you is bound for medical school. I would hope that you would see that many of us suffered for over a decade with this disease before diagnosis--all because no one could be bothered to put together the pieces of the puzzle right their in our files.
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#37 jerseyangel

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Posted 15 July 2007 - 05:48 PM

Another "housewife" here. I actually love what I do now, but I also loved my outside job. Unfortunately, I had to quit that one due to my illness.

This particular "housewife" had been sick since shortly after the birth of my second child--22 years ago. I saw many doctors, specialists included. The best they could come up with was sinus infections. And for this, I was given numerous rounds of antibiotics and steroids. When these either stopped working, or I became allergic, they gave me Decadron.

I slowly withdrew from a normal life outside my home. Having dizzy spells and an unreliable digestive system will do this. The panic attacks and anxiety didn't help, either.

Any energy I had went to my kids. Since all of these doctors could find nothing wrong, I hid my symptoms from everyone and became known as "standoffish" and "shy".

After a bad bout of the flu in late 2003, I never fully recovered to where I had been before. My digestive problems became severe, I lost weight, was bruised, pale and had tingling in my legs, arms and face. I was scared, and the best my doctor could do was a CBC, general metabolic blood panel and a 3 day stool test.

In desperation, I agreed to see an alternative practioner that my sister recommended. He was the first person to ever tell me that many of the things I was eating was causing me to be ill. He told me to eliminate wheat, oats, barley and rye--I had never even heard of gluten--much less knew it could make me sick.

Finally, a real lead! Armed with this information, I read everything I could get my hands on. I asked my doctor for a referral to a gastroenterologist. I went in and asked him--point blank if I could have a problem with wheat. He scheduled my endoscopy and colonoscopy that day--and a month later I had my answer. I was 49.

The gluten-free diet worked wonders--until about 6 months later when I discovered several other food in tolerances. An elimination diet helped sort that all out.

So...two years later, I remain extremely sensitive to minute amounts of gluten. This is the reason I have to be "obsessive". It's not something I would choose to do, but I will do what is necessary to not let this disease take any more time away from me. Hopefully, someday, my leaky gut will heal enough so I won't have to be so "obsessive".

Truth be told, I'd much prefer to "only" avoid gluten and not worry about personal care products and the occasional cross contamination. I've read the books and the magazines--I know what the "experts" say (as far as they know), and I guess I'm sorry that I don't fit the profile of the "typical Celiac".

I was so happy to find this forum where I could be myself and interact with people like me. It's very sad to think that I have to justify myself here, too.
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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

#38 lfij

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Posted 15 July 2007 - 05:50 PM

Another "housewife" here. I actually love what I do now, but I also loved my outside job. Unfortunately, I had to quit that one due to my illness.

This particular "housewife" had been sick since shortly after the birth of my second child--22 years ago. I saw many doctors, specialists included. The best they could come up with was sinus infections. And for this, I was given numerous rounds of antibiotics and steroids. When these either stopped working, or I became allergic, they gave me Decadron.

I slowly withdrew from a normal life outside my home. Having dizzy spells and an unreliable digestive system will do this. The panic attacks and anxiety didn't help, either.

Any energy I had went to my kids. Since all of these doctors could find nothing wrong, I hid my symptoms from everyone and became known as "standoffish" and "shy".

After a bad bout of the flu in late 2003, I never fully recovered to where I had been before. My digestive problems became severe, I lost weight, was bruised, pale and had tingling in my legs, arms and face. I was scared, and the best my doctor could do was a CBC, general metabolic blood panel and a 3 day stool test.

In desperation, I agreed to see an alternative practioner that my sister recommended. He was the first person to ever tell me that many of the things I was eating was causing me to be ill. He told me to eliminate wheat, oats, barley and rye--I had never even heard of gluten--much less knew it could make me sick.

Finally, a real lead! Armed with this information, I read everything I could get my hands on. I asked my doctor for a referral to a gastroenterologist. I went in and asked him--point blank if I could have a problem with wheat. He scheduled my endoscopy and colonoscopy that day--and a month later I had my answer. I was 49.

The gluten-free diet worked wonders--until about 6 months later when I discovered several other food in tolerances. An elimination diet helped sort that all out.

So...two years later, I remain extremely sensitive to minute amounts of gluten. This is the reason I have to be "obsessive". It's not something I would choose to do, but I will do what is necessary to not let this disease take any more time away from me. Hopefully, someday, my leaky gut will heal enough so I won't have to be so "obsessive".

Truth be told, I'd much prefer to "only" avoid gluten and not worry about personal care products and the occasional cross contamination. I've read the books and the magazines--I know what the "experts" say (as far as they know), and I guess I'm sorry that I don't fit the profile of the "typical Celiac".

I was so happy to find this forum where I could be myself and interact with people like me. It's very sad to think that I have to justify myself here, too.

i appreciate your story, we all have awful stories and it's great to be able to tell them here. I just think you are all a little too concerned with your own opinions and are really not open to other ones. I hope your leaky gut heals as well as everyone else on here. "experts" are given that name for a reason, and i'm entitled to an opinion just as well as you are.
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gluten-free since april 05
for the love of gluten-free rice krispies, can we all as a group realize that "celiacs" only refers to a group of people with celiac disease. it is not "celiacs or celiac's disease". it drives me nutso!

#39 jerseyangel

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Posted 15 July 2007 - 05:57 PM

i appreciate your story, we all have awful stories and it's great to be able to tell them here. I just think you are all a little too concerned with your own opinions and are really not open to other ones. I hope your leaky gut heals as well as everyone else on here. "experts" are given that name for a reason, and i'm entitled to an opinion just as well as you are.

Thank you.

Can you show me where, in my over 8600 posts, I have ever not been open to anyone else's opinion?
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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

#40 lfij

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Posted 15 July 2007 - 06:00 PM

Thank you.

Can you show me where, in my over 8600 posts, I have ever not been open to anyone else's opinion?

please, let's not get catty, let's drop this. Everyone is entitled to their own opinion, including me.
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gluten-free since april 05
for the love of gluten-free rice krispies, can we all as a group realize that "celiacs" only refers to a group of people with celiac disease. it is not "celiacs or celiac's disease". it drives me nutso!

#41 jerseyangel

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Posted 15 July 2007 - 06:05 PM

please, let's not get catty, let's drop this. Everyone is entitled to their own opinion, including me.

Yes, you are certainly entitled to your opinion--that was my point. ;)
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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

#42 celiac3270

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Posted 15 July 2007 - 07:01 PM

I've been away for a long time, but I saw what was going on in this post. Having been here since 2004 (i.e., I'm familiar with the board and also how confrontations like this brew), I feel compelled to interject:

The root of the conflict is not the difference in your opinions, but how they are expressed. I have had many differences of opinion with members here-- are products made on non-dedicated lines to be considered safe, are McDonald's fries safe, how much is too much when it comes to cross-contamination, where do you draw the line between careful and over the top, and on and on. At the same time, I don't believe I've had any of these discussions escalate into anything more than differences of opinion.

Particularly on online forums where you don't really know people and your words are all people have to judge you, the tone of your posts becomes important. I think the reason this discussion got so out of hand is because of the way things were said. Using the term "housewife" with a derogatory inference is clearly going to lead to conflict. Calling someone "paranoid" will have the same effect. To use the "paranoia" claim as an example: I'm not particularly concerned over wheteher shampoo or soap has gluten in it. It has never caused any issues with me and since I don't ingest shampoo, let alone in the necessarily quantities to lead to villous atrophy, I'm not concerned about it. I'm sure I could have posted that without getting into a big altercation--basically because of how I would say it.

When you use the word "paranoid," you're not only disagreeing with them, but you're personally attacking them. If you call someone a "housewife," you're unnecessarily labeling them in a way that is bound to offend. Just say things differently with a more conscientious look at how people will react to your posts, and this won't be an issue.

I've missed out on so much!
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#43 lfij

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Posted 15 July 2007 - 07:06 PM

I've been away for a long time, but I saw what was going on in this post. Having been here since 2004 (i.e., I'm familiar with the board and also how confrontations like this brew), I feel compelled to interject:

The root of the conflict is not the difference in your opinions, but how they are expressed. I have had many differences of opinion with members here-- are products made on non-dedicated lines to be considered safe, are McDonald's fries safe, how much is too much when it comes to cross-contamination, where do you draw the line between careful and over the top, and on and on. At the same time, I don't believe I've had any of these discussions escalate into anything more than differences of opinion.

Particularly on online forums where you don't really know people and your words are all people have to judge you, the tone of your posts becomes important. I think the reason this discussion got so out of hand is because of the way things were said. Using the term "housewife" with a derogatory inference is clearly going to lead to conflict. Calling someone "paranoid" will have the same effect. To use the "paranoia" claim as an example: I'm not particularly concerned over wheteher shampoo or soap has gluten in it. It has never caused any issues with me and since I don't ingest shampoo, let alone in the necessarily quantities to lead to villous atrophy, I'm not concerned about it. I'm sure I could have posted that without getting into a big altercation--basically because of how I would say it.

When you use the word "paranoid," you're not only disagreeing with them, but you're personally attacking them. If you call someone a "housewife," you're unnecessarily labeling them in a way that is bound to offend. Just say things differently with a more conscientious look at how people will react to your posts, and this won't be an issue.

I've missed out on so much!

thanks for the advice. you're right. although, i do have to walk on eggshells around here, i remember a few months ago ( i was a "lurker" then lol) how someone named srokie pretty much got nudged off the board by people really not being open to a simple opinion, i don't want that to happen to me. so i will try and watch the way i say things. ;)
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gluten-free since april 05
for the love of gluten-free rice krispies, can we all as a group realize that "celiacs" only refers to a group of people with celiac disease. it is not "celiacs or celiac's disease". it drives me nutso!

#44 Lisa

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Posted 15 July 2007 - 07:16 PM

celiac3270, oh, he is a great young man, and wise beyond his years. Bend and ear to his advise.
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Lisa

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#45 gfpaperdoll

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Posted 15 July 2007 - 07:22 PM

I think this is so funny that because one is 60 years old that a young person would assume that one is uneducated and a housewife!!! I can also type, in the dark while blind in one eye !!!

Actually I have never been a housewife but I wish I had been. I am fairly well educated & have worked with some of the greatest people in this country. They say about me that I "do not suffer fools gladly" & that is true because I do not have to, so I do not.

Do not want to blow my "cover" but here is one of my favorite little memories, I was in the elevator, going to the top floor of our building with former Governor John Connally & telling him about my latest dance event & he said "I wish I could dance like that" referring to his injury from when JFK was killed in Dallas. he was a really nice guy & would always get food on his tie at lunch, he was always gracious to eat with us "girls". Although I missed the housewife things, these memories are nice, & I guess I am thinking of them as the former First Lady, Lady Bird Johnson was buried today she was 94. She was well known for her graciousness to everyone even the housewives whether they were "educated" or not.

As far as education this country was founded by people that had very little formal education & Oprah winfrey certainly did not have a PHD. I do not think anyone would call her uneducated. Just because one is not formally educated does not mean that one cannot read and figure things out for themselves.

I am tired of addressing the "celiac" issue on this forum, I have another forum where we are all better accepted etc. but I will say that I have a double DQ1 sister that was dxd by blood & thru enterolab after that - to please me because I wanted to know what genes she had. she is fairly well educated a radiology Tech, that was a supervisor of her hospital before she retired when she was 50, & her son was a very well respected doctor that was killed in an accident last september, her only child, she is married so I guess you could call her a housewife now, her husband is also retired. She has all her son's doctor friends that hang out at the house, when they were in med school she would go & cook for them - she has read all the books etc. & we have given copies to the doctors at the hospital & clinic where her son worked.

then I have another friend that has osteoporosis & she is dx by biobsy after I gave her the book "dangerous Grains" she is english, her parents still live in England, she also tested thru Enterolab to also find out about her genes, she is double DQ1. She has family on several continents now testing thru Enterolab & they can all afford any testing that they want. Her gastro is now also using enterolab for his patients & again he has "well educated" "high end" patients that can afford any treatment that they want, so I do not think that they think it is a "scam". Being English & reserved I am not sure about all her other health details, but if she accidently gets gluttened her tummy swells up like a pregnant lady. She also has another auto immune illness, not being a medical person I forget the name but she has stopped up sweat glands, there is a two letter abbreviation for it, I think it is HS, but not sure... She has been gluten-free almost a year now.
I guess you could also call her a housewife, because her husband does have a home office & she has a home office, she is also a CPA & a certified teacher, although she only works at home taking care of her family's financial holdings etc etc.

P.S. whoever diagnosed me non celiac, thanks I will run right out & have a pizza or something, oh wait, I think you can have those delivered. I will ask my driver to call...
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