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Members In Need.....ongoing Support Thread


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18 replies to this topic

#1 AndreaB

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Posted 27 November 2007 - 02:02 PM

This thread is designed to be a place where those that need prayers, good thoughts, vibes, energy for situations they need support for to come.

A centralized thread will help keep those members needs in one place for others to see.

For those who subscribe to this thread......if it's not active at times, please make sure to re-add it to your subscriptions after 30 days. That way no one will be left without the support they need.
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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.


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#2 jerseyangel

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Posted 27 November 2007 - 02:04 PM

Thanks Andrea :)
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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 nutralady2001

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Posted 27 November 2007 - 04:44 PM

Thank you this is an excellent idea xx
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Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis
Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)
Diagnosed Hashimoto's Disease/Hypothyroid November 1994
Low B12 November 2006
Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it
Gluten free since October 2006 after failing gluten challenge
Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007
Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)
Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.
Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

#4 Judyin Philly

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Posted 27 November 2007 - 04:52 PM

thanks Andrea
Great idea. Is this a new forum topic so we can go there to ck or just a thread?
judy
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Judy in Southern CA

#5 Fiddle-Faddle

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Posted 27 November 2007 - 06:04 PM

Thank you, Andrea!!
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#6 blueeyedmanda

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Posted 27 November 2007 - 06:09 PM

Thanks Andrea :):)
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~~~~Gluten Free since 9/2004~~~~~~


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#7 Fiddle-Faddle

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Posted 27 November 2007 - 06:36 PM

So here is my first "in need" post on this thread:

My son's friend Noah, age 8 1/2, is STILL in terrible trouble.

He has been in a medically induced coma since Labor Day because of encephalitis-caused seizures. The latest cat scans show extensive brain damage. They are still unable to bring him out of the coma without further seizures.

I am not sure what to ask for here--maybe visualizing his brain tissue recovering against all odds? Seizures ending? His opening his eyes, smiling, and hugging his parents?

Prayers?

Our family--and our whole community--is heartbroken. And that's gotta be nothing compared to what his family is going through.

Thanks, everybody.
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#8 AndreaB

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Posted 27 November 2007 - 07:52 PM

Judy,

It's a thread devoted to those in need of support.



Alison,

I'm sorry to hear about Noah still not doing well. I'll let my family know about him too.
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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.


#9 Judyin Philly

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Posted 27 November 2007 - 07:55 PM

Alison.....Noah has been in my nightly prayers since I learned about him and his family.
They will continue as for those for you....who cared enough to bring them to our attention.
judy
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Judy in Southern CA

#10 Cheri A

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Posted 27 November 2007 - 08:23 PM

I was wondering how Noah was doing... I'm :( to read your post. He and his family, the medical staff, and your family continue to be in my prayers also.
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Mom of:
Carleigh~ 10 years old, allergic to wheat, milk, peanuts, strawberries, and many EAs. She is currently soy-light and egg-light ~ celiac testing inconclusive by allergist.
Gluten-Free since 10/05 She's a gymnast. : )

Nick ~ 13 years old with no known allergies.

#11 Canadian Karen

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Posted 27 November 2007 - 08:48 PM

Allison, I too was wondering about Noah. Sad to hear things have not taken a turn for the better....

Continuing to pray....

Hugs
Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
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#12 Ursa Major

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Posted 27 November 2007 - 10:29 PM

Alison, I will pray for Noah right now.

I could sure use prayer. Things are deteriorating here at home, it is getting unbearable for Susie and me.

Her vice principal in charge of her at school is a complete jerk, and her and my husband are getting to be great buddies, which is very upsetting to Susie and me. They seem to be doing everything they can to make life miserable for Susie, who doesn't deserve that, she is a sweet kid.

I am glad that she is going to move to live with her older sister and her family in February (our second-oldest, ten years older than Susie), for her sake. But her being gone will make things harder for me.

Anyway, I won't go into more detail than that. But I am at the end of my rope.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#13 Glutenfreefamily

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Posted 27 November 2007 - 10:46 PM

Fiddle faddle- Noah and his family are in my prayers, I hope things turn around for him soon.
Ursa- Im so sorry you are having family problems, I will be praying for you also and your daughter Susie.
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#14 Fiddle-Faddle

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Posted 28 November 2007 - 04:33 AM

Alison, I will pray for Noah right now.

I could sure use prayer. Things are deteriorating here at home, it is getting unbearable for Susie and me.

Her vice principal in charge of her at school is a complete jerk, and her and my husband are getting to be great buddies, which is very upsetting to Susie and me. They seem to be doing everything they can to make life miserable for Susie, who doesn't deserve that, she is a sweet kid.

I am glad that she is going to move to live with her older sister and her family in February (our second-oldest, ten years older than Susie), for her sake. But her being gone will make things harder for me.

Anyway, I won't go into more detail than that. But I am at the end of my rope.


Sorry things are so frustrating, Ursa.

I don't suppose it would help if Susie were to smile and pretend to agree with your husband and the vice principal? Just until February? Sort of as a survival thing...

Anyway, prayers sent!
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#15 jerseyangel

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Posted 28 November 2007 - 04:51 AM

Alison,

I will keep Noah and his family in my prayers. :( We need to keep that positive energy flowing his way.

Ursa,

Gosh, I'm so sorry about you and Susie. You are in my thoughts, 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


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