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Urgent -- I Need Your Help


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59 replies to this topic

#31 Judyin Philly

 
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Posted 15 September 2006 - 06:26 PM

Lynne..love the new avatar (just to give you something to cheer up about)
Has she been on a antib lately???? i know your getting great info...I just remember that when working at the hospital we had to get tested every year. One year they asked if I'd been on a certain antib and i had so they told me not to take the test for 1 month as it would not be a correct reading. Now i'm assuming she had blood work done so guess this is a mute pt..but just thought i'd add it.
sorry i didn't see you thread as i wasn't on today.
judy
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#32 gfp

 
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Posted 16 September 2006 - 01:48 AM

gfp -- just talked with my daughter again -- she was blown away by your offer. She is going to call the doctor to see if they want to do that, and if so, we'll get it in motion. We will reimburse you ANY costs that you incur during the process, should this happen. She said to thank you VERY much. Much love to you, Lynne

Lynne, other than the hospital I can't forsee any costs.... seriously my American friends are conspiring ...
I have a friend an ex air steward keeps offering me airmiles, her mom in Pensecola telling me I must visit and sending me packages ... my friend Chip in Boston offering me his beach house in NE and jeep if I will just get a biometric passport and visit.(also trying to blackmail me that he won't visit me if I don't visit him and his lovely wife but I found out last night he's going to crack and visit first).. and places in NYC, DC, Seattle ... the list goes on.....

I never thought anything of my immunity ... well when I was 11 I thought it was inconvenient getting a jab...i didn't need and I never really figured out why they were so perturbed by my immunity..I mean why do the test if they just jab you anyway?
Then since last night (European time) I looked around and apparently natural immunity is some genetic freak (no surprises I guess)...

Either way I talked with my girlfriend and I'm going to ask my (our) Dr. about donating blood for research anyway!

I just talked to my friend the air steward and she said she donates her DNA (she has a double cancer gene) ... and she just told me her mom has been doing more celiac research on me (products and telling Judy she has to really scrub her kitchen and use seperate utensils (Clydie your not here are you))

Other than that the side effects of treatment are largely age related but worse for females on the whole....
I think most of the horror stories about the treatment are probably exagerated by the fact they are concentrated in very poor communities and third world countries with no follow-up and monitoring.

Best wishes and good luck!
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#33 Canadian Karen

 
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Posted 16 September 2006 - 04:39 AM

Lynne,

Sorry I missed this whole thing. I feel terrible now about not being there for you! Sounds like you got excellent information (knowledge is power!) and gfp, what can I say? You rock!

Will try to call today..... Rhiannon has a birthday party today, other than that, not too busy......

Wuv ya Darlink!
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......

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#34 happygirl

 
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Posted 16 September 2006 - 04:52 AM

Lynne, sorry to hear that you are going through this. Please keep us updated on Ashley's journey. xoxo
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#35 lindalee

 
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Posted 16 September 2006 - 08:12 AM

Hi Lynne, Sorry to hear about this. Carla's right about the B complex. Prayers to all. LL
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Lee

#36 tiredofdoctors!!!

 
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Posted 16 September 2006 - 01:24 PM

Thank you all, so VERY much.

gfp -- my daughter's doctor didn't call her back yet. She has an appointment, I believe, in the beginning of the week. I have to say again -- you are amazing. I can't thank you enough for offering this. If I am not mistaken, you are atheist? I have been yelled at by MANY a family member that I must be an "agnostic" -- because I believe in a God, I'm just not sure yet in what FORM . . . . would it be okay with you if I said prayers of thanks for meeting you and for the type of person you are? I find your offer to be so generous . . . it boggles my mind.

Again, thank EVERYONE for your information, your kind words, and your prayers. So far, Ashley seems to be taking it in stride -- not that we haven't shared our moments of tears on the phone. Her boss wanted her to work 9 hours today -- in retail. She told him that the last blood panel was not in which would determine whether her TB was latent or active, and that she could still be a potential threat to her co-workers and customers. He told her to come in ANYWAY! She asked me to call them . . . for some reason, I thought that was so cute -- and I felt so needed again. ("Mommy, FIX it." came to my mind, like when she was little) I called, the manager was "at lunch and not to be interrupted." So I was asked if I wanted to speak with the co-manager. She is from India -- when I told her the situation, she said, "Oh NO -- she does not need to be working right now. Tell her to call me when it is okay for her to come back to work . . . . and tell her I hope she is doing better." Quite a difference of opinion, huh? She was a very sweet lady, and I thanked her very much.

So, I think we have heaved a collective sigh of relief that it is going to be okay, that she is going to get through this and continue to be happy and healthy, and that this is just another bump in the road. I think she would have preferred that this bump not happen so soon in her marriage, but evidently she DEFINITELY takes after her mother! My gluten intolerance "bump" happened about this far into our marriage . . . but we didn't know what it was! Like mother, like daughter, I guess!

Love, love, love and hugs to you ALL,
Lynne
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Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

#37 tiffjake

 
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Posted 16 September 2006 - 02:18 PM

I just found out that my daughter, Ashley, has been diagnosed with latent TB. She had to have a TB test at school, and the nurse told her that the reaction was the worst she had seen. They did a number of panels of bloodwork, and her "numbers" -- I don't know WHAT numbers -- were extremely high. A chest X-ray showed that it was normal, and they said that she doesn't have ACTIVE TB.

The doctor at school said that she thinks Ashley contracted it when she was volunteering for Big Brothers / Big Sisters. She said that those kids are frequently exposed to TB, but do not have regular immunizations or testing, so it's difficult to know.

At this point, they are putting Ash on medication -- I believe she said INH (???) for 9 months. She will have to have a chest x-ray once per month during that time to make sure that it has not become active. She said that the doctor indicated that increased stress levels, illness, and I can't remember the others can induce the TB to become active.

My books are all in boxes and piled 5-high. If anyone knows ANYTHING about this, I would appreciate any information you can give me.

Also, if you are the praying type, I would appreciate those, too.

Thank you,
Lynne


(I didn't read the whole thread, so I am not sure if you replied later with more info..just wanted to throw in this info before my gluten-free noodles turn to mush...making dinner)

My husband has latent TB. He will start INH when he gets states-side again, because the meds are hard on the body (so the docs say). He is fine. No biggie. I know you are worried, I just don't want you to freak out! He gets chest x-rays when he gets a cought to make sure that it has not become active. But if it did, it is very treatable these days, once detected. Hope she is well on her way to INH! Tiffany
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EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes
DQ2 and DQ3 sub type DQ7 in December 2005
Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.
THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

#38 penguin

 
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Posted 16 September 2006 - 03:35 PM

Lynne - No advice here, but you and your daughter are in my thoughts!
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Alright, don't worry even if things end up a bit too heavy
We'll all float on, alright
Well we'll float on good news is on the way...

#39 gfp

 
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Posted 17 September 2006 - 03:18 AM

Thank you all, so VERY much.

gfp -- my daughter's doctor didn't call her back yet. She has an appointment, I believe, in the beginning of the week. I have to say again -- you are amazing. I can't thank you enough for offering this. If I am not mistaken, you are atheist? I have been yelled at by MANY a family member that I must be an "agnostic" -- because I believe in a God, I'm just not sure yet in what FORM . . . . would it be okay with you if I said prayers of thanks for meeting you and for the type of person you are? I find your offer to be so generous . . . it boggles my mind.


Lynn, feel free if it helps you .....

Look, its no big deal really. I am a big supporter of voluntary blood donation but most of my working life I have been excluded because of travel and the fact they don't want my blood when I have been in Africa/Asia in the last 3 years since screening everything is costly on a individual basis.
My girlfriend has a rare blood type and always donates... and once again I'm malaria free after 3 yrs so I can too!
My girlfriend is also signed up for bone marrow so if they need marrow she will get a call.... now that is scary... but as she says with her blood type its the least she can do.

So for me, I spent most of my professional life a bit peeved I couldn't contribute by giving blood ... people die all the time because of lack of blood for transfusions but I understand that by having to screen mine for everything from yellow fever to malaria its too expensive as a regular thing.

So finally I'm free of having travelled to certain countries in 3 yrs.... I can give blood and I find that something I never really thought much about (my TB immunity) might actually be useful and my only excuse for my American friends for not visiting is my non biometric passport which I'm opposed to on ethical grounds....

Helping someone with an illness completely blasts my stubborness on biometric passports out of the window ... really this is the only issue ... giving some blood? Heck I make more than I need (specially from a oxygen level), antibodies.. got them spare... so honestly the biggest thing I have to over come is the passport....

I'd be lying if I said I wouldn't look forwards to visiting all my friends..... and really this is the only thing putting me off. Yes, I'm stubborn but much as I might make life difficult for myself over my stubborness .... (ah ya get the point) ....
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#40 debmidge

 
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Posted 17 September 2006 - 03:54 AM

Lynn

My sister, aged 42, was diagnosed with latent TB when she was about 20 years old and she has severe asthama too. She opted not to take the panel of anti biotics and knock wood she's healthy and had her second baby last year. It's believed that she was introduced to TB germ thru an elderly family member when she was a child.

Hope all goes well for Ashley and she goes thru this with flying colors.

Debbie
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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 2006
It 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

#41 ravenwoodglass

 
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Posted 17 September 2006 - 10:24 AM

Lynn, feel free if it helps you .....

Look, its no big deal really. I am a big supporter of voluntary blood donation but most of my working life I have been excluded because of travel and the fact they don't want my blood when I have been in Africa/Asia in the last 3 years since screening everything is costly on a individual basis.
My girlfriend has a rare blood type and always donates... and once again I'm malaria free after 3 yrs so I can too!
My girlfriend is also signed up for bone marrow so if they need marrow she will get a call.... now that is scary... but as she says with her blood type its the least she can do.

So for me, I spent most of my professional life a bit peeved I couldn't contribute by giving blood ... people die all the time because of lack of blood for transfusions but I understand that by having to screen mine for everything from yellow fever to malaria its too expensive as a regular thing.

So finally I'm free of having travelled to certain countries in 3 yrs.... I can give blood and I find that something I never really thought much about (my TB immunity) might actually be useful and my only excuse for my American friends for not visiting is my non biometric passport which I'm opposed to on ethical grounds....

Helping someone with an illness completely blasts my stubborness on biometric passports out of the window ... really this is the only issue ... giving some blood? Heck I make more than I need (specially from a oxygen level), antibodies.. got them spare... so honestly the biggest thing I have to over come is the passport....

I'd be lying if I said I wouldn't look forwards to visiting all my friends..... and really this is the only thing putting me off. Yes, I'm stubborn but much as I might make life difficult for myself over my stubborness .... (ah ya get the point) ....


If your traveling here to do a donation isn't practical would maybe the Red Cross or Doctors without Borders or some other organization help with collecting, processing and transporting the donation? Don't know if this would be an option but I thought I would throw it out there.
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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)

#42 jerseyangel

 
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Posted 17 September 2006 - 12:34 PM

If your traveling here to do a donation isn't practical would maybe the Red Cross or Doctors without Borders or some other organization help with collecting, processing and transporting the donation? Don't know if this would be an option but I thought I would throw it out there.

This is a good idea--I was kind of wondering the same thing--but I didn't know which agency would best handle something like this.
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Patti


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"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#43 Jennas-auntie

 
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Posted 17 September 2006 - 01:24 PM

Hi! If it's any reassurance, like you say most people with latent don't develop the full blown thing, and my husband tested positive for latent TB in a screening test for a job about 9 years ago. (Thinks he got it from working with people who had once been institutionalized and had been relocated to group homes, as that population has a higher rate, but you can get it from anywhere, even one exposure to someone, though that is rarer). He went on the INH for 9 months and that was that. I agree with the others though, it is important to avoid alcohol while you take it and to be very cautious if one is taking any other meds that get metabolized by the liver. I don't think she will need CXRs every year, I know they don't do that for him, but if he needed to be screened for another job for example, they would have to test him via CXR rather than the skin prick test, or if they ever decided to screen him again. Anyhow, I hope she does well and I think she will!
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#44 High-Tech Mom

 
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Posted 17 September 2006 - 02:11 PM

Lynne,

So sorry to just read this thread - I've been overwhelmed getting my family gluten-free, and myself a low-fat diet (thanks to you!!), and haven't had a chance to catch up on the new posts. I don't know how you all keep up!

My husband had latent TB, and probably got exposed while traveling abroad. The previous posts are true for our experience too. He took antibiotics for 9 months, had his liver function regularly tested, and took the necessary vitamin supplements. The skin TB test, now that he has been exposed, will always return positive, so he will have to get chest x-rays for the rest of his life to determine if he is ever exposed again and it develops into active TB. Not cool, but that's the way it is.

Thankfully for your daughter, if it was a true exposure to TB, it was caught in the latent stage and easily treatable. My husband was in denial for a long time because he did the research, and apparently there are false positives on the skin TB test. I'm glad, however, for the family's sake, that he went on the 9-month antibiotic regimen.

Take care.
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#45 happygirl

 
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Posted 17 September 2006 - 03:39 PM

hey lady....still thinkin about your family. keep us updated. xoxo
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