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Rachel--24

Omg...i Might Be On To Something

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Dear Patti,

Thank you for the tip! I am going to attempt putting my Spice Girl name under my avatar in a minute. Some of the features on here take a little figuring out! I am glad that we can help each other with everything! I am also going to change my avatar.

Dear Bev,

Yeah, Farts Like Machine Gun Spice may not be what you want everyone to see under your pic! :lol: I could see why you would prefer something a bit less explosive! :lol: The Separated at Bite Twin Spice might be a good one! I cannot really think of another more appropriate name! It is difficult not to fart. I just let'em rip! :lol:

Dear Grump,

We are glad you are back! Sorry to hear about the past few days being so difficult. :( Maybe this new medication will help. Don't worry. You are not boring us at all!

That boat sounds like something great for the two of you! Maybe you will get to go out on it soon! You just need some time to recover. You do not want to push yourself too hard. Overdoing it will only put your progress back.

Dear Everybody,

I do not know if my doctor will approve of the IgeniX lab. I am nervous. She may not have checked it out yet. I called today. They are going to get back to me. Keep your fingers crossed!

Sincerely,

Jin


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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Hi Grump--Glad you are feeling well enough to post! I loved the story about you and your son--reminds me of my husband and our sons. They are all old car lovers, and have quite a few between them. :)

Jin--You're welcome! Can't wait to see what you put up and decide to write.

Donna--If it's not too late, good luck!

Jeesh--I'm using my new laptop for the first time, and haven't quite gotten the hang of it yet! :blink:

Andrea--I'm still deciding on how to proceed. With the new insurance and the 3 month waiting period, I'm just at a stand-still right now ;)

Ok--gonna post this now.... :unsure:

I keep reaching for the mouse :huh:


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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Ok I am done rambling now and boring you all to death probably but just had to brag on him, ;):D

Not bored at all. It's good to hear from you and I hope the new meds work out for you.

I do not know if my doctor will approve of the IgeniX lab. I am nervous. She may not have checked it out yet. I called today. They are going to get back to me. Keep your fingers crossed!

I'm hoping.

Jeesh--I'm using my new laptop for the first time, and haven't quite gotten the hang of it yet! :blink:

Ok--gonna post this now.... :unsure:

I keep reaching for the mouse :huh:

Looks like you did good. I don't know what I'd do without a mouse either.

A laptop sounds nice..... :D Maybe someday.....not anytime soon. We've got too many health related things we would like to get done.


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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I know, Andrea--it's different when you have little ones at home ;)

Mark ordered this for me last week--I was kinda surprised. We had talked about it, but that was it. :) Still feels akward, but I really like it.


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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Hi, I went looking for my Igenex results and got lost in early November :(:ph34r::lol: which I am pretty sure when I posted my results but now I see that Andrea found them. Yeah Andrea. :D

.....

I don't know...I feel sort of up in the air too. My doctor alluded to treatment down the road, but he really never said anything about antibiotics except that he was horrified at my antibiotic history and was afraid of giving them to me. :( I see him on the 26th so maybe he'll talk more about that then.

I'll be really interested to hear what he has to say. :)

..... Ok I am done rambling now and boring you all to death probably but just had to brag on him, ;):D

...

Hi Grump, what a great story and how wonderful to have a son to brag on. :)

I'm feeling rather flat today which is no doubt related to my general misbehavior, my problem is I start feeling well enough that I am willing to suffer a little. :ph34r::lol:

Thank you Jin for reminding me that age is a state of mind, the body does change though. :lol: I totally agree with you.

There are wonderful things about growing older, finding patience, learning from your mistakes, developing a sense of humor about your own foibles.....and for me, becoming a grandmother. :)

That has really changed me, suddenly I have another relationship in the world with someone I just adore, someone I hopefully will outlive and for whom my death will mark a transition, just as my grandmother's death did for me. I feel the lineage of mother, grandmother, greatgrandmother and so on in my body in a way I never did before. :)

I know I am dingoing lots, :unsure:

Speaking of dingos. Susan we miss you. :)


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Dear Patti,

Well, I got it on there! It is a good thing you knew how to do that. I should have known, but dingo'd it! :lol: I thought "Why haven't I figured this out already?" :blink::huh: This is not rocket science. However, Lyme Brain could be to blame.

Those laptops are a bit weird. I cannot type on those things worth anything! I hate flat keyboards! I just cannot use them! I would not mind having a laptop, though. One would be especially useful in emergencies, like when the power goes out. That is kind of often here due to the severe weather.

Dear Andrea,

I heard nothing from the doctor yet. I assume I will not until at least tomorrow. She closes at 4pm. Keep your fingers crossed! Maybe she will agree to do the testing.

Dear Rinne,

You are welcome! I know the body changes as you get older, and not always for the better. I used to wear a Size 0, now I am an 8 or 10! Stupid hips ruined everything! :angry: Of course, if I was not so bloated, I could probably fit in a 6 or a 4.

Sincerely,

Jin

P.S. My avatar is Isabella "Bella" Carlisi. She is the leader of my all-female mafia I am creating. That is why it is called "La Bella Mafia". Bella also means beautiful in Italian. Bella owns The Red Fedora nightclub.


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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P.S. My avatar is Isabella "Bella" Carlisi. She is the leader of my all-female mafia I am creating. That is why it is called "La Bella Mafia". Bella also means beautiful in Italian. Bella owns The Red Fedora nightclub.

Yay I was gonna ask for a mini-narrative on the cool new avatar, but saw there was a new page and patiently waited for it to load and BAM! There it was!

I'll have a Campari & soda, plz!

My new avatar, tho I don't know how well it shows up here on a pc, is 1st a shot of the villi, then zoomed ONTO 1 villi (is that singular too?), then way zoomed to the micro-villi!!


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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Jin--Cool avatar! And I see you have your spice name up B)

Rinne--I like what you said about growing older :)


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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Dear tom,

I thought that was villi in your avatar! :lol: That is amazing. I always wondered what they looked like! Were those yours? I do not recall them showing me pics of that after my colonoscopy. I think they would not have known what to look for anyway.

I certainly did have that narrative ready! :lol: Bella is a martini kind of girl! She is classy, but dangerous. Afterall, it is not easy being The Godmother. It is a lot of responsibility. ;)

Dear Patti,

Yep, I have my Spice Name up! ;) I am Slayer Spice! Bev named me. She says I slay her, so that is where it came from! Of course, when I am not making people laugh, I kill vampires in my off-time. :lol: Bella is a fun avatar to have. Thank you for the compliments!

Sincerely,

Jin


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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You know you're a celiac when:

...You pace and circle the store three or four times when deciding on a new product, picking it up & looking at the ingredients each time. Only to leave without it, figuring why bother.

...your family thinks you're crazy for not tasting their new chocolate chocolate chip cookie recipe, because surely a little nibble couldn't hurt right?

<grrrrrrr it left a couple out - and I don't even have a new browser to blame (dingo)>


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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You know you're a celiac when:

...You pace and circle the store three or four times when deciding on a new product, picking it up & looking at the ingredients each time. Only to leave without it, figuring why bother.

...your family thinks you're crazy for not tasting their new chocolate chocolate chip cookie recipe, because surely a little nibble couldn't hurt right?

Dear tom,

I have so been there! :lol: I am so terrified of crumbs. I have a violent reaction, so I do whatever I can to avoid coming into contact with it. My brother thinks I am a freak, and will not accept the fact he is probably Celiac, too. Then I have to listen to him and my mother when the get the craps! :rolleyes: They do not deserve any sympathy.

Sincerely,

Jin


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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<grrrrrrr it left a couple out - and I don't even have a new browser to blame (dingo)>

Double grrrr it did it again!

You know you're a celiac when:

*****here's the show-stopper******

. . . it drives you crazy when someone says they completely understand your diet, they did Atkins.


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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She called 34 mildly positive.

Yeah....some people say that when there is an IND...it means that there was *something* there.....that its not negative so it must be a "tiny" bit positive.

When I was at IgeniX and sat down with Dr. Harris to go over all my test resuts.....I asked him about this because I have 2 IND's.

Both of my IND's are on double starred bands (highly specific for Lyme).....bands 34 and 39....IND's on both IgG and IgM.

I asked him if this means they are "slighty" positive or that the technician saw something to indicate a positive??

He told me NO...he said the indeterminates simply means inconclusive results. They arent positive or negative....they are basically "nothing". This is why when there are IND's on critical bands and the test is negative overall....the test should be repeated.

So according to Dr. Harris at Igenix the IND's are not weak positives.


Rachel

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Oh...to add to my previous post.

Even though the IND does not indicate a weak positive it also is not a negative.

The Igenix report will say that the presence of an IND on a double starred band (34 is double starred) in a negative report *may* indicate clinical significance.

The recommendation is to test using another method and/or retesting the WB's in 4-6 weeks.


Rachel

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Dear tom,

I thought that was villi in your avatar! :lol: That is amazing. I always wondered what they looked like! Were those yours?

I *wish* those were mine. I think they're healthy ones. Got it at some medical or science site long ago.


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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Rachel, I remember you posting that before. I think my confusion is because the PA said that it was clear she had exposure. I guess we'll see after the round of antibiotics.

She was out in the sun today at the pool and now has a terrible headache. She gets headaches often. In a way, I hope she does have Lyme and that we are catching it early ... I don't like the alternative of having learning disabilities and headaches. I can tell that she often does not feel good as she gets grumpy ... she has such a sweet disposition that grumpy is out of character for her.

Carla- I'm sorry to hear about Morgan (I think- I mean, I know it will be hard on her) I hope after a month of antibiotics she'll be able to get by with supplements and detox. Hugs, Morgan!

It was Chloe. ;) But thanks.

Oh no...putting Spice names under avatars (how in heck am I going to in-bare-ass myself by putting Farts Like Machine Gun Spice under my wedding picture? I made a very BIG effort that day NOT to fart! :P )

:lol:

We didn't decide on a spice name for me.

I was doing some research on infertility and Lyme yesterday and it was very encouraging. I found one article that said 50% of women who are diagnosed with Lyme complain of infertility.

Well, we all know which 50% I fell into! :P

Hi Grump--Glad you are feeling well enough to post! I loved the story about you and your son--reminds me of my husband and our sons. They are all old car lovers, and have quite a few between them. :)

Grump, I do think it's a good idea to have this project with your son. Sometimes it's not the finished project that is so important, but the time you spent together. It's good that you and your son are making these memories together.

I keep reaching for the mouse :huh:

You can always hook the mouse up to your laptop.

One would be especially useful in emergencies, like when the power goes out. That is kind of often here due to the severe weather.

We were at the very end of the power line at our old house out in the sticks. So, we were usually the last to get our power back ... sometimes as many as three days.

The hardest part was that we were on a well ... with a power pump. My son would have to fill up the buckets with water from the pond to flush the toilets with.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Donna...got my results right here..

Ok...so it wasnt in October (I lied :P ).....it was Sept. that I was tested.

9/22/06

Igenix IgG

18 kDa -

22 kDa -

**23-25 kDa -

28 kDa -

30 kDa -

**31 kDa -

**34 kDa IND

**39 kDa IND

**41 kDa ++

45 kDa -

58 kDa +

66 kDa -

73 kDa -

**83-93 kDa -

Igenix IgM

18 kDa -

22 kDa -

**23-25 kDa -

28 kDa -

30 kDa +

**31 kDa -

**34 kDa IND

**39 kDa IND

**41 kDa ++

45 kDa -

58 kDa -

66 kDa +

73 kDa -

**83-93 kDa -


Rachel

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Sheeesh its almost been a year since I got tested. The year went by fast!! :blink:

Donna...sorry for sending you on a wild goose chase but at least you got some good laughs out of it. :lol:

I guess I was thinking October since thats when I saw Dr. S. for the follow up and thats when we went over the results and I found out my IFA was very positive.

He sent me to Anna in October to see if her testing indicated Lyme. The rest is history. :P


Rachel

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Rachel, I remember you posting that before. I think my confusion is because the PA said that it was clear she had exposure. I guess we'll see after the round of antibiotics.

I definately think her antibodies might increase after the round of antibiotics. *Something* is causing her symptoms and this would be the most likely culprit. I actually hope it comes out positive too....so that you can address it now and hopefully she can overcome some of the challenges she's been faced with.


Rachel

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Hey Slayer Spice!! Awesome drawing....I love your characters. :D

Guess I gotta hit F5 to see Tom's villi :rolleyes: ....right now I'm looking at saxy Tom....only he's not looking so saxy :unsure: ...he actually looks kinda squished up....flattened like a Celiac's villi pre-diagnosis. :P


Rachel

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My youngest son ( 17 ) and I have been trying to get this boat done so we can all go fishing. But because of all my medical problems it has been a very slow process. We actually started on it last summer and are still not done. But we are getting close and hope to have it in the water in the next couple week.

Grump,

I loved reading your story. :)

I agree that you two should finish the boat together. ;)

I hope you're able to get it in the water soon and can report back some good fishing stories! :D

Another thing that I totally love and havent done for awhile now.

Fishing...yeah...I know...not very girly-girl. :rolleyes: But yeah....fishing is something I've always enjoyed and I'm pretty good at it too. :D


Rachel

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We used to fish when we lived in Indiana. We had a stocked pond, remember, the one with the attack bass? :lol:

It was a large pond, about an acre and a half, very clean and clear. I always felt that swimming in it was safer than swimming in a chlorinated pool ... after we caught that bass anyway.

The pool out in Phoenix at our hotel was salt water. I've read a little about that ... if I ever had a pool, that would be the way I would go.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Grump- I think it's wonderful you and your son are working on the boat. I love fishing too! My hubby and i went fishing for king salmon in the POURING rain and it was so much fun. I NEVER catch anything but I love it!

Jin- That avatar is gorgeous!!!!!!!!!!!!!!!!!

Carla- Sorry, I meant Chloe. Oops!


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

36_35_6[1].gif

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Charlie!!!!

How've you been?????

Jin,

I like your new pic too. Hope you can get your story published.


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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