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Rachel--24

Omg...i Might Be On To Something

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Dear Rinne,

I will definitely look into the Lyme site you mentioned. I want to find out more. I am sure the Salt/C combo could really help me. That is what I could do right now! The sooner I start doing something, however small, the better!

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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We need to add "taifun" to the Rachelville dictionery! :P

taifun (ti foon) n. Wealthy, powerful. Rinne.

Yes!! We will eat cake!! Of course my cake will still have to be gluten-free, but I can have a big ole scoop of peanut butter/chocolate ice cream with it. :P

Peanut butter--dare I even think it! :lol:


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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When we are well I think my cake will have to still be gluten-free

I don't think it would be a good idea for any of us to be regular gluten eaters. With Lyme, we want to be strong so our immune system can keep it in check. Gluten seems to be hard on the immune system according to all Rachel's scientificness.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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A 6 1/2 inch skillet is only about $9. https://secure.lodgemfg.com/storefront/prod...;idProduct=3923

Then just get stainless pots.

Dear Carla,

Thanks for the link! :) I am so glad you found that! You know, I think I sell some of those! Maybe I could afford a set! The white price is fairly inexpensive. That is one advantage I have. I can purchase my own products for less! That would be great!

Dear Bev,

That cake and Reese's Cups sound heavenly! Don't get me started on chocolate! I desperately need some right now! OMG! Cake sounds so good! I do have some cake, but it is not chocolate. I have half a nerve to run to the gas station and get me a candy bar and some potato chips if they have any I can have! :lol: I am a hungry woman! My highlight is going to the grocery store and thinking about all of the food I can get to eat! :lol:

Dear Everybody,

Did anyone else have trouble tanning before going gluten-free? This is something I just noticed. I always had difficulty sitting in the sun without getting burned. Lately, I can stand the sun for much longer, and get some color! Before, I could barely get any color. A tan for me was still terribly pale compared to others' skin.

Sincerely,

Jin

P.S. Mom's hairdresser is checking out the dye I have been using to see if I could get my hair done like Jennifer Aniston's. I will let you know what she says.


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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I am positive for Lyme on both the IgG and the IgM!!!!!!!!!!!!!!!!!!!!!!!!!!

BEV!!!!!

Heinousity aside , I'm pleased you now know ;)

The old LYME CLAN's getting a bit a bit busy <_<

...and PATTI!!! You go girl and get them tests!! :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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Dear Nikki,

Nice to see you again! How have you been doing? We have had a number of developments!

Well, blow me if we have not made progress! :lol: I love saying that! ;)

Dear Everybody,

I took the sensitivity test as well. I scored 20. That is highly sensitive. I know much of this has to do with my psychic ability. I am an empath, which can be difficult to deal with. I feel others' anger and hurt, etc.

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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We need to add "taifun" to the Rachelville dictionery! :P

taifun (ti foon) n. Wealthy, powerful. Rinne.

Yes!! We will eat cake!! Of course my cake will still have to be gluten-free, but I can have a big ole scoop of peanut butter/chocolate ice cream with it. :P

Peanut butter--dare I even think it! :lol:

:ph34r::lol:

We shall all be well and all be taifuns in our lives, making waves where ever we go. :lol:

I don't think it would be a good idea for any of us to be regular gluten eaters. With Lyme, we want to be strong so our immune system can keep it in check. Gluten seems to be hard on the immune system according to all Rachel's scientificness.

I agree, I think most of the population is gluten sensitive but reacts in different ways. I see many people putting up with varying degrees of discomfort rather than change.

We all know how hard it is to do that, the other night I went out for dinner with my sweetie, as in he had pizza and a beer and I had a fancy Italian carbonated water. :lol: I thought what if there was a gluten free pizza place in this town that delivered to restaurants?

The old LYME CLAN's getting a bit a bit busy <_<

...and PATTI!!! You go girl and get them tests!! :)

Nice to see you and I'm with you, yes PATTI to getting the tests. I think I may have said that once already. :P

You said Lyme Clan. :lol:

Well, blow me if we have not made progress! :lol: I love saying that! ;)

Jin, you are one funny girl. :lol::lol::lol:


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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bev, i just saw that you are positive....all i can say is wow and hugs to you!

ok so the question that we all have is....are you cdc reporting requirements positive, igenex positive, etc? Definitely need to have you post your bands, etc....very curious.

I'm so happy you are getting some answers, my dear. i've had such similar symptoms to you and patti, so i'm happy that you went ahead and got testing. we all needed a little bit of prodding i think :).

patti-i am proud that you are taking this step.

i had a full igenex test complete with co-infections run yesterday. so it'll be interesting to see what it looks like when it comes back. i have some more issues that I need some input on, but i'll post about that later.

hugs to bev, patti, and you too judy. xoxo

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I've got half a dozen stores lined up that want to sell them, it is just putting all the pieces together.

So glad to hear how thing are going. Must be quite hectic learning everything. :)

I am so glad I decided to jump into this thread, lol. I would have NEVER in a million years suspected lyme, never. I also may not have ever connected mold, mercury or any of the other stuff to my issues had it not been for you girls!

When we are well, we shall eat cake. :lol: Chocolate, with thick heavy chocolate icing please! :lol: Perhaps with some crumbled up Bumble Bars on the top! And perhaps another layer of peanut butter. :P:lol: And there shall be milk! :lol:

I'm happy you did to.

I LOVE frosting!!! :P

I do not think I can afford cast iron. I can afford an entire set of non-stick pans.

What about just buying a skillet (stainless steel or iron) and a 4 quart pan. Those would get you started.

You can only do what you can do though and I understand the financial pinch.

When we are well I think my cake will have to still be gluten-free, but that's fine!!! I would like crumbled Reese's pb cups IN the cake, in the frosting and one on each prong of my TWO five-pronged forks !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I'm with you on this one!!! :P:lol:


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'm so happy you are getting some answers, my dear. i've had such similar symptoms to you and patti, so i'm happy that you went ahead and got testing. we all needed a little bit of prodding i think :).

I'm glad you came to this thread and went ahead with testing too. :D

Will be waiting for your other questions. Not that I'll be able to answer anything. :P


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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Will be waiting for your other questions. Not that I'll be able to answer anything. :P

What do you mean Andrea....you've learned so much here I'm sure you can answer most questions like a pro. ;) ....I've witnessed it with my own two eyes. :)


Rachel

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i had a full igenex test complete with co-infections run yesterday. so it'll be interesting to see what it looks like when it comes back. i have some more issues that I need some input on, but i'll post about that later.

Laura, I cant wait to hear your results. Are these all re-tests?? You've done all the co-infections previously right?? It'll be interesting to see your Western Blots now that you've been on treatment. I wanna redo my own but I'm not sure when yet.

I also wanna see Bevs positive bands....I'm assuming she doesnt have that info yet since she got the results over the phone....but I'll be waiting ( and not so patiently). :P


Rachel

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Dear Everybody,

Did anyone else have trouble tanning before going gluten-free? This is something I just noticed. I always had difficulty sitting in the sun without getting burned. Lately, I can stand the sun for much longer, and get some color! Before, I could barely get any color. A tan for me was still terribly pale compared to others' skin.

I burn alot easier since I got sick. I've always tanned easily but with all the imflammation, fluid retention, toxins, etc....my skin is sometimes more pale and I'll burn pretty easily before I get any kind of tan. :(

It didnt help when I went off gluten...I guess cuz I'm still toxic (like Britney Spears :P ).


Rachel

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BTW, I asked about the C D 57 test ... my LLMD doesn't use it. They treat based on symptoms. She said sometimes someone is highly symptomatic and has a high number, then another will have few symptoms and a low number. She said though the test isn't useless, they don't use it to guide their treatment so they don't do it.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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We shall all be well and all be taifuns in our lives, making waves where ever we go. :lol:

Yeah...taifuns. B)

Instead of making waves...I'll be riding them...me and my jetski.....Oooooh I cant wait!!! :D

Next time I wont feed deer though. :ph34r:

I will have to figure out a way to make my campsite totally tick-free. <_<

And yeah...I'm sure I'll still MAKE some waves now and then too. :P


Rachel

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Laura, I cant wait to hear your results. Are these all re-tests?? You've done all the co-infections previously right?? It'll be interesting to see your Western Blots now that you've been on treatment. I wanna redo my own but I'm not sure when yet.

I also wanna see Bevs positive bands....I'm assuming she doesnt have that info yet since she got the results over the phone....but I'll be waiting ( and not so patiently). :P

I can't wait to see how Laura's re-test turns out either. :)

Bev's appointment isnt' until the 6th of June so I assume we'll have to wait that long.

If Patti winds up positive for lyme then I may really have to quesiton why I'm here. :P I think I'd be the only non-lymie unless I'm forgetting someone. :unsure:


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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BTW, I asked about the C D 57 test ... my LLMD doesn't use it. They treat based on symptoms. She said sometimes someone is highly symptomatic and has a high number, then another will have few symptoms and a low number. She said though the test isn't useless, they don't use it to guide their treatment so they don't do it.

That's kindof what I got when I looked into it. Seems like an intersting test to go hand in hand with everything else though.


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 don't know if anyone remembers me posting about the pain Talitha was having on her left side around her hip a few weeks (month :unsure: ) ago. Now she's got a pain on the same side but from her armpit/chest area down to the bottom of her rib cage.

I sure wish I knew what was causing her these pains.

I think she's doing a little better now but she explained this one as feeling like a needle and a rock we hitting her on the inside.


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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Andrea,

I didn't know Talitha was having pains like that. I must have missed it. :unsure:

The upper ones sound like they could be "stitches"--sometimes you can get those for no reason. Is it worse when she is taking a breath? That happens to me once in a while. I take shallow breaths until it passes.

Hope they stop real quick :(


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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If Patti winds up positive for lyme then I may really have to quesiton why I'm here

You're here because you're our friend and we love you! Plus, you have lots of dietary restrictions going on, the same as everyone here.

If I'm negative, which I expect, I'm not leaving, and you can't either ;)


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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BTW, I asked about the C D 57 test ... my LLMD doesn't use it. They treat based on symptoms. She said sometimes someone is highly symptomatic and has a high number, then another will have few symptoms and a low number. She said though the test isn't useless, they don't use it to guide their treatment so they don't do it.

Carla I was actually thinking about this today at work.

I was wanting to ask all that had the CD57 test if they *feel* that it is accurate for their situation??

So yeah...I wanna do a CD57 poll here. :P

Heres the results...

Rachel (thats me :) ) 78

I feel like this would be on target for me based on the results of both my traditional and alternative testing. Especially in-line with my ART sessions. A very low number would have shocked me since I do not feel Lyme is my primary issue right now. A very high number would have seemed kind of off...given the fact that Lyme is showing up and I am sick from mercury and Lyme related issues. If Babesia is more of a stressor I'm not sure that would be indicated in the CD57...I dont think it would be.

Charlie 60

Dont know if he feels this is on target but would like to know??

Donna 84 (is that the correct #)

What do you think Donna?

Bev 32

Ok....so from what I know about each of us...as far as symptoms, history, other issues, etc. To me the #'s seem to correlate.

I would consider myself to be pretty affected and definately having some major issues getting in the way of living life the way I'd want to. However, knowing that mercury is what really knocked me down and that I have major candida problems....I did not expect the CD57 to be low...even though my symptoms are definately there.

So it makes me wonder if the CD57 is useful but doesnt match up with everyone because of other issues?? So basically if someone is highly symptomatic yet has a high number....what if its a co-infection....or mercury...or a virus...or something else thats causing the symptoms and the Lyme is actually being handled??

Or if someone has only a few symptoms but a high number....what if they arent extremely symptomatic because they dont have co-infections, problems with metals etc?? What if for whatever reason their immune system is not getting a handle on Lyme yet they arent totally incapacitated either.

Sort of like people who are found to have Celiac...total wiped out villi...yet no symptoms. They arent horribly sick....but having no villi and the immune reaction itself has to be taking a toll on their bodies and their immune system.

So couldnt the CD57 be a true indicator of how well the immune system is coping with Lyme? I dont think its suppossed to match severity of symptoms...but more having to do with the immune systems capability of keeping the infection in check. If we were just going by symptoms alone then I would expect mine to be really low. :(

I think it could be why alot of people feel like they've recovered but then later....after having stopped treatment...they relapse. They may have been free of symptoms but their immune system isnt ready to take over completely...and so they relapse.

Anyways....its another unproven test but so far I dont think they've found any other diseases which seem to affect the CD57 count...just Lyme. I just look at it as another tool.....it could be useful to some and not others.

I still wanna know what everyone else thinks about their results though. I think me and Donna are the only ones thinking mercury/candida are contributing a great deal to our symptoms. We also have the highest CD57 count.

Donna is obviously better off than I am in every way.....well except for the fact that she cant sleep sometimes...I have no problems with this...I can fall asleep anywhere. :rolleyes:


Rachel

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Rachel: I had the full Western Blot, etc. done through Igenex. I have only had the co-infections test through Quest, because she said they are often negative anyways, so she doesn't place but *so* much emphasis on a negative test. I've had two tests done through quest...first one I was positive for RMSF, second one (after I'd been on treatment), I was negative. She also ordered a Quest Lyme test, too, just to see.

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And my doctor's rationale of not ordering the C D 57 was very similar to Carla's...I think they treat very similarly. (Not knocking it by any means...at all! Just offering what I know) Her words were "I know you are sick." :)

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The upper ones sound like they could be "stitches"--sometimes you can get those for no reason. Is it worse when she is taking a breath? That happens to me once in a while. I take shallow breaths until it passes.

I just asked her and she said it hurts more when she breathes but if she takes smaller breaths it feels better.

You're here because you're our friend and we love you! Plus, you have lots of dietary restrictions going on, the same as everyone here.

If I'm negative, which I expect, I'm not leaving, and you can't either ;)

Thanks. :wub:

I'm not going anywhere. I've come to love all of you guys. :)


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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