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Rachel--24

Omg...i Might Be On To Something

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The combination that I have is consistant with the Celiac disease and the neuro symptoms that I have (neuropathy and anxiety). At least it makes sense to me.

That's very interesting, I have been thinking that anxiety rises if there is inflammation in the body and with untreated Celiac there is inflammation.


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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I used to joke that I couldn't go jogging when I was breastfeeding 'cause I'd give myself a black eye (or two).

:lol::lol:

There is no such thing as coming in too late on a discussion in this thread. :D


Rachel

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I have seen people with just one ... I can't remember when and I didn't have my kids genetically tested. Since people with severe symptoms are more likely to be tested and symptoms are more severe with two genes, I would bet that many around here have two.

I believe, and I'm going on memory here, that Enterolab has said that somethingt like 30% of the population has at least one celiac/gluten sensitivity gene.

Fiddle-Faddle, oh, can you imagine the PAIN? Ouch, they're so heavy while nursing, I can't imagine running!!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I'm really late on this discussion, aren't I? :(

I used to joke that I couldn't go jogging when I was breastfeeding 'cause I'd give myself a black eye (or two).

:lol::lol::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 have seen people with just one ... I can't remember when and I didn't have my kids genetically tested.

Ok...I was wondering about this for a long time. I've never seen anyone on this board or on the other board that has just one gene....even the people who get their entire families tested....they all have 2 genes but not everyone is sick. :huh:

If you say you've seen it....I will put it to rest. ;)


Rachel

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Laura,

If I could be there in five minutes I would be. :D That's sounds like a wonderful spread....even with the dairy.

That is so nice of your friends to send you roses!

Hoping your challenge goes well and you don't get real sick.

Haven't heard from Evie so I assume she's in the hospital. :(


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 have seen people with just one ...

And this statement coming right after a post about breast feeding... :lol::lol:

x

You are surrounded by the nicest people (with the exception of a couple of doctors, lol). That dinner sounds WONDERFUL!!!!! Wow!

Also worried about Evie!

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Wow, you all are fast! I feel like I've been gone for weeks and I really have only been away from the computer for a few hours :lol:

Thank you all for the warm welcomes and the information! So much to learn, so little time....

The best thing I have going for me right now is that Dh is equally up for the msg-free thing. Thankfully he got inducted into the world of diet weirdness already, with the celiac disease! I think nothing I say about food will ever surprise him anymore LOL.

My plan is to totally switch over the kitchen right after Thanksgiving. (I'm cooking for 4 large families; I think I need to keep some mainstream foods in order to keep them happy with a gluten-free feast!)

thanks for all the info and support! I'll be back!


Amy, celiac mama of 4 little celiac boys, Mike's wife, homeschooler :)

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Wow, you all are fast! I feel like I've been gone for weeks and I really have only been away from the computer for a few hours :lol:

Ha, yep, it can move kind of fast here at times, lol. Still, this is nothing compared to how it was about 300 pages ago, lol. :lol:

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My plan is to totally switch over the kitchen right after Thanksgiving. (I'm cooking for 4 large families; I think I need to keep some mainstream foods in order to keep them happy with a gluten-free feast!)

thanks for all the info and support! I'll be back!

You're making me tired already. :P

I'll be in the air Thanksgiving evening. We will be having ours the week before or after. Haven't decided yet.

You don't want to leave this thread for more than a day or you'll be lost. :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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And this statement coming right after a post about breast feeding... :lol::lol:

:lol::lol::lol: I know I had to think twice. :lol:

Laura the meal your mom is making sounds delicious and your friends are so thoughtful to send you flowers. How wonderful that you have so many people in your life that care for you.

Rachel I am still thinking about how very few things you can eat. I'm glad sugar isn't a problem for you the way it is for me. :ph34r:


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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Ha, yep, it can move kind of fast here at times, lol. Still, this is nothing compared to how it was about 300 pages ago, lol. :lol:

Yae! That was like 30 pages a day. Totally time consuming.....

Rachel I am still thinking about how very few things you can eat. I'm glad sugar isn't a problem for you the way it is for me. :ph34r:

Me too. I don't think I'd get tired of beef but everything else.....ok, maybe I'd horde the ice cream too......ok, so I WOULD.....if I didn't have much to choose from and my allergies didn't get worse. :ph34r:


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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Soooo anxious to hear how Rachel's appointment went today!!

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Soooo anxious to hear how Rachel's appointment went today!!

Ditto.


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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Welcome Amy :)

Laura- Lots of love to you during your food challenges. I know it wont be easy, but hopefully it will go fast and you will get some helpful information and answers out of it.

Donna- Best of luck with your second quadrant amalgam removal tomorrow, hope it goes as smoothly as the first :)

I am also concerned about Evie, hope we hear from her soon.

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3. My mom is making me homemade tacos tonight. Fried corn torts, beef/onions in seasoning, lettuce, tomatoes, onion, cheese, sour cream....wow. Then she made the pumpkin cheesecake recipe (with a gluten-free cookie crust) that I made for thanksgiving last year. She also made me gluten-free banana bread, and got me the gluten-free pretzels that I love. Oh, the food that I will eat. I'm a bit nervous, but I feel the support from Rachelville :)

Sounds yummy, I hope you enjoy the food and dont get too too sick. :)

My two favorite deserts are pumpkin pie and cheesecake....thats what I eat around the holidays. I love banana bread too. You're getting all my favorite holiday treats tonight! :)

I'm really worried about Evie too. :(

The best thing I have going for me right now is that Dh is equally up for the msg-free thing. Thankfully he got inducted into the world of diet weirdness already, with the celiac disease! I think nothing I say about food will ever surprise him anymore LOL.

:lol::lol:

Good that you have a supportive and understanding hubby. :D

Ha, yep, it can move kind of fast here at times, lol. Still, this is nothing compared to how it was about 300 pages ago, lol. :lol:

Thank gaaaaawd for that......my head was spinning during that time!! :wacko:

Soooo anxious to hear how Rachel's appointment went today!!

:D

I feel better about everything after seeing the hocus pocus lady. :lol:

I got lots of scientificness to share too.

Julie....I didnt forget you...I will send a pm later. :)

I *did* forget my MSG question though. :(

I only get like 10 minutes with her before she starts the actual treatment.....and there is no talking going on during the treatment. So I gotta ask everything within the first 10 minutes. I go back on Thursday so will save that question till then.

She gave me a copy of my full report.....what she sent to my Dr. I'll share some of that later too.....its got my whole treatment plan layed out on it.

I discussed my Dr. appt. with her....about how he made me feel and about how I havent gotten an exact treatment plan for the Lyme yet. She asked if he was testing for the co-infections?? I told her yes, he is but no real discussion of treatment yet. She said this is normal.....there wont be a treatment plan until he gets the results of that test.

Have to surrender the computer for a bit so will be back shortly. :)


Rachel

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Rachel, sounds like you had a great appt. :D Look forward to hearing all about it.

Speaking of pumpkin pie, I just posted a few recipes I found doing an internet search for dairy free/soy free pumpkin pies. It's very hard to find one free of both offenders. Anyway, there might be something you could work with there Rachel, maybe? :unsure: I would like for you to be able to eat pumpkin pie, or something closely resembling it. I guess you could blend mashed pumpkin into your ice cream :blink:

:lol:

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Speaking of pumpkin pie, I just posted a few recipes I found doing an internet search for dairy free/soy free pumpkin pies. It's very hard to find one free of both offenders. Anyway, there might be something you could work with there Rachel, maybe? :unsure: I would like for you to be able to eat pumpkin pie, or something closely resembling it. I guess you could blend mashed pumpkin into your ice cream :blink:

:lol:

:lol:

Julie, I've been thinking about you, how are you doing?


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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Hi y'all- laura, I know you're beginning your week from hell, but I'm so glad that you are surrounded by such caring people! :wub::wub::wub::wub:

I hope Evie's OK....I had C Diff this summer and it was awful. :(

Rachel- About the gene thing, I was only tested for DQ2 and DQ8 and i only have DQ8 (I think...I have to check my signature :P ). But my doctor only tested me for the celiac genes. Actually, have we come come to a consensus that you can be gluten intolerant but not celiac? I thought that either way, it was celiac. :blink: I'm not sure I undertsand the difference between gluten intolerance (no damage?) and having celiac.

Glad your appointment went well.

Donna- Good luck with the next step of amalgam removal. Gosh- will you be glad when this is all over!

Arrghh... got my blood tests back today. Nuthin'- which is good because he was looking for lupus, rheumatoid arthritis and some other autoimmune stuff. But my red blood cell count was low (last time my it was my white blood cell count :blink: ). Of course, my Lyme test was negative but heacknowledged the one he ran was pretty lame so he wants me to follow up with the rheumatologist.

I did have a horrific realization today...when I was having all that joint pain and stiffness, I was taking fish oil (Nordic Naturals) that has soy in it. :angry: BUT, I still don't think that's the reason.

So, I'll follow up with the rheumy and talk to him about Igenix testing. Wish I had an MD so I could just test my self!


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

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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Arrghh... got my blood tests back today. Nuthin'- which is good because he was looking for lupus, rheumatoid arthritis and some other autoimmune stuff. But my red blood cell count was low (last time my it was my white blood cell count :blink: ). Of course, my Lyme test was negative but heacknowledged the one he ran was pretty lame so he wants me to follow up with the rheumatologist.

So, I'll follow up with the rheumy and talk to him about Igenix testing. Wish I had an MD so I could just test my self!

Beverly, I'm glad to know that you don't have lupus or rheumatoid arthritis but I am confused about why if he ran a lame Lyme test on you he wants to follow up with a rheumatologist. :huh: I think I need to find out what a rheumatologist is.

Just in case anyone lurking is looking for a link to Igenex:

Igenex

I'm concerned about Evie too. :( She sounded so fragile in her last post.


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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Anyway, there might be something you could work with there Rachel, maybe? :unsure: I would like for you to be able to eat pumpkin pie, or something closely resembling it. I guess you could blend mashed pumpkin into your ice cream :blink:

Nope...no pumpkin for me. I've reacted to all the pumpkin I've tried. I'm stickin to my 5 safe foods. :P

Rachel- About the gene thing, I was only tested for DQ2 and DQ8 and i only have DQ8 (I think...I have to check my signature :P ). But my doctor only tested me for the celiac genes. Actually, have we come come to a consensus that you can be gluten intolerant but not celiac? I thought that either way, it was celiac. :blink: I'm not sure I undertsand the difference between gluten intolerance (no damage?) and having celiac.

Bev...if you only got Celiac genes tested then you dont know what other intolerance genes you might carry since only Enterolab tests for those genes.

Nope....not all gluten intolerance is Celiac Disease. I dont have Celiac Disease. Celiac is blunting of the villi...I dont have this.

Why would the guy order a lame Lyme test to begin with?? Seems like a waste....why not just order Igenix from the start?? :unsure:

Beverly, I'm glad to know that you don't have lupus or rheumatoid arthritis but I am confused about why if he ran a lame Lyme test on you he wants to follow up with a rheumatologist. :huh: I think I need to find out what a rheumatologist is.

I got sent to a rheumy in my long string of Dr.'s and specialists. A rheumatologist deals with joints and arthritis and things like this.


Rachel

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I guess you could blend mashed pumpkin into your ice cream :blink:

:lol:

I have actually blended vanilla ice cream with pumpkin puree before....not bad but you don't need much of the pumpkin. :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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