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Rachel--24

Omg...i Might Be On To Something

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Off topic.......I'll be gone this weekend so don't talk too much. :lol: I might go through computer withdrawals. :lol:

Leaving tomorrow morning. Not sure what time I'll be back on Sunday, probably afternoon sometime though. Don't know what I'll look like when I get back.......I'm being run all over town and getting a makeover.......my friend mentioned bringing flip flops so I don't ruin my toes though, :P Also going to dinner at a place that says they can handle gluten free. :)

You all be thinking of Mitch being left with the three kids for the weekend. Poor hubby. He's so excited for me to get away though.....much needed break.

What you all have said about food restrictions makes sense. I'm assuming more for those who are severly limited if they restrict reactive foods? They only thing we avoid is gluten (of course) and soy (cept for soy oil occasionaly and soy lecithin). I'm only really concerned about gluten eating out though, unless something says it has soy in it.


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,

That sonds like so much fun. Are you going to post before and after pics. Im not sure hubby could handle all 5 kids with me gone overnight.

rachel,

I have been thinking about what you said about the food. I feel you are completely right. I think I am sometimes worse off cause im not eating everything like i was 2 years ago. I know im lacking calcium and other nutrients.

I also think when we give up a food for a long period of time (nomatter gluten, casein, soy, beans or what not), when we add it back to our diet, out bodies freak out. They feel like we are trying to poison them, and we react. I also think we tense up when we add a new food back in and our anxiety kicks in when we try that food again.

paula


gluten, casein and soy free

on low carb/low sugar diet

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Andrea, have a WONDERFUL time!! And, no conservative nail colors!!!!! I'm sure I speak for Donna in this, too .... you need to get a fun, wild color that you like .... and beige does not qualify! ;):lol:

And, yeah, pictures are a must. :)

I am feeling horrible. I feel like I have the flu. I've been reading a lot about Lyme and mold toxins and learned that they cause cytokines, as we have talked about before. I think that's part of the reason I have felt better on abx as I believe abx have anti-inflammatory properties.

I've been on pain killers all day. I am having Adam stop at Whole Foods on his way back home (out of town again) and buy me some curcumin. It's supposed to be as effective an anti-inflammatory as corticosteroids. Hopefully it will give me some relief.

Cholestyramine makes the inflammation worse in Lyme patients, and that is what I'm experiencing. I didn't take it today, and don't think I will take it anymore.

I read an article that peach tree extract (must buy online) is good for mold detox. If I weren't going to Germany in two weeks I'd order some. That might work for some of you. :)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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From Kassandra:

I'm out of surgery and all went well. It turns out I have no narcotic pain receptors bcuz after trying IV morphine, IV darcovet AND IV fentanyl and I was still screaming in pain, they tried another IV non narcotic med and I finally was able to stop being in horrific pain.

Just wanted to update everyone!! :)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Good news, Carla, glad this is much better.

Andrea, how exciting! Both times with friends, and the makeover...I will want to see pictures! And you have Donna's EM to play with too.

Hoping for word about Kassandra...

I feel much worse today (fatigue/foggy/asthma) and hope the ecoffee helps. Put on a mosquito repeller (tablet on an electric thing) different than the odorless liquid we usually use. I starting really reacting--crazy how some stuff like that is deathly and others are fine.

However, the good news is that yesterday I think I resolved the almond problem and the almond grinding problem!!


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Carla.

Thanks for the updates on kassandra. Im glad things are goign well for her. Too bad we all couldnt go surprise her in the hospital lol.

Ok I really stink the last few days. No matter how much i deodrant it and bathe, i still stink. I reallly hate this.

paula


gluten, casein and soy free

on low carb/low sugar diet

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Andrea, how exciting! Both times with friends, and the makeover...I will want to see pictures! And you have Donna's EM to play with too.

However, the good news is that yesterday I think I resolved the almond problem and the almond grinding problem!!

I'm taking the EM makeup with me.....thanks Donna. :)

Glad you got the almond situation solved.

Hope you feel better by tomorrow. :)

Oh, heard more from Kassandra, she does NOT need a second surgery! No stone in the bile duct!! YAY!

Yay! Good news. That's scary about the pain meds. :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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Paula,

Hang in there! It will get better. :)


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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April I'd check and see if extra detox helps the symptoms. That may give a clue that is is toxin related.

True. Detox always helped me.

So, by that you mean ramp up on chlorella, activated charcoal, and zeolite?

I can try that.....plus I need to do a detox bath. I ordered some magnesium chloride flakes.

Today it seemed a bit better. Last night I took adrenal support, magnesium, and enzymes that fight inflammation.

I *think* the massage stirred up toxins and stressed the adrenals. I got flank pain a few times recently which is usually a sign my adrenals are stressed. Sheesh! Always something!

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YAY for the weekend finally getting here! :D

I need some rest...and I can finally catch up on the posts (again). :)

Kassandra, great news about the surgery going well. Thanks for the update.....and I'm really glad you didnt need another surgery! Hope you'll be able to post soon. :)

Andrea.....this is really AWESOME!! I'm so glad you're having this mini-get-a-way. :D

Enjoy it!!! You've definately earned a little time to pamper yourself. :)

I'll be praying for Mitch. :lol:


Rachel

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So, by that you mean ramp up on chlorella, activated charcoal, and zeolite?

I got great relief from coffee enemas, more than anything, that made it clear it was a toxin problem.

Chlorella, charcoal, zeolite, light exercise, sleep, etc. Anything that helps to detox.

Kassandra is on morphine but is still in a lot of pain, so keep her in your prayers everyone. She's one tough cookie.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Kassandra is on morphine but is still in a lot of pain, so keep her in your prayers everyone. She's one tough cookie.

Awww.....I hope she feels alot better tomorrow. Yup....she is a really tough cookie....for sure! Tell her she's in my prayers. :)


Rachel

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So, by that you mean ramp up on chlorella, activated charcoal, and zeolite?

I can try that.....plus I need to do a detox bath. I ordered some magnesium chloride flakes.

Today it seemed a bit better. Last night I took adrenal support, magnesium, and enzymes that fight inflammation.

I *think* the massage stirred up toxins and stressed the adrenals. I got flank pain a few times recently which is usually a sign my adrenals are stressed. Sheesh! Always something!

Massage will overwhelm me with toxins too, especially if I do it twice in close proximity.

Carla, I am with you on ecoffee helping far more than anything else; not that the other doesn't help--I do it too!


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Wonderful news about Kassandra, I was really worried about her needing such an invasive procedure. Hope the pain and inflammation now subsides quickly and no further reactions to meds and stuff.

Sherry


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Kassandra is on morphine but is still in a lot of pain, so keep her in your prayers everyone. She's one tough cookie.

Yes she is and I will. :)


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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Me too. :)


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Good the gal stone procedure is over and went well, and I am sorry she was in such pain and the pain meds did not take. Some people have different receptors/cytochrome issues etc, there are some for example on whom some pain meds just do not work.

About inflammation, I experienced relief from back pain and shoulder pain from inflammation from LDN. Or, it could have been a combo, that the cortiosl from the adrenals stretched further, as cortisol is very anti-inflammatory too. When the immune system gets normalized from increasing the body's endorphins and metenkefalins, less cortiosol is needed, and it gues further, reducing inflammation. Just a theory to what happened to me.

I sometimes need to use a little hycrocortione cream, like on an arm or leg (yes, it all gets absorbed) , like after travelling or other things that use much cortisol. Otherwise I get the low cortisol headaches, brain fog(much better now) and salt cravings. Getting glutened with even tiny amounts is very stressful too. I eat everything else besides gluten and milk, so I think I get the things i need.

I often wake up towards the morning, I think it is from being on the low side re. thyroid meds. Really annoying.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Good the gal stone procedure is over and went well, and I am sorry she was in such pain and the pain meds did not take. Some people have different receptors/cytochrome issues etc, there are some for example on whom some pain meds just do not work.

Nora,

What's LDN?

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Glad Kassandra is doing a bit better.....

I am so glad the weekend is here. This has been a tough week!

Andrea, Have fun on your kid-free weekend! We all need those sometimes.

Tonight I woke up with the worst leg cramp. Then I almost passed out! :o Leg cramp woke me from a dead sleep and I jumped up out of the bed so fast. Then I got real dizzy and almost passed out!

The wierd thing was that my calf was cramping, then the front of the same leg started cramping. So, It didn't matter which way I stretched it out - it just kept cramping and it wouldn't stop. I couldn't walk or anything. I haven't ever had it happen that way before.

I figure maybe I am dehydrated or something so I got up - finally after laying back down to avoid passing out :o - I made some cal/mag fizz since it has lots of trace minerals and potassium along with the calcium and magnesium.

It's the middle of the night and I am up drinking this slowly. I do NOT want that to happen again!

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April, I had that happen quite often for a period of time. It was horrible. I think you were doing the right thing to take the cal/mag.

Something weird but that helped me was putting a bar of soap in the bed under the sheet near my feet. No one seems to know why this works but I wonder if it has to do with the electric charge or something.

The other thing was sipping tonic water. But I bet your cal/mag would do the trick for that too. Maybe an epsom salts bath if nothing else before bed might work.

This has all stopped for me, so is no longer an issue. It stopped pretty much after putting the soap in my bed. It has been there for a couple of years, LOL. I took it out just today and figure I no longer need it. We'll see. :)


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Something weird but that helped me was putting a bar of soap in the bed under the sheet near my feet. No one seems to know why this works but I wonder if it has to do with the electric charge or something.

OK, this is really weird. Is it a specific kind of soap? Natural? Unperfumed? I read once that not having tightly tucked sheets helps, so was it a big bar? Maybe it gives you more room so your toes don't point?


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Well I laughed out loud when I read it but read it repeatedly on the net. There is one type of soap that doesn't work according to many but can't remember which brand. I finally decided couldn't hurt to try, and it seemed to help significantly. I've only rarely had a spell since, and not as severe. I am sure it wasn't giving my toes more room--putting my toes outside the covers made no difference.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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The tumeric/curcumin Adam bought me last night seems to help with the inflammation. I didn't need a third pain killer yesterday. We'll see how it does today.

Nora, is that cream cortisol? I've never heard of it. It's not like hydrocortisone is it? I can't take anything with a steroid.

I have heard of the soap thing many times, LOL. Doesn't it help with RLS?

April, sounds like you had a charlie horse. My husband used to get those, I don't know what stopped them. The reaction to jumping out of bed too fast sounds normal. :)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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April, I had that happen quite often for a period of time. It was horrible. I think you were doing the right thing to take the cal/mag.

Something weird but that helped me was putting a bar of soap in the bed under the sheet near my feet. No one seems to know why this works but I wonder if it has to do with the electric charge or something.

The other thing was sipping tonic water. But I bet your cal/mag would do the trick for that too. Maybe an epsom salts bath if nothing else before bed might work.

This has all stopped for me, so is no longer an issue. It stopped pretty much after putting the soap in my bed. It has been there for a couple of years, LOL. I took it out just today and figure I no longer need it. We'll see. :)

Sherry,

I have actually heard of that before. My co-worker runs marathons and constantly gets leg cramps. She says the soap has helped her more than anything. She also drinks the tonic water.

I felt a little better after the cal/mag. I think I went all week without drinking enough water. Then last night I had a glass of wine. i think that finished dehydrating me.....So, today my goal is to work on REHYDRATING!!!

Today is the convention....I think I am going to have to take my 2 kids by myself.

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