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Rachel--24

Omg...i Might Be On To Something

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Glad to hear you're going to try to kick the melatonin. My dr told me that long-term use of melatonin can shrink the pituitary(? or was it pineal? one of those P-glands in the brain). He gave me some, but said to only take it a maximum of 2-3 times a week. Still haven't taken it.

Do you drink salt water? It might help with the dizzy/vertigo. Hope that sensation doesn't last. That would suck.

Gives new meaning to the term "p(ea)-brain". :lol:

I don't drink salt water, but I get SOOOO much salt in my diet, it's hard to imagine it could be lack of salt. I literally salt just about everything. I used to get the dizzy/nausea feeling all the time. Last year sometime it stopped and I only get it ocassionally now. That used to be one of my most troubling symptoms. It literally has been months since it happened regularly...it's happened a few odd times in the last few months.

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How's your tummy today, Andrea?

Ok bathroom question for everyone- does everyone go everyday? Just curious.

Yes, but on the Cowden protocol they want you going at least twice, preferably three times per day. It's heavy on the detoxing. So, I'm on magnesium and vitamin C. Sometimes I can go twice per day ..... I have to keep increasing the C and mag until I do regularly.

Chloe is on Cowden .... I asked her how many times per day she goes to know how much mag to tell her to take .... she said FOUR!!! :o She is the most regular person I have ever seen, every meal, straight to the bathroom, and not d.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Nyxie, yes he is THE Dr P! :D

Donna, funny how we sometimes discover things by forgetting them! I hope it works out OK without the melatonin. Try not to think about it too much - that would be enough to stop me sleeping!

S x


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

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Ok- quick update. I had a sonogram done this week, abdominal and pelvic. I was kind of dreading it and sisn't know why I think mostly becasue i doubt it will show anything and i really wish it would. But at lesat i figured it was uninvasive.............Wrong!!! The pelvic was invasive and lets just say it was less than enjoyable!!

I have chelation today and am going to set up an appt. with my doc. I ahve a long list of things I want to discuss with him and its too much to do over the phone or via email.

I have my endoscopy and colonoscopy scheduled for FEb. 1st. (yes I am dreading that- although I ahve to admit looking forward to the anesthesia)

Ok bathroom question for everyone- does everyone go everyday? Just curious.

Miamia

Miamia, so glad you checked in

I am sorry you had to go through that rough pelvic exam :(

Keep us posted on your upcoming procedures, and I hope the talk with your Dr goes well and is fruitful. I'll be thinking of you. :wub:

And to answer your question, after 10+ years of chronic constipation I am going at least once a day, which is miraculous for me :lol:

I do lean towards c though, and might have a day or two, three at the most, with no movements, but only once in a while.

Everyone - just had my telephone consult. It's the first time I've really felt listened to about my health and taken seriously :D Dr P was lovely and is sure that I'm still hypothyroid (silly blood tests) and that my main problem is adrenal. He also thinks it's highly likely that I have a candida problem :ph34r: I told him that freaks me out having done the diet before, but he was very reassuring. Once I've had my adrenals tested, I'll have natural thyroid and adrenal support. He's pretty sure that this is why, amongst other things, I had the miscarriages. I will be having a face-to-face consultation in March. Oh, and mustn't forget to add, he said that I'm NOT a hypochondriac lol!!! :lol:

Susie, this is great news. It's good to finally get that validation from a health care professional :)

Sounds like you are in good hands and moving in the right direction addressing all of these things!

Morning all.

I ended up NOT going to rehearsal last night...was all set to go, put on my coat and gloves, then started feeling dizzy and nauseated, so took off the coat and gloves and layed down...started feeling better, so got up and put the coat and gloves on, and started feeling dizzy and weird again, so gave up and just layed on the couch! :lol:

Donna, sorry about the dizziness and nausea (did I spell that right?). I sometimes get that, not sure why. I am thinking liver/gall bladder possibly for me. But it could be any number of things.

Hope it's better today.

Those darn sleeping issues for you! I hope you get them all figured out, and pin down what supplement is doing what/not doing what.

I think I sleep pretty good with the charcoal too, I am noticing. I don't take it every night though.

I asked her how many times per day she goes to know how much mag to tell her to take .... she said FOUR!!! :o She is the most regular person I have ever seen, every meal, straight to the bathroom, and not d.

IMPRESSIVE :lol:

Chloe, I am impressed!

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I think I sleep pretty good with the charcoal too, I am noticing. I don't take it every night though.

Yeah, if my doctor is right and I'm waking up so much because of my liver (and that DOES make sense), then maybe taking the charcoal in the middle of the night when my liver is trying so hard to detox is helping mop up some stuff that's floating around in there, and thereby taking some of the stress off.

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donna,

do you think it was the b-12 shot that got you all dizzy, maybe you should only have one a week.

On the poop question i go 1-2 times a day now on the candida diet, before it was like 1 times a day or efery other day, before gluten free it was like once a week if not longer lol.

I am so tired of snow, woke up to snow, but i guess i better make the most of it and go play in the snow with my dtr, i need the exercise lol

paula


gluten, casein and soy free

on low carb/low sugar diet

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do you think it was the b-12 shot that got you all dizzy, maybe you should only have one a week.

Yeah, I thought of this. It didn't seem to make me hyper, but maybe this is how it manifests itself. I'll have to keep track of this.

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Hi everyone. It's been a long time since I've been around, but wanted to check in. Pretty much status quo here. I'm just waiting for March when we can try to get pregnant again.

Amen, sisters! ... then if they DO provide the services you paid for, you must pay again- deductible and copays. It's utterly crooked, evil, and wrong. People are dying everyday because of this, right here in America.

I was skimming through and had to comment on this. I couldn't agree more. My insurance company denied my claim for the heavy metal chelation, thyroid testing and everything else that was done to get me well. They said 'Aetna considers laboratory testing medically necessary for heavy metal poisoning for members with specific signs and symptoms of heavy metal toxicity and/or a history of likely exposure to heavy metals. Aetna does not consider screening for heavy metal poisoning medically necessary for members with only vague, ill-defined symptoms (e.g., fatigue, dysphoria, malaise, and vague pain) and no history of likely heavy metal exposure. No clinical records were submitted documenting a coverable condition.) They also mentioned something about Genova Diagnostics test panels as being 'experimental and investigational'. They said there's no evidence that they affect the management of afflicted individuals. <_< Welllll all of this is what FINALLY helped me. This same insurance company has spent tons o' $$$ on other things that never helped me. So it's just an illusion of healthcare. If they admitted that the amalgam fillings in my mouth were exposure to heavy metals I guess that would open a whole can of worms they aren't willing to admit. It infuriates me. So many of us go for so long suffering just 'cause no one wants to admit the reality of the situation. Sorry I'm done with my rant. I'm off to try and catch up a little.


Ami

Hypothyroid - diagnosed early 1999

Negative blood work for Celiac 12/05

Gluten free since 12/05

Tested positive for heavy metal toxicity, low functioning thyroid (even while taking Armour), hormone imbalance & adrenal fatigue 9/07

Started chelation for heavy metals began new medication/supplements to balance thyroid, hormones and adrenals 9/07

Enterolab Results:

Myself - positive IgA: 11

HLA-DQ 2,3 (Subtype 2,7)

11 yr old son - positive IgA: 11

HLA-DQ 2,1 (Subtype 2,6)

8 yr old son - negative

HLA-DQ 3,1 (Subtype 7,6)

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Mia,

It's always good to see an update from you. Sorry about the sonogram! :o

On the bathroom question......Dr E just asked me about that since I've been having abdominal pain. I go mostly 1x a day, sometimes 2x and sometimes every other day. I know for detoxing the bm's need to be more regular......like Chloe. :D

Carla,

That is great that Chloe doesn't have any elimination problems. They say that if your bowels are working properly that you should go the number of times you eat day. Of course, most of your mainline doc's think if you go more than once a day, it's not good.

My tummy is doing better, thankfully. It still hurts at times but it's not as constant as it was. :) I just wish I knew anatomy better so I could figure out what may be bothering me around my ribcage. I'm thinking it's my stomach. I'm going to skip breakfast again today and see how this morning goes versus how the afternoon goes, after I eat lunch. Seems the stomach area pain is worse within a couple hours after I eat. :huh:

Donna,

Dizzy and nausea are scary! I'm glad you stayed home. I hope you're feeling better this morning. I get dizzy spells more frequently but for me I think it's the metals. I can be sitting in my chair at the computer and the children will come move it and it will make me feel sick. <_<

Susie,

Good news on the consult! :D


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 was skimming through and had to comment on this. I couldn't agree more. My insurance company denied my claim for the heavy metal chelation, thyroid testing and everything else that was done to get me well.

Ami,

I'm not the least bit surprised about this. :angry:

My hubby and I filed taxes last night and he was wondering if we could file the treatments we had done this summer. I told him probably not because it was alternative. I don't know if the IRS works like the insurance companies but I didn't really want to mess with it.....besides we don't own a home so we wouldn't qualify for the itemized deductions anyway.


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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:

My hubby and I filed taxes last night and he was wondering if we could file the treatments we had done this summer. I told him probably not because it was alternative. I don't know if the IRS works like the insurance companies but I didn't really want to mess with it.....besides we don't own a home so we wouldn't qualify for the itemized deductions anyway.

That is one reason why im not sure to clain the enterolab cost, i dont wont the irs to come back and audit me for it lol. And i wanted to say lucky u for already filing, ughh we will have to wait til february to file, with how slow we get our paperworks and forms.

paula


gluten, casein and soy free

on low carb/low sugar diet

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IMPRESSIVE :lol:

Chloe, I am impressed!

Impressive till you take her out to eat and have to wait for her to get done before you can leave, LOL. She's ALWAYS been like that!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Kassandra-

good new on getting the line removed. I hope you enjoyed your shower.

Ok bathroom question for everyone- does everyone go everyday? Just curious.

Yes--my shower was GREAT! :D:P

I go anywhere from 1-6 times a day. It really varies.

Chloe is on Cowden .... I asked her how many times per day she goes to know how much mag to tell her to take .... she said FOUR!!! :o She is the most regular person I have ever seen, every meal, straight to the bathroom, and not d.

LOL! That used to be me! I never used to have issues, except a lot of times it was D. The only real problem it caused was my family used to think I was anorexic! :o:lol:

Impressive till you take her out to eat and have to wait for her to get done before you can leave, LOL. She's ALWAYS been like that!

LOL!!!

Susie,

That's great about your appt with Dr. P.

Donna,

I ordered that 10 minute pilates DVD thing I talked about the other day, last night on Amazon! I can't wait to get it and start really working out since my PICC line is gone!

Everyone,

So I have been taking Ambien every night but only a half of one...so it's about 2.5 mg. Well, I decided I wanted to start sleeping from 9-9 so I took it last night at 10, instead of almost 12 and I just woke up about 20 minutes ago! :o I am so glad I slept well.

My uncle told me that it only lasts about 4 hours, so when I woke up at about 4 am I thought I wouldn't fall asleep again, but I did! :D


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Yay on a good nights sleep Kassandra! :D


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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At home I have the whole Medical deduction booklet printed from the IRS website and things like Chiropractor and acupuncture were covered. I don't think it went into detail as far as chelation therapies and stuff. I can look it up tonight.

What kind of vit C and Mag do you all take to keep "things moving?" Maybe this is what I need. And what brands.

Thanks!

April

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Hi all, about amalgam: it is officially forbidden here in Norway the first of january 2008. The new rules were passed on Dec 21th so many dentists did not get the news until they returned from holidays after new year on january 2nd.....

I had mine removed in the early 90's , started in the late 80's as I always got progressively more tired after each new one, started noticing it when I was 13.

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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Hi all, about amalgam: it is officially forbidden here in Norway the first of january 2008. The new rules were passed on Dec 21th so many dentists did not get the news until they returned from holidays after new year on january 2nd.....

Gosh! Wish our officials would get a clue here, lol!!! Are you feeling better since having them out, and did you do any chelation to remove metals?

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Impressive till you take her out to eat and have to wait for her to get done before you can leave, LOL. She's ALWAYS been like that!

:lol:

Well, very impressive to someone who had up to a week or longer transit time :o

What kind of vit C and Mag do you all take to keep "things moving?" Maybe this is what I need. And what brands.

April, Not sure about the type or brand of Vit C, but I can attest magnesium is great for getting things, and keeping things, moving.

When I did take it I used the Mag Citrate form.

Hi all, about amalgam: it is officially forbidden here in Norway the first of january 2008. The new rules were passed on Dec 21th so many dentists did not get the news until they returned from holidays after new year on january 2nd.....

I had mine removed in the early 90's , started in the late 80's as I always got progressively more tired after each new one, started noticing it when I was 13.

nora

Nora, thanks for this announcement. It's great news that people are finally getting it about amalgams and the dangers of mercury, hopefully changes like this will continue to be made.

A question to pose to all of you, about how much do you all spend on supplement protocols a month (not meds)?? I know it's kind of a personal question, and depends on what you are taking and dosing, but I am trying to figure a ball park budget.

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Julie,

As far as money on supps....olive leaf is about $30, and probiotics are about $43....so by the time you add in tax, s+h, etc. maybe about $90 a month. It's not that bad. But, it also depends on whether or not I need 1 or 2 theralac a day. If I need 2 a day (I don't know yet because I haven't started taking it) then it will be about $130 a month. Supplements so far are the least of our worries! LOL! It's the almost $600 Mepron we're freaking out about. ;)


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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A question to pose to all of you, about how much do you all spend on supplement protocols a month (not meds)?? I know it's kind of a personal question, and depends on what you are taking and dosing, but I am trying to figure a ball park budget.

If we took everything originally needed it would have been $400 a month approx. We've got it down to a hopeful approx of $200 a month, but in reality we can't afford that either. We have to stay on chlorella which is around $70 month and the fish oil which is around $40. The other stuff we have been trying to keep up with on reduced amounts.


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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If we took everything originally needed it would have been $400 a month approx.

Andrea, is this per person? Or the whole family's monthly cost?

A side note on chlorella, my body HATED it! I am so glad I didn't end up ordering some and taking it before I got it checked.

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Kassandra,

I'm sorry about your brother, but very glad that he's doing well at the facility! :)

Nyxie,

I'm so excited for you that you're getting to see Dr. H!

Susie,

I'll go anywhere from 3-5 days. :phe34r: The ionic mag just started to get me going once a day, but then I cheated and had casein and got bad C again. :ph34r:

April,

Congratulations on your appointment with the LLMD!

Everyone,

I had another EAV appointment today. We covered, again, a lot of ground. This time copper and mercury tested normal (and copper was bioavaiable), but aluminum and nickel came back high. H. pylori also went away, but I think it's just that my body's decided other things are more important now. Babesia showed up this time. :o As well as mycoplasma for arthritis and pneumonia.

I also started on the humaworm yesterday and nothing has happened yet. :ph34r:

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Julie,

I spend a TON on supplements. I'm up there with Andrea, maybe even MORE. I don't have to buy all of them each month though.

The ones I have to buy often:

Chlorella: approx $36 for 300 tablets...lasts about a month. I was taking a really good liquid kind that was $25 PER WEEK!

Liposomal Glutathione: about $30 I think, and I have to buy that twice a month

ALA: about $25 a month

Magnesium: I think around $30-40 per month (I get liquid that comes in vials)

CoQ10: Don't have to buy often, can't remember how much it is

Molybdenum: about $25 and lasts at least a month

L-Carnitine: don't know

Oregano Oil gel caps: um, don't remember but I rotate this with caprylic acid...the oil I got at Whole Foods and probably was around $13, the caprylic acid is probably around $25-$30.

I take a multivitamin when I remember (haven't been taking it for about a week now)...it's expense...$30 or $40 but lasts a while. I sometimes take a liquid vitamin called IntraMax...that's hugely expensive at $75 per bottle, that only lasts a couple of weeks if I take the amount BioSET says my body wants. :(

Neurotransmitter stuff: well, I spent $250 on my last order and that will last about two months I think

I think I take more than this but I can't remember them all, lol.

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Andrea, is this per person? Or the whole family's monthly cost?

That's the whole family. It doesn't include multi's and calcium supp's 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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Donna,

What is COQ-10 for? All I remember is my LLMD's PA told me NOT to take it. LOL! I don't know what it's for?


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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