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Omg...i Might Be On To Something


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#31786 confusedks

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Posted 20 August 2008 - 12:07 AM

I have another update. :)

My hematologist called and my ferritin is at 20. He wants me to see this new Dr at UCLA still, and then just run everything by him to see what he thinks because he knows my case really well. Depending on how heavy my period is in the next couple weeks, the ferritin should last for about 1-2 months...then it goes down to 1-3. :rolleyes:

And, some good news, I have really been feeling better. I don't know what is working, but I don't really care! :lol: I have had some pretty decent days which is SO nice! :P I'm sure Dr H will be happy to hear about the progress, on Sunday. :)
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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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#31787 confused

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    Just cause i cant have gluten doesnt mean im dying

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Posted 20 August 2008 - 01:51 AM

It is with great sadness that I have to say that I won't be able to get my teeth done for 2-3 years. :( :( We have another obligation (bill) we need to tend to and we are going to work on some other bills next year. We'll stay on the toxin binders so I'm thinking that will help keep me from getting worse. We've canceled our ART/ASYRA and won't be seeing Dr E for that long either.

I'll still be here reading along and contributing when I can though.


Im so sorry andrea. But maybe this will be a good thing. Im sure it will take me that long to get going on taking mine out. We can go threw it together.

So I'm pretty sure that sulfur/sulfites are one of the main contributers to my constipation issues. <_<

...and then oxaltes seem to have the opposite effect..... loose stools or D.

Maybe this is why I was regular while eating all that chocolate ice cream?? :huh:

Dairy = sulfur
Chocolate = oxalates

For me dairy is usually causing constipation and high oxalates (chocolate) cause loose stools and weight loss.

Maybe they were canceling each other out in this case??


Im thinking you need to go back to chocolate ice cream lol.

I cleaned my grandma's house yesterday with my mom. It only took about 9 and a half hours. :blink: That was just my room, living room, kitchen and bathroom. We were so tired last night. I haven't worked that hard since I got sick.

Is anyone watching the olympics?


That isnt that long lol

Yes we are watching them. We watch lots of it together as a family, the kids love it.



Everyone,
We eneded up getting food poisioning. Well my hubby, two ofour boys and me. The only thing i could figure it out was the hamburger. It was terrible. But im feeling better, hence why im posting at 3:45 am lol

paula
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gluten, casein and soy free
on low carb/low sugar diet

#31788 CarlaB

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Posted 20 August 2008 - 04:01 AM

Hi, I've been busy, just wanted to say hi and that I'm skimming the posts. :)

Kassandra, I think it's the ferritin. :) Maybe you'll beat down the babs enough to keep the ferritin. :)

First day of school. I hate it when the kids go back .... I miss homeschooling, especially now that I'm starting to feel better.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#31789 dlp252

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Posted 20 August 2008 - 05:24 AM

Yeah, I'm watching the olympics...pretty exciting this year!

Kassandra,
YAY!!!! Glad you are having some good days!

Paula,
Sorry you got food poisoning! Yikes!

Lisa,
:o Wow, 9 hours. I shudder to think how long it would take to clean my place and I only have 3 rooms plus a bathroom, lol. It's probably better that she didn't use spray...that would probably actually make you worse. :unsure:
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#31790 susieg_1

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Posted 20 August 2008 - 05:45 AM

Today I rode on the back of my FIL's Harley. :D When I got off, I could feel all my lymph nodes. Seems it did a better job than my rebounder.

My Uncle in law has leukemia. He would ride his motorcycle and for years did fine with it (over 10 years). Then he got a van and within a couple years was in need of a bone marrow transplant. He started riding his motorcycle again and all his numbers have come down to a better range. :)

My FIL said that he'd take me on a weekly ride, that I was his science experiment. LOL He said he also feels better after he goes for a ride. He gets what I think is peripheral neuropathy in his arm, and has some leg pain that I don't know much about.

So, ha, now the other threads will talk about all the crazy OMG'ers going out to get motorcycles for healing. :lol: :lol: :lol: :lol: Seriously, though, it stirred up toxins ... I took some cholestyramine and extra glutathione to help.

I'll be gone a couple days, driving my grandmother back to NC (six hour drive). I'll be back Tues. night.

I used to take Quercitin for seasonal allergies. It helped a lot.


What a cool idea, I have been avoiding riding the Harley with my fiance because of such severe joint pain, but now that my pain is gone most of the time I think I will try some experimenting myself. Of course I will have to wait for fiance to heal from hernia surgery.
thanks for the "crazy motorcycle healing" tip, add me to the list of crazies
:P
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Self dx celiac disease
Gluten free since July 2007
Clinical dx celiac disease November 2007
Self-dx Lyme disease May 2008
Lyme confirmed positive Western Blot May 2008

#31791 AndreaB

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Posted 20 August 2008 - 07:40 AM

And, some good news, I have really been feeling better. I don't know what is working, but I don't really care! :lol: I have had some pretty decent days which is SO nice! :P I'm sure Dr H will be happy to hear about the progress, on Sunday. :)

Great news! :D

Im so sorry andrea. But maybe this will be a good thing. Im sure it will take me that long to get going on taking mine out. We can go threw it together.

Thanks. :) It's nice to know I won't be all alone. :D It seems like everyone will be either well on the way to being recovered or recovered by then.

I'm ok with it overall, as much as I was looking forward to getting it done. If I wait 2 years we'll at least be out from a little bit of debt, instead of continuing to max credit out. We still have to buy the toxin binders though and that is expensive enough.

Food poisoning! :o That's not good. Hope everyone is feeling better now.

First day of school. I hate it when the kids go back .... I miss homeschooling, especially now that I'm starting to feel better.

School already! :o I just asked my youngest step son when he starts and it's not til the 3rd. His senior year.

I got the books yesterday so I'll be starting M on 1st grade on Monday. It will be busy with 2 in homeschooling now, esp with trying to do 2 years in 1 for T. So far T loves this curriculum much better than the old one. :)
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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.


#31792 mftnchn

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Posted 20 August 2008 - 08:04 AM

Interesting about the motorcycle, that is our means of transportation when I am at "home" in China. I am just the rider and don't go that often, my DH often does errands for me by himself. I do notice a lot of aching when I go and stiffness, just figured it was the roughness and thin seat.

Carla and Kassandra when you get sweats from the babs, do you also feel very hot at the time you are sweating? Or is a just noticing yourself being wet without a sensation of heat?

Vitamin D update: The lab also thinks it is likely an error and so I have to go in just a few minutes to have the blood re-drawn.

Sherry
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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

#31793 CarlaB

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Posted 20 August 2008 - 08:20 AM

Ha, I guess it depends on where the pain is!!

When I get the sweats I feel hot. I kick all the covers off, check to see if the A/C is on, complain about how hot is is, dry off, then wake up a little while later freezing, LOL. Sometimes I would wake up at the end of it and just be wet.

Hey, susie, when you do go on the motorcycle, keep us posted. :) Also take some toxin binders.

So, I've been off the meds and on herbs for over a week now. I'm feeling better in general, but the air hunger is getting bad. I don't think the Malarone/Lariam/Enula/Art keeps it in check as well as the Mepron.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#31794 dlp252

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Posted 20 August 2008 - 09:08 AM

OMGosh...destructor kamikaze squirrell is back, lol! :lol: I just watched him climb up the downspout and then jump from that to the bird feeder (which is about 2 feet away!). Silly squirrell, lol. Ooh, apparently the bird ganged up on him and he jumped down to the ground, lol.

:lol:

I got to get out of this condo! :lol:
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#31795 nora_n

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Posted 20 August 2008 - 11:35 AM

Here is another finding on TNF-alpha-308 (a cytokine) which is called TNF2 in short:
http://www.ncbi.nlm..../pubmed/8814255 but it aslo says parasites....
Now I posted another pubmed link the ather day, about TNF2 being one of the other causes of celiac, since they had so many without DQ2 or 8 in that article who were diagosed celiac, but they were positive for TNF2....when they want to prove the gene tests are fine, they write that other genes than DW2 or 8 exclude celiac, I have seen several of them, and when they look for the missing pieces, suddenly they dig up the non-DQ2 or 8 celiacs... I see a plot.
In addition, there is this MYO9B thing or what it is called.

nora
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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)

#31796 AndreaB

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Posted 20 August 2008 - 01:06 PM

I got to get out of this condo! :lol:

:lol: :lol:



Nora,

I didn't read the article, but it sounds interested, albeit on the confusing side.
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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.


#31797 confusedks

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Posted 20 August 2008 - 04:26 PM

Carla and Kassandra when you get sweats from the babs, do you also feel very hot at the time you are sweating? Or is a just noticing yourself being wet without a sensation of heat?


Yes I feel VERY hot! I too complain about the heat, etc. And I sweat...you can see it.
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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

#31798 ShadowSwallow

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Posted 20 August 2008 - 06:11 PM

Kassandra,
Glad to hear you're having some decent days!

Andrea,
Sorry about the delay on your amalgam removal. :(


Birdy
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#31799 mftnchn

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Posted 20 August 2008 - 09:01 PM

When I get the sweats I feel hot. I kick all the covers off, check to see if the A/C is on, complain about how hot is is, dry off, then wake up a little while later freezing, LOL. Sometimes I would wake up at the end of it and just be wet.

That's pretty much what I am feeling a bit more lately. Yours gets worse when the treatment is working?

Sherry
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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

#31800 aprilh

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Posted 21 August 2008 - 05:36 AM

Hi Everyone....

Andrea - sorry about not being able to see the dentist. Hope you can get there soon though.


Kassandra- Glad you are feeling better. Sounds like the NAET is helping!
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