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Rachel--24

Omg...i Might Be On To Something

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The restoration work from the water damage is still underway. I cant even believe all of the measures being taken to prevent mold growth from occuring! :blink:

I'm really pleased about it though.....even though we will not be able to have a Xmas tree here this year. :(

They finally took out the fans a few hours ago....its going to take at least a month for the repairs to get done. The water damage wasnt extreme.....like they said....on a scale of 1-10 we were only a 1.

Even with that little damage they've done ALOT to prevent mold.....the same stuff is going on with the neighbors. They've got worse damage and are using a different restoration company.....but everything is being done to ensure that mold does not become an issue. The woman that lives there is already sick (she wears a mask due to sensitivities) so I hope they do a really good job for her.

My mom said that we could have easily just let everything dry and not done anything about it since there wasnt much damage. It made us both think about how many times people get leaks or water damage and end up with mold in the walls, under carpet, etc. :o

For this I definately dont mind the inconvenience of having no living room for however long it takes. I dont know about my mom though......I dont think she's too happy with having her couch in the entryway. :lol:


Rachel

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Couches in entryways are definately an inconvenience. Not nearly as bad though, if mold had grown to be a problem.


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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Couches in entryways are definately an inconvenience. Not nearly as bad though, if mold had grown to be a problem.

Yup.....you will hear NO complaints from me....and actually I kind of like being greeted by the COUCH as soon as I walk in the door. :D I think its pretty convenient...maybe we should keep it there permanantly. :P:lol:


Rachel

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Yup.....you will hear NO complaints from me....and actually I kind of like being greeted by the COUCH as soon as I walk in the door. :D I think its pretty convenient...maybe we should keep it there permanantly. :P:lol:

Makes it easier to curl up and take a nap if you are so tired you can barely get through the door too, right? :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 a freakin brain cyst... :huh:

this sucks

Pineal cyst

Discussion: Pineal gland cystic lesions are seen in 21-41% on autopsy whereas on MR imaging, they are seen in 1-4% cases. Pineal gland lesions may be divided into four basic categories:

* Germ cell tumors

* Pineal parenchymal tumors

* Metastases

* Cysts

Pineal cysts occur in all ages, more predominant in the fourth decade. They may be classified as neoplastic or benign as lined by glial tissue, ependymal, or surrounded by the normal texture of parenchymal tissue.

Majority of the times, pineal cysts are asymptomatic. Pineal cysts are clinically important for 2 reasons: (1) They may enlarge over time due to intracystic hemorrhage / cyst fluid, and/or (2) May cause mass effect on adjacent structures. Mass effect on mid-brain may present with Perinaud's syndrome whereas mass effect on cerebral aqueduct causes hydrocephalus. Sudden death may also be seen due to acute hydrocephalus or intracystic hemorrhage, also called as pineal apoplexy.

If the cyst shows growth on successive MR images or progression of the clinical symptoms is observed, surgery is indicated.

Lots of people online with pineal cysts complain of head pressure like a vice, eye pain, neck pain, jaw problems, severe headaches that feel like fluid build up that wont let up, brain fog, fatigue, nervousness, anxiety, high blood pressure making it worse... etc

Thats how I feel.

I talked to my dad, cause I got freaked out. Hes a doctor, so usually I dont talk to him about things, but he said that I should get a second opinion, and go see an endocrinologist, and talk to the radiologist.

Im just scared that I wont have enough time my insurance ends when I graduate this quater in mid december.

Im not going to just go back on the pill if I don't get my period... that means something is WRONG with my hormones, not having a period after being regular your whole life is bull, sorry but it is. Im supposed to be studying right now but all I can think about is health stuff, and the brain cyst.

Just venting you guys, Im sure Ill feel better later, its just the initial shock, coupled with lack of answers and vagary, you know?


(2000) dx pcos, mild elevated free testosterone

(May,2004) exposure to endocrine disrupting chemicals

(Sep, 2004) elevated thyroid antibodies

(Feb, 2005) dx hashimotos, euthyroid

(Jan, 2006) dx vasomotor rhinitis

mucus, swelling, and head pressure since consistent since 2004

(July 2006-Jan 2007) 3 root canals, porcelain crowns, 4 white fillings

(Fed 2007) Irregular periods

Headaches worsen pain hard to function 8 or 9 on a scale of 1-10

(May 2007) painful nodule.

(July 2007) start YAZ

September 2007, pain free, since 3 years.

(Sep 2008) off Yaz

(Dec 08) pineal cyst 4mm dx

on topomax for migraines 50mg

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Ok....I'm not sure if you are still reading mltjq.....but now that the board seems to be functioning again I will attempt to repost some of the info. that you requested. :)

Sorry its taken this long.

I do feel that the methylation cycle is an important piece of the puzzle for many who are dealing with impaired detoxification, heavy metals, bacteria, virus, etc. A properly functioing methylation cycle is necessary for detoxing metals as well as silencing virus and bacteria.

It takes a bit of reading (ok...it takes ALOT of reading) to really understand it but it does begin to make alot of sense once you become familiar with it.

Most of the info. comes from Dr. Amy Yasko and her work with autistic children. I should also add that while many people have had amazing results following this protocol....it is not a proven method. Its still early days for genomics and for this type of treatment....which is based on supporting the mutations found in the methylation cycle. 100% of autistic children who are tested do have mutations in this cycle. I suspect the same would be true for adults who are dealing with similar issues.

These are links to some of the sites which have been most helpful to me.....or just interesting. :)

http://www.dramyyasko.com/Publications/Publications.html

http://Lame Advertisement/p/articles/mi_m0IS...ag=artBody;col1

http://www.heartfixer.com/AMRI-Nutrigenomics.htm

http://www.heartfixer.com/AMRI-Outcomes-No...hyl%20Cycle.htm

http://www.knowyourgenetics.com/Understand...e%20Basics.html

http://phoenix-cfs.org/GSHMethylDeplTheoryJuly07.htm

http://discovermagazine.com/2007/apr/autis...t:int=4&-C=

http://www.nutritional-healing.com.au/cont...igue%20Syndrome

I read through Yasko's book "Genetic Bypass" and next I'll be reading "The Puzzle of Autism".

I have a couple DVD's (includes 4 presentations by Yasko in 2005) which I've watched several times now (yes....I'm very nerdy like that :P ). The DVD's and the book is what really helped me understand everything. I wouldnt recommend them for anyone who is not purchasing the genetic tests though.....since this is what all of the material covers. Without the genetics the rest is pretty useless.

I didnt purchase the book or DVD's.....they came with the genetic test at no extra charge. There was enough info. that came with the test kit so that if you review all of it you can gain a pretty good understanding of the genes that are involved in the methylation cycle.

Its not an inexpensive test but in my opinion its definately worth looking into.

Hope this helps. :)


Rachel

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Hi, I'm not caught up :P:lol:

Just driving by, :o Rachel I'm glad to know that whatever watery disaster has befallen you it is under control. :)

Hello to everyone. :)

I have a freakin brain cyst... :huh:

this sucks

No kidding! Hi Christine. :) Truly sorry to hear that you have yet another challenge to deal with, many wishes for your wellness.

Brief news, I gave up my restaurant gratefully after about 4 months, I say that cause I learned so much, mostly that I don't want to do a restaurant. :lol::lol::lol:

I'm doing okay but have taken up the SCD after finally admitting that grains/starches of any sort are an issue.


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 Rinne. :D:wub:

Sorry the restaurant wasn't for you. How are the treats going?

Hope the SCD helps with healing for you. It has helped a lot of people.


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, I would start at very small doses, one at a time and wait at least 2 days before adding in something new.

I started one today, it is just an fruit thing with antioxidants and b-12 and stuff. It actually tasted pretty good lol

Paula {{{{{lots of hugs}}}}}. I'm sorry for your loss. :(

Its definately harder to deal with symptoms (or anything really) when we're going through tough times. Feel better soon.

Thanks rachel,

It isnt really the lose that is hurting, he was 85, it is how i have been treated. I sent andrea the long version lol.

No withdrawls for me because I've been pretty busy still learning the genetic stuff. I'm actually surprised at how much I'm understanding now! I'm on another board and I can actually particiapte now....whereas a few months ago most of it would have been totally over my head. :blink:

I think much of my focus will be on this for awhile...and especially once my results come back. I cant wait!!

I'm starting to understand and piece together alot of the issues that I have and how they're related to my biochemistry.....as well as how they will most likely need to be treated. Right now I'm just learning what I can but I wont really know anything for sure until I get my results.

I did alot of searching to and it is all making sense to me with what is going on with me. I always knew things were worse around my period and now i know for sure it was my hormaones that were making me go crazy.

How much longer for results, stil 5-7 weeks right lol

paula

My MRI showed nothing out of the ordinary.


gluten, casein and soy free

on low carb/low sugar diet

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Hey everyone,

JUst wanted to tell everyone to have a happy thanksgiving early since I won't have access to a computer tomorrow or thursday.

Yes I will be making a turkey, pumpkin pies, persimmon cookies, stuffing and gravy. Yes I will eat some of it and yes I will be telling myself I will never do that again when I probably will.

I am thinking of starting the SCD thing soon, but it's so hard with the holidays and holiday parties.

P.s. don't eat anything I would.

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Rinne, glad to see you. April and I are doing well on SCD, glad you are going to try it.

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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Happy Thanksgiving everyone!

Hi Rinne, glad you figured out you didn't like the restaurant business (but got to try it!). Are you still making Rinne bars?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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[quote name='aprilh' date='Nov 18 2008, 11:37 PM' post='486270

Happy Belated Birthday Sherry! Hope you are doing okay. Post when you can and let us know whats up.


Hip surgeries for chronic pain in glute muscles -1989

Sciatica and hip pain - 1991-1993, diagnosed with fibromyalgia - 1993

Diagnosed with Grave's disease - 1995, radioactive iodine - 1996

Gained 60 lbs., depression, low energy, terrible PMS - 1997-2000, diagnosed with PCOS - 2001

Diagnosed with Endometriosis - 2004

Stopped working from severe dizziness, eye pain and fatigue - Thanksgiving 2006

Diagnosed with Vestibular Neuritis caused by Fibromyalgia - 2007

Gluten free - September 2007

Diagnosed with Lyme, Babesia and possibly Bartonella - June 2008

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Hi Rinne. :D:wub:

Sorry the restaurant wasn't for you. How are the treats going?

Hope the SCD helps with healing for you. It has helped a lot of people.

Hi Andrea, :wub: So nice to find you here, I hope all is well with you and your family. :)

Happy Thanksgiving everyone!

Hi Rinne, glad you figured out you didn't like the restaurant business (but got to try it!). Are you still making Rinne bars?

Hi Carla, nice to see you too. :wub:

I am still working on Rinne bars and developing more recipes, the SCD is taking me down a new path which is very interesting. I have discovered recipes for "breads" I can eat and that is making me very happy. I haven't given up on markekting the bars it is just that I have come to realize that I really can't take on anything as consuming as a full-time business.


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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Rinne, glad to see you. April and I are doing well on SCD, glad you are going to try it.

Sherry

Missed this the first time. :o

Hi Sherry. :) Nice to see you and belated birthday wishes, I hope it was a good one. It is good to know the SCD is working for you and April, how long have you been on it? I just made my first batch of SCD yogurt and am really looking forward to making cheesecake!


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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Thanks, nancy, I checked out the yahoo group and there are documents and charts and everything there in the files, if anyone wants to read up on methylation etc.

I have no such diagnosis, was just thinking others were interested. But I have too much mercury, I know that. So I have to look into all that stuff.

If you have not read here, the other big news is that the biophoton treatment in Germany seems very promising judging by the blogs of those who were there. Theyhave also updated the thread on lymenet.

I might wait until photon treatment is evailable here, or take raibow photon treatment to detox, I am already taking detox footbaths. I had one today and it was very dark and dirty, much more than the first two, the third one was very dark too with black specks.

I take ldn too.

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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If you have not read here, the other big news is that the biophoton treatment in Germany seems very promising judging by the blogs of those who were there. Theyhave also updated the thread on lymenet.

I might wait until photon treatment is evailable here, or take raibow photon treatment to detox, I am already taking detox footbaths. I had one today and it was very dark and dirty, much more than the first two, the third one was very dark too with black specks.

I take ldn too.

nora

Nora-

Thanks for your info also...I have some questions, though. Is the Biophoton treatment one and the same as the Bionic 880 that Carla is/was doing?

By the way, how is Carla doing?

I would love to go to Germany, and would like to go sooner than later, but I need to get a bit stronger. Maybe in the spring.

How do I find out about the detox foot baths? I am a little worried that it may be too much detox at one time for me. Can you regulate for how long and how strong?

Nancy


Hip surgeries for chronic pain in glute muscles -1989

Sciatica and hip pain - 1991-1993, diagnosed with fibromyalgia - 1993

Diagnosed with Grave's disease - 1995, radioactive iodine - 1996

Gained 60 lbs., depression, low energy, terrible PMS - 1997-2000, diagnosed with PCOS - 2001

Diagnosed with Endometriosis - 2004

Stopped working from severe dizziness, eye pain and fatigue - Thanksgiving 2006

Diagnosed with Vestibular Neuritis caused by Fibromyalgia - 2007

Gluten free - September 2007

Diagnosed with Lyme, Babesia and possibly Bartonella - June 2008

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Hi Sherry. :) Nice to see you and belated birthday wishes, I hope it was a good one. It is good to know the SCD is working for you and April, how long have you been on it? I just made my first batch of SCD yogurt and am really looking forward to making cheesecake!

Hi Rinne.

I've been on SCD since mid July. My LLMD put me on after testing (twice) showed that I was not digesting carbs. I discovered the enzymes to complete carb digestion (lactase as is commonly mentioned on this forum, but at least two others too) are made in the villi, and apparently 15 months on gluten-free had not been enough to heal that. I had a dramatic response to SCD. Still progressing, but doing well. I post on the SCD thread regularly.

April started after I did, not sure exactly when. She hasn't been posting much lately, but last she posted, both she AND her son were doing very well on SCD.

I love the goat milk yogurt.

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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Rachel,

I just remembered that I am taking yucca root for the blocked pathways (tested by Dr. E with ART); I'm curious if you have come across that and what it unblocks, since I didn't get much of an explanation about it.

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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Yes, it is what Carla did.

Here are some blogs:

http://www.betterhealthguy.blogspot.com/

http://pathogensoup.blogspot.com/

and there is another one but she blogged only for some days, and she is so much better after treatment now, she posted on lymenet and still posts there.

There are about three threads on it on lymenet, and the long one is still active. Someone posted and complained that the bionic discussions had taken overhand there but I do not agree...

http://flash.Lame Advertisement/scripts/ultimateb...ic;f=1;t=074663 treatment after the bionic

http://flash.Lame Advertisement/scripts/ultimateb...ic;f=1;t=070037 the long bionic thread

Sounds like it also detoxes (better than herbs and supplements etc), and that one herxes much less than on antibiotics.

I personally want to try the rainbow photon for detoxing, there are some close by. Must be much cheaper than the foot baths in the long run. I have no idea if lymies have huge reactions to the foot baths, those on the lyme forum here do not post anything on alternative treatments. They only try antibiotics (if they can get treatment...)

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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Dear Everyone,

I am not sure if I will get the chance to catch up on reading here. I will certainly try! My computer had been having problems for a while, and it turns out spyware was to blame. So much for having protective software! :( The monitor is doing alright now, but still does not work the way it should.

Another complication was my idiot father did not pay the electric bill last week, and around 1pm Wednesday, it was shut off. Not only did this cost more (nearly $1,000 including the reconnection fee), but the stress is the last thing I need! :angry: People are saying I need to just get over when Dad forgot to pay the water bill on the day of my eighth grade graduation party. Three hours prior to guests arriving, it was shut off. If I was still not having to deal with the fallout, I would not care.

Then there is what happened the other weekend. My best friend, her husband, and I were going to get together and play Scattergories. I had to cancel, because I was sick and exhausted. When you have only slept a few hours per night for several weeks, functioning at all is difficult. My best friend was not angry, but my parents chewed me out. They say I never am sick except when I have to go out anywhere, and are trying to make it all about anxiety, as they did when I was a teenager.

I cannot take this anymore! :(:angry: I feel bad on and off all of the time, I just do not talk about it. Before, Mom just acted as if it bored her every time I mentioned not feeling well. She would always be like "You are always sick." I have got to get out of here! If the gluten does not kill me, the stress will!

At least I had a productive appointment with Dr. D the other week. He is having me go back on the other bile salts part of the time. I am not so sure the multi-vitamin is setting well. I am also having pain in my gallbladder area again. :unsure: What if it is a Sphincter of Oddi Dysfunction? Being on the Depo - Provera shot also may cause issues. The reduced bone density may be for good, and I have no idea where I stand on that right now. This is on top of other health concerns it could result in.

I still have not received my Christmas money from Grandad, but hope to soon. That money will go toward the Western Blots to Igenix. I have been studying to get my permit renewed so I can learn how to drive. I am going to try and do a gift wrapping service to make money in the meantime. Hopefully, there will be many customers. We will see! At least now I know why my life has sucked for so long. According to my horoscope, Pluto was in my sign (Sagittarius) since 1995, making everything difficult. Freakin' Pluto! :angry:

Today is Thanksgiving! Happy Turkey Day everyone! Have a good one. I hope to be well enough to go to my grandparents' home later. Cousin Mary and her brood of six are in town! :) They live in Florida, so we rarely see them.

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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Hi Rinne.

I've been on SCD since mid July. My LLMD put me on after testing (twice) showed that I was not digesting carbs. I discovered the enzymes to complete carb digestion (lactase as is commonly mentioned on this forum, but at least two others too) are made in the villi, and apparently 15 months on gluten-free had not been enough to heal that. I had a dramatic response to SCD. Still progressing, but doing well. I post on the SCD thread regularly.

April started after I did, not sure exactly when. She hasn't been posting much lately, but last she posted, both she AND her son were doing very well on SCD.

I love the goat milk yogurt.

Sherry

Hi Sherry, :) thanks for your response, I have found the SCD thread and will post my SCD stuff there!

Hi Jin. :)

Happy Thanksgiving. :)


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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My dr called yesterday, my dh biopsy came back completely positve for DH. I am an diagnosed celiac now and wont have to to an scope or go back on gluten. I am so happy for that.

Happy thanksgiving everyone.

paula


gluten, casein and soy free

on low carb/low sugar diet

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A quick drive by to wish everyone a HAPPY THANKSGIVING!! :)

Its been a busy week at work....havent had much time to post but I will try to catch up later on. Have a great day everyone.

Sherry, yes....I was tested for yucca root and it did not test well.

With the genetics, often there are certain mutations that need to be addressed first and so the treatment is highly individual according to the person's genetic make-up. For example if someone has the CBS C699T mutation...nothing that they do to improve methylation will work until that particular part of it is addressed. It gets really complicated and difficult to know what will work without the genetics.

As Nancy mentioned some people require hydroxyB12 rather than methylB12 and with Yasko this is determined based on genetic results of the COMT and VDR enzymes. The reason is that some people use up methyl groups rapidly (based on their genetics) and some people have more methyl groups available due to slower functioning enzymes. The ones who use up methyl groups rapidly will require more....meaning they will do better with methylB12 and other supplements which add methyl groups. Others, (it looks like I'm probably in this group) will react badly to methylB12 or too many methyl groups because they already have plenty.

The group that I joined focuses totally on the genetics. Everyone posting is following Yasko's protocol. A really knowledgable group.....but since they focus on the genetics as the basis for treatment...with specific tests to guide them....then they dont offer much help without knowing the genetics. I still have to wait a couple months until I get my results.

Alot of people order their doctors data tests through her office and by doing that she keeps all of their results on file (with their genetics) and she provides comments on their test results. She gives her recommendations as far as how to proceed with the treatment, etc.

I probably wont order through her office since insurance is more likely to cover these same tests when my own doctor orders them. So far I've had some coverage with all the labwork so I'll probably just continue to get all testing done with him. Fortunately he's one of the few DAN! doctors who is familiar with Dr. Amy's protocol and he will be able to help me through it. Another board member has my same doctor so I was really excited to read that he does have experience with this protocol...YAY!


Rachel

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Dear Rinne,

It is so nice to see you again! How is business? I assume good. Rinne Bars are likely selling like hotcakes! You know what I would love to do?

I would like to start something like Swiss Colony for Celiacs. Have you seen those beautiful triple and quadruple-tier cakes? They are so beautiful! Celiacs deserve gourmet treats as well! Chocolate-covered pretzels, petit fours, cakes, breads, biscotti, cookies, truffles, sausage, cheeses, and crackers could become a reality for people like us!

Dear Paula,

Congratulations on an official diagnosis! Thank goodness you will not have to return to eating gluten. That would be miserable. Scopes are certainly best avoided. Such diagnostic procedures may be difficult for someone to recover from.

Dear Rachel,

Where may I find more information about the mutation related to the methylation cycle? This is fascinating! I am glad to here your current physician has experience with the treatment already. It is likely a tremendous weight off of your shoulders! We all will be anxious to know how the tests turn out once you do them.

My Primary Care Physician uses Doctor's Data. If only I had insurance! Even then, it may not be covered, though. You know how insurance is. In some ways, not being covered saves me money. Take my parents' plan. It is no better than COBRA. In fact, it actually may be worse. By the time you pay off the required deductible or premium, it is the next year. Obviously, they do this on purpose so you never get any real coverage.

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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