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Omg...i Might Be On To Something

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel.

I started to work on something more private a couple of days ago. But then i had some other issues in my life that i had to work on, but now im going to go work on that project again lol.

I know for me, if i cant share stuff, i will explode. even yesterday something was going on with my life and i was like ughh what rachel recommend or april or everyone else in this thread. But of course the board was down, so i couldnt even post it if wanted to lol.

paula

Paula...I felt the same way! I do need to share stuff and bounce it off of others....or just put it out there. Also, when I write about things it "sticks" with me.....so I'm actually able to retain alot of the scientificness much better if I've understood enough that I can write it out. If I write it down....I'm more likely to remember it.

I have a new focus....actually its an older focus (as in over 2,000 pages ago) that is now better understood. Its something for me to start on right now....before I get my genetic test results back. I also got my test results back from France. Anyone remember the urine I shipped off awhile back?? I had totally forgot about it!! :blink:

I was really wanting to write out my thoughts!!

Anyways, thanks for setting something up Paula! :)

I think it will be good for everyone. Right now I'm feeling as if I want the exact opposite of what I've been doing.....so a big change from putting it all out there for the whole world...to just sharing with a very small group that I know I can trust. It feels good to me. :)

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confused Community Regular
confused
Posted

I have to write things down to, i think it has to do with my photegenic memory. Of course it isnt as good as it was years ago. In college, i would be taking an test and i would be like hey the answer is on page ? and on the left or right side and id see the answer in my head. I can still do that from time to time but i need more time doing it lol.

paula

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I have to write things down to, i think it has to do with my photegenic memory. Of course it isnt as good as it was years ago. In college, i would be taking an test and i would be like hey the answer is on page ? and on the left or right side and id see the answer in my head. I can still do that from time to time but i need more time doing it lol.

paula

Paula, I know exactly what you mean about the photogenic memory. I've read so many websites over the last few years but when I'm looking for certain info. I can picture the info....where it was written on the page and what the page looked like. That helps me find the page amongst hundreds of bookmarked sites. I can just "see" it in my mind. :)

Good thing for that or I'd never find anything!

mltjq Newbie
mltjq
Posted

rachel-

I found that post with all the links. Thankyou. I wish I could go on vacation away from kids for a week and do nothing but read this stuff!

Thank you again!!!!!!!!!!

Judyin Philly Enthusiast
Judyin Philly
Posted

Letter to Dr. Fine,--just heard the first link didn't work not sure why as I could get it :blink:

It was different than what is here. Oye :ph34r:

https://www.celiac.com/gluten-free/index.ph...f=6&t=53381

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Hi Guys,

Just a fast drop in.

If any of you were interested in signing the letter to Dr. Fine, I will put the link to that thread here as there are so many readers.

Gentleheart and others have worked hard on this letter so if it's something you agree with the wording on and want you name added you can PM her from this link

https://www.celiac.com/gluten-free/index.ph...ic=53381&hl=

Rachel, hope it's ok to post it here. This link didn't look like the other I posted so hope it's correct.

Afraid if I test it I'll lose the post. ;)

Thanks Judy

Thanks Judy.

I'll pass the info. onto some of the other OMG'ers in case anyone else is interested in signing. :)

Judyin Philly Enthusiast
Judyin Philly
Posted
Thanks Judy.

I'll pass the info. onto some of the other OMG'ers in case anyone else is interested in signing. :)

Thanks so much Rachel

hope your doing well

Judy

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
rachel-

I found that post with all the links. Thankyou. I wish I could go on vacation away from kids for a week and do nothing but read this stuff!

Thank you again!!!!!!!!!!

No problem. Let me know if you have any other questions. Happy reading! :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Thanks so much Rachel

hope your doing well

Judy

I am Judy....and enjoying the holiday season.

Hope you are doing well also. :)

Ken70 Apprentice
Ken70
Posted

Hey Rachel

Thought this link might be interesting to you. It talks alot about detox pathways.

Open Original Shared Link

AndreaB Contributor
AndreaB
Posted

Thanks for the link Ken. I've bookmarked it.

rinne Apprentice
rinne
Posted

Hello. :)

About three weeks ago I started the SCD, I am having real success with it.

The reason I started was that a friend, recently diagnosed with a wheat allergy, asked me for some recipes and I went to town with my amaranth, rice, tapioca, etc. flours and baked up all sorts of goodies, then I ate all sort of goodies :lol: Not really, but I did eat some every day for that week and by the end of it I felt like I was way back in my illness, it was really obvious that it was the grain, grain of any kind.

I knew that I just didn't want to know that.

At that point I had to admit that every time I felt better in the past three years it was when I grains free but I was also confused because sometimes I would feel bad but I hadn't eaten grains at all. :huh: Now I see a connection with the bananas I would eat, bananas that were still very starchy.

I could cry now just out of gratitude to have found this diet, I can eat again and enjoy eating, I have made bread that is not only edible but delicious, Sandwiches! Home made goat yogurt cream cheese with tomatoes and avocados..... and you can make yogurt with heavy cream so that you can whip it just like whip cream except it will have tartness to it.

So yesterday I went and bought the second Grain Free Gourmet cookbook by Jenny and Jodi and I am reading along and I read that the basics of the SCD were used in the early part of the twentieth century to treat celiac. Dr.Haas developed the Original SCD and over 98% of the children treated by him for celiac (561) showed a positive response and many recovered, as in they went on to eat wheat.

In the early 1950's a theory was proposed, based on the flour shortages of the second world war and improvements seen in those with celiac, that gluten and only gluten was the culprit and from that point on the medical profession embraced that theory. What this means is that people get better but don't completely heal and so are always vulnerable to relapses.

There is lots more but I trust if you find this interesting you will investigate yourself.

I have known most of my life that wheat was just not good for me and I am not looking for a way to live that includes it but I realize now that I am no longer willing to accept the conventional view of celiac.

I am going to recover. B)

:wub:

Well, I just read back and gather that everyone has departed, :huh::lol:

Perhaps it is only natural that this thread winds down, perhaps for a while, perhaps for longer, certainly I haven't been here to do my part. :ph34r:

I am so grateful, I don't know if you really understand how deeply I feel you have been part of my healing and I am healing. We made a circle here and the love, humor and support we have shared has been a blessing.

Thanks to all but most especially to you Rachel, there never would have been a Rachelville without you!!!

:wub: :wub: :wub: :wub: :wub: :wub: :wub:

  • 3 weeks later...
mslee Apprentice
mslee
Posted

Hi Guys

I have been gone a while dealing with life & lupus stuff. Just wanted to say Hello! and thank you for all the helpful info posted here!

I know it can start to weigh on ya, posting personal info online. I recently killed my myspace ...only to move in & update my care2...it's a little addictive! :lol:

Learning to adjust to this diet, going strict SCD very soon...so maybe see ya over in that thread ;)

Rachel, thanks so much all the info about B12, vit. absorption, mercury/MCT has been very informative & helpful.

Also thanks all for info leading to understanding that grains are a major problem for me.

Thank So Much!!!!

Hope everyone is doing well & healing!

peace & good wishes

~a

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      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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