Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Rachel--24 Collaborator
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. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
confused Community Regular

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
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

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

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
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
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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
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
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

Hey Rachel

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

Open Original Shared Link

AndreaB Contributor

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

rinne Apprentice

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

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

    2. - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

    3. - knitty kitty replied to plumbago's topic in Related Issues & Disorders
      3

      Anyone else with very high HDL?

    4. - Nicbent35 replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

    5. - trents replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,889
    • Most Online (within 30 mins)
      7,748

    Missymid
    Newest Member
    Missymid
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
    • Wheatwacked
      Hi @Nicbent35,             When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration.       With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing.  In the meantime, though, continue on GFD.  Her health is more important than convincing a doctor.  Bring videos of her behaviors if you can.  Even if the blood tests and biopsy prove negative, that is part of the diagnosis process for NCGS and later when she is recovered you can always do a Gluten Challenge.      This is an important time in her developement.  Celiac Disease causes malabsorption syndrome, leading to malnutrition, regardles of what she eats.  Though NCGS may not cause malabsorption, it will affect food choices which can lead to malnutrition.  There may be benifits that an official diagnosis may have, but they don't trump a healthy child.      Get her healthy, then worry about validation later.  Celiac Disease is difficult to diagnosed, especially in children, because doctors look for antibodies in the blood and young children have immature immune systems.  Also you don't mention any gastrologic symtoms and celiac disease is traditionally considered gastrolic only.  Not true.  There are over 200 symptom that celiac disease and the accompaning malnutrion mimics or causes that often causes misdiagnosis and delay in recovery. While at the doctors, ask them about vitamin D deficiency and Iodine deficiency in particular. Milk being the primary source of iodine in the diet, but concerns exist regarding the lower iodine content in organic milk and reduced milk consumption in certain demographics.  Vitamin D deficiency is 40% of the industrialized population and a recent study in the Great Britain showed a wopping 60%, beaten only by some areas of Canada at 70%. And B1, B2, B3, B5 and B6.  Deficiencies in these are common in untreated Celiac Disease and they affect energy production. Are You Confused About Your Celiac Disease Lab Results?
    • knitty kitty
      @plumbago, Are you taking any folate with your B12?   Folate helps regulate HDL levels.  You may try taking a methylfolate supplement with your B12.   If there's a folate deficiency because you aren't absorbing sufficient folate, or have the MThF mutation causing a functional folate deficiency (methylfolate trap), you can have a functional B12 deficiency despite supplementing, resulting in HDL levels not getting regulated, but running high or low.   Pushing the envelope in explanations, too. P. S. Are you taking a B Complex?  Folate and B12 Cobalamine need enzymes made from B6 Pyridoxine's interaction with Thiamine, and B2 Riboflavin's interaction with Thiamine.  Is your Vitamin D low?
    • Nicbent35
      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
    • trents
      Welcome to the forum, @Nicbent35! There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet. There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease. Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.
×
×
  • Create New...