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--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. :)

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
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

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

Celiac.com Sponsor (A8-M):


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

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748
    nursengul
    Newest Member
    nursengul
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...