Jump to content
  • 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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd posted a topic in Related Issues & Disorders
      0

      Basic metabolic panel results - more flags

    2. - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,318
    • Most Online (within 30 mins)
      7,748

    acurn18
    Newest Member
    acurn18
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.