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--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. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    2. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    3. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    4. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    5. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,421
    • Most Online (within 30 mins)
      7,748
    john rands
    Newest Member
    john rands
    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

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.