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

Article Shared By Dietitian Who Doesn't Believe Celiac Exists....


DingoGirl

Recommended Posts

DingoGirl Enthusiast

HI everybody,

 

I haven't posted in AGES here!  [not sure I'm posting this in the right spot?] But this article  - rather, the dietitian who posted it, got me rather agitated. 

 

 

Long long story (which I have just deleted) - but there is a dietitian with whom I am somewhat acquainted (who riles me up! she doesn't believe Celiac exists) who posted this writing (she did not write it) on her FB page last night.  This article makes me quite sad.....the dietitian's intent was to convey to her mainly eating-disorder clients that it is okay to not diet, accept your weight, etc.....but I was smacked in the head with this poor man's untreated (I presume) celiac and slow, horrible death.  HIs daughter wrote the article and i have left a comment today (SusieQ) which may or may not show up yet.

 

Take a look -

xo.

 

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Didn't see your comment. Maybe its not approved yet? Or I missed it?

I'm a little confused. This dietician who doesn't " believe" in Celiac posted this on her website? But the dietitician isn't the author, right? She just re- posted it?

DingoGirl Enthusiast

Yes.....dietitian shared this on Facebook for her patients, but she didn't write it. 

 

My comment not there? hmmm.....maybe takes a while.  Or maybe it was too stupid?  ;)

kareng Grand Master

Yes.....dietitian shared this on Facebook for her patients, but she didn't write it. 

 

My comment not there? hmmm.....maybe takes a while.  Or maybe it was too stupid?  ;)

Did you share this on FB? I thought I saw it earlier.

On the site you link to, there don't appear to be any comments in the last few days.

DingoGirl Enthusiast

I ranted about it on a FB page.....probably showed up in the feed. 

DingoGirl Enthusiast

Karen, I see you found me on there....my rants  ;)  did you see the article that was posted today, on that same site?  OH MY LORD......my ranting goes on there as well.....   :ph34r:

DingoGirl Enthusiast

Now I feel bad.....I am wondering if I should have this post removed?  Didn't know my rants could be traced on FB....and the dietitian's identity known !  What do you think, Kareighnne?

 

Could simply post the article the girl wrote.....

 

I dunno.  Where is Poeter?  Let him decide :)


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Now I feel bad.....I am wondering if I should have this post removed?  Didn't know my rants could be traced on FB....and the dietitian's identity known !  What do you think, Kareighnne?

 

Could simply post the article the girl wrote.....

 

I dunno.  Where is Poeter?  Let him decide :)

I can find them because we are FB friends. Edit/ Change the dietitians name to Beelezbub and it will be harder for people who don't know you to find.

psawyer Proficient

Well, I didn't see anything on FB and I am also a friend. The item linked to is harmless, but does not tie in with this supposed dietitian.

DingoGirl Enthusiast

HI Poeter ! I just re-wrote my whole introductory post. ;) 

 

And, my comment is awaiting moderation.....sadly, I don't think she'll allow it.  was hoping more Celiacs would join in and also comment.  I don't know why but this article,  in connection with the dietitian who posted it (this is most likely the reason - my intense concern about her methods/beliefs as a dietitian) has got me rather riled !   Must head out now.....gorgeous day here.

 

my comment:

 

I am sorry for the loss of your father, and his struggles, this is so terribly sad and this is how Celiacs often die. What SCREAMS OUT at me in your beautifully-written article is his untreated Celiac Disease (“scarred intestines” CAN improve!)….gluten kills Celiacs. Period. Had he followed a strict, gluten-free diet from the time of diagnosis (did he? I am presuming he did not – forgive me if I am in error), his life would have changed dramatically and he would have dropped weight very easily (assuming he didn’t load up on gluten-free snacks). You are Vikings….Celiac is hugely common in Scandinavia (you can get gluten-free Big Macs there!), and it is a *genetic* auto-immune disorder which kills slowly and is truly miserable. One may have it without displaying symptoms for a long, long while….but I would bet every possession and penny I own that you have it too, beautiful one. Please don’t suffer as your father did…it is entirely avoidable. If you are interested in learning more, go to a website such as Celiac.com (check out the topics in the forum) and read up because in this country, where medicine and doctors are controlled by Big Pharma and very income-driven, Celiac is grossly and sadly misdiagnosed…my own diagnosis took decades and I verged on the brink of malnourished death. God bless! x.

jerseyangel Proficient

Wonderful response Soozle.

elye Community Regular

Way to go, Soooozle....  :)

Lisa Mentor

YES!  Good Job Susan, or Suzzells.  You can put it out there and hope that it's accepeted. That's all you can do.  You did good. :)

Loey Rising Star

HI Poeter ! I just re-wrote my whole introductory post. ;)

 

And, my comment is awaiting moderation.....sadly, I don't think she'll allow it.  was hoping more Celiacs would join in and also comment.  I don't know why but this article,  in connection with the dietitian who posted it (this is most likely the reason - my intense concern about her methods/beliefs as a dietitian) has got me rather riled !   Must head out now.....gorgeous day here.

 

my comment:

 

I am sorry for the loss of your father, and his struggles, this is so terribly sad and this is how Celiacs often die. What SCREAMS OUT at me in your beautifully-written article is his untreated Celiac Disease (“scarred intestines” CAN improve!)….gluten kills Celiacs. Period. Had he followed a strict, gluten-free diet from the time of diagnosis (did he? I am presuming he did not – forgive me if I am in error), his life would have changed dramatically and he would have dropped weight very easily (assuming he didn’t load up on gluten-free snacks). You are Vikings….Celiac is hugely common in Scandinavia (you can get gluten-free Big Macs there!), and it is a *genetic* auto-immune disorder which kills slowly and is truly miserable. One may have it without displaying symptoms for a long, long while….but I would bet every possession and penny I own that you have it too, beautiful one. Please don’t suffer as your father did…it is entirely avoidable. If you are interested in learning more, go to a website such as Celiac.com (check out the topics in the forum) and read up because in this country, where medicine and doctors are controlled by Big Pharma and very income-driven, Celiac is grossly and sadly misdiagnosed…my own diagnosis took decades and I verged on the brink of malnourished death. God bless! x.

 

What an eloquent post. I'm very proud of you! If the moderator doesn't post your reply then it's a very sad commentary. There was not anything you wrote that was questionable. I agree that you should change the doc's name to Beelzebub - (quite fitting under the circumstances). You go girlfriend!!!

 

I was very close with my cousin who was "morbidly obese." She got lap band surgery and it turned out her stomach was riddled with cancer and due to the surgery it wasn't found in time. She passed on within 3 months. I wasn't diagnosed with Celiac at that time but I wonder if she suffered from it.

 

Love,

Loey

dilettantesteph Collaborator

I read that story, and I couldn't see where he had celiac disease.  Anyone want to help me with that?

kareng Grand Master

I read that story, and I couldn't see where he had celiac disease.  Anyone want to help me with that?

 

 

"Eventually, doctors found he had celiac disease. A wasting disease. No one had bothered to look for such a condition in a fat man. Years of being in and out of the hospital, and no one asked why he was throwing up all his food. They joked it was probably for the best that his GI system wasn’t working well."

dilettantesteph Collaborator

"Eventually, doctors found he had celiac disease. A wasting disease. No one had bothered to look for such a condition in a fat man. Years of being in and out of the hospital, and no one asked why he was throwing up all his food. They joked it was probably for the best that his GI system wasn’t working well."

 

Thank you Kareng.  I must have a worse case of brain fog than I thought.  When I looked again I don't see how I could have missed it.

psawyer Proficient

I read that story, and I couldn't see where he had celiac disease.  Anyone want to help me with that?

Thirteenth paragraph, first sentence: "Eventually, doctors found he had celiac disease."
dilettantesteph Collaborator

Thank you too Peter.  Kareng already answered above.  Maybe I'm not the only one with brain fog... :rolleyes:

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. - thejayland10 replied to thejayland10's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      TTG IgA and IGA elevated mildy

    2. - HilaryM posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      New onset constant gas

    3. - knitty kitty replied to Bindi's topic in Super Sensitive People
      43

      Refractory or super sensitive?

    4. - lizzie42 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Gluten free and oat free bars not sugary?

    5. - knitty kitty replied to MagsM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Inflammation and Menier’s disease link?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,769
    • Most Online (within 30 mins)
      7,748

    Francie Bailey
    Newest Member
    Francie Bailey
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • thejayland10
      my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening  thank you for attaching this, could this happen randomly even after being gluten-free for so long ? my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening 
    • HilaryM
      Hi all, I’ve been following a strict gluten-free diet for 1.5 years since I was diagnosed. The last few weeks though I’ve suffered almost continual bloated stomach and flatulence. It literally is almost constant - and I was never this way before. I can’t think of any change to my diet, activity, etc. I’m dying - it’s so uncomfortable and embarrassing to feel like I have zero control over this. Any ideas? Thank you!
    • knitty kitty
      @Levi, How are you doing?  Sorry I missed your posts.   How's your thyroid?  Did your Vitamin D stabilize?  Do you have long hauler syndrome after Covid? Consider switching to Vitamin D 3, the natural form of Vitamin D.  Vitamin D 2 is the synthetic form of Vitamin D which the body can have difficulty changing to an active form.  Also, Thiamine is needed to active Vitamin D.   Hypothyroidism can be caused by Thiamine deficiency.  The thyroid is an organ that uses lots of thiamine.  sometimes thyroid deficiency can also cause hyperthyroidism, or swings between both hyper- and hypo-thyroidism. We need more Thiamine when we're sick with an infection (like Covid) or injured.  We need more Thiamine when we're physically active.  We need more Thiamine when we're emotionally stressed or worried.  Our brain uses the more Thiamine just thinking than our muscles do while running a marathon.  Thiamine is extremely important in fighting infections.  Covid patients and long haulers have found taking Thiamine has improved their survival rate and long term symptoms.   Consider taking a Thiamine supplement like Benfotiamine which has been scientifically shown to promote intestinal healing.  Damaged villi need thiamine to grow back.   Be sure to take a magnesium supplement, too.  Thiamine and magnesium make life sustaining enzymes together.  You also need magnesium to keep calcium in the bones.  The thyroid regulates calcium.  A wonky thyroid can lead to reduced bone density.   Remember the B vitamins all work together in concert so adding a B Complex to Benfotiamine and magnesium supplements and Vitamin C would be great in improving absorption of nutrients while we're dealing with celiac disease. Namaste
    • lizzie42
      I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any ideas? 
    • knitty kitty
      Oh, @MagsM, Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.   I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.   If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots.  The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.    Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).   I hope this helps give you some direction to take on your journey!
×
×
  • Create New...