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

A Thank You To Dieticians


mushroom

Recommended Posts

mushroom Proficient

Many of us on the forum have in the past, myself included, been somewhat scathing about the help rendered to celiacs by dieticians, and their lack of knowledge of the celiac diet in general.

Now, while I know there are many out there who are pretty useless, I wanted to single out for praise a couple of hospital dieticians who who were able to cater to my needs (with my husband's help) when I was not able to do so myself (being intubated and in an induced coma.) With my multiple food intolerances I had to be one of the toughest challenges they had faced. They managed to come up with a tube feeding formula (from reading the labels) that did not make me sick, and then when I was finally able to resume eating orally, the dietician worked out meal plans for every meal with me for every day I was in the hospital (all 21 of them) from what was on offer in the kitchen that day -- with a few additions and substitutions tossed in here and there, and she worked with the kitchen staff to make sure they understood how to prepare my food.

I later made a special trip back to the hospital to thank her, and she had a student trainee with her so I am sure that that young lady also got special training in gluten free (and other free).

This was in a hospital that has special diets for practically every condition you can imagine, EXCEPT gluten free. :blink:


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

waaaait coma what when where :blink:

I hope you are doing better :)

At any rate, it can be a pain. I haven't had to stay in a hospital since i was a toddler (had flu really really bad).

I'm glad to see this :)

Celiac Mindwarp Community Regular

Wow, that's amazing, so glad they were there for you at the right time.

I agree we need to mention good healthcare as well as bad.

Extra glad they managed to sort you out. This disease is unbelievable.

GF Lover Rising Star

Wow Mushroom, I hope you have recovered well. I agree with the kudos. Some are caring and knowledgeable. Just this last Wednesday, I was in the Hospital, the gal was bringing the tray cart in the room, another gal came right behind her her saying wait, wait. she grabbed the cart and apologized saying it wasn't double checked and was not gluten free. I had a new tray in 15 minutes from her personally. I was so impressed, I wanted to cry. She obviously took her job seriously and cared enough to run after my tray.

There are "Celiac heroes" as I call them and always thank them profusely. I'm so glad you went back to thank her. I'm sure you made her feel very good and feeling good is the goal.

Thank you for sharing that with us.

Colleen

GFinDC Veteran

Thanks for the positive story Shroomie! It's neat when people can make things work out for us. I hope you are recovering well.

simon-n Newbie

Nice story! Hope you'll feel better soon!

My girlfriend is dietician and believe me, they focus on celiac disease, and other food intolerances, more than ever before. It will only get better :)

Nice you went to her again just to say thanks :) They love it and it makes them work even harder :D

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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,352
    • Most Online (within 30 mins)
      7,748

    Teagan
    Newest Member
    Teagan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • 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.