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
mushroom
Posted

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
shadowicewolf
Posted

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
Celiac Mindwarp
Posted

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
GF Lover
Posted

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
GFinDC
Posted

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
simon-n
Posted

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.

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. Florence Lillian
      - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    2. trents
      - trents replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

      @HectorConvector, Please try adding Niacin to your supplements. Low Niacin has a connection with suicidal ideation. Been here, done that. Niacin made me feel better mentally and physically. Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together. I know this works...
    4. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojda...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s help...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,624
    • Most Online (within 30 mins)
      7,748
    Keylargo
    Newest Member
    Keylargo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Florence Lillian
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Florence Lillian · Posted

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    • trents
      Terrible Neurological Symptoms

      By trents · Posted

      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Please try adding Niacin to your supplements.  Low Niacin has a connection with suicidal ideation.  Been here, done that.  Niacin made me feel better mentally and physically.  Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together.  I know this works because I've cracked some vertebrae and this combination relieves the pain.  I was prescribed opioids, but couldn't function or poop, so... I can highly recommend these vitamins for pain relief.   I adopted a paleo diet, the Autoimmune Protocol Diet which has been shown to improve intestinal health.  Improving intestinal health improves mental health because of the gut brain-axis.  Important neurotransmitter Serotonin is made in the digestive system.   Please Read... Association between dietary niacin intake and suicidal ideation: mediating role of C-reactive protein https://pubmed.ncbi.nlm.nih.gov/40859220/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.
×
×
  • 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.