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

Nutritionist Appointment


gavinsdaddy

Recommended Posts

gavinsdaddy Rookie

I have appointment with a nutritionist on wenesday.I was woundern what kind of questions I should ask. I want to try to make the most out of this appointment. Any help would be great.


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



Celiac.com Sponsor (A8-M):



aaascr Apprentice

I don't mean to be facetious but ask

how many celiac patients they see

each year and are they familiar with

this website. The person I went to

saw maybe one patient a year and

had no clue - that's not to say all

nutritionist are clueless, but the answers

will give you an idea of what they

are familiar with.

I learned most everything from research

and this website.

Good Luck!

StrongerToday Enthusiast

If you don't like the one you made an appt with, I can send you the contact information for mine. She's great, and her daughter is gluten-free so that helped a lot!

kabowman Explorer

I was very happy with the fact that my nutritionist knew about celiac disease, gave me info, talked about where the hidden gluten was etc and I had gone in for pre-diabetes appointment, not for food intolerances. Unfortunately, she didn't say anything that I had not already found out on my own, online.

BRUMI1968 Collaborator

I'm waiting a call from the nutritionist myself; but then my doctor's PA told me that she had sent someone else to see this same person, and didn't learn anything she hadn't learned on the Internet.

Thus, if my insurance ins't going to cover it, I'm going to research it out myself. My questions, though, if I do go:

1. where is hidden gluten

2. are we talking molecular levels - do I need my own toaster/cutting board/etc.

3. if I'm not one of those folks who instantly reacts to gluten, how can I be sure I'm safe

4. do I need a biopsy?

5. how do I get myself a bone density scan, and how often do they need to be checked up (though this might be more for your regular doc)

6. how can I be sure I'm getting enough fiber?

7. if I'm unable to absorb nutrients through my intestines right now, how can I get some vitamins/minerals into my system?

8. are there ways s/he knows of to help convince my family to get tested (Mom and sister)

9. what are support groups in my area

10. are there any studies that need my info right now?

11. are there any physicians s/he knows of who are experts in celiac that I might consider seeing?

i don't know...those are just some ideas. I think the hidden gluten, especially in non-food items, is important. Every time I use my shampoo and stuff I wonder what is in it, and since I don't read industrial gobbledy-goop, I can't tell myself.

Good luck.

penguin Community Regular

See, you don't need a nutritionist at $80 a pop...

1. where is hidden gluten - Modified food starch, natural & artificial flavorings, malt, MSG (ok if in US), hydrolized vegetable/plant protein, starch, there are others also. When in doubt, call the company.

2. are we talking molecular levels - do I need my own toaster/cutting board/etc. - yes

3. if I'm not one of those folks who instantly reacts to gluten, how can I be sure I'm safe - Diligence, follow up blood tests

4. do I need a biopsy? - that's for your regular dr to answer, depends on blood tests and/or how firm a diagnosis you want.

5. how do I get myself a bone density scan, and how often do they need to be checked up (though this might be more for your regular doc) - that's for the reg doc and your insurance

6. how can I be sure I'm getting enough fiber? - metamucil is gluten-free, and plenty of veggies and fruits (ie: apples with the skin on, oranges) and brown rice, etc.

7. if I'm unable to absorb nutrients through my intestines right now, how can I get some vitamins/minerals into my system? - liquid or sublingual (under the tongue) vitamins. Intravenously if the deficiency is severe

8. are there ways s/he knows of to help convince my family to get tested (Mom and sister) - research, and books like dangerous grains and Celiac Disease: a hidden epidemic. Keep on them, give them stats.

9. what are support groups in my area - google it

10. are there any studies that need my info right now? - google it

11. are there any physicians s/he knows of who are experts in celiac that I might consider seeing? - google it, ask other celiacs in your area

gavinsdaddy Rookie

Thanks for all your input.That was a big waste of time and money.


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



Celiac.com Sponsor (A8-M):



kabowman Explorer

I think some of us need to go that route when you are first starting out. You just don't know. My husband had the same opinion - we didn't learn anything but it didn't really hurt to go since insurance covered the visit. This board is more help than any doc or nutritionist I ever talked to...ever.

wolfie Enthusiast

I think I got lucky...my nutritionist is the one who suggested that I be tested for Celiac while seeing her for my eating disorder. We talked a lot about my "IBS" and food intolerances and she suggested the blood tests. Once I went gluten-free, though, she has some info, but not nearly as much as I was able to get myself with some research. When I went back for a follow-up, she said that I could teach her! LOL!

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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,339
    • Most Online (within 30 mins)
      7,748

    Teresa King
    Newest Member
    Teresa King
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.