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

Anyone Seen A Registered Dietician?


GlutenFreeAl

Recommended Posts

GlutenFreeAl Contributor

I'm thinking it might be a good idea - I've very paranoid about all of the vitamins and minerals that are probably absent from my diet. I've definitely seen a negative effect not only on my weight, but also in my hair and eyesight!

Anyone have any luck with a dietician? Any advice for finding a good one?

Thanks,

Al


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



Celiac.com Sponsor (A8-M):



teebs in WV Apprentice

Al,

The GI that did my biopsy recommended that I have my GP refer me to a dietition. He said that although there is alot of great info on the internet, it would be best to seek the advice of a professional (face to face). I asked my GP about it and he said that he would make arrangements to refer me to a dietition. Well......the dietition that my doctor's office contacted didn't see the need to meet with me. She said that she would send me some information in the mail and that if I had any questions after reviewing them, I could give her a call. The info that I received from the dietition was really old - dates on some of it were from the early 90s.

Sorry for the ramble and to answer your question - no, I haven't "seen" a registered dietition.

I would also love to hear from others who have - is it worth it, and should I be more insistent on this?

Merika Contributor

Most of what I've heard is that dieticians know little about celiac and are more prone to give wrong and harmful information than good and helpful info. I know it's a little depressing. There are some blood tests for minerals/vitamins that a doc can run if you're interested. I don't know too much about them.

I think the best thing you can do is eat a healthy diet that does not include gluten. I know that sounds duh, but really it's all you can do. If you like vitamins, then add a quality gluten-free multivitamin. If you are particularly deficient in something like iron (anemia) you can take special stuff for that. The deficiencies vary by person, so a dietician couldn't really give you general stuff.

Merika

IronedOut Apprentice

I saw a dietician. She didn't give wrong information. She gave such limited and limiting information that if I hadn't already found this board, I might have considered sticking with gluten.

Save your money for some good gluten-free food.

Guest nini

I saw a dietician and it was obvious that I knew more about the gluten free diet than she did, all she could offer me was an outdated handout that said that buckwheat was part of the wheat family and to avoid it (buckwheat IS gluten free... ) She was really useless. I asked her how many people with Celiac she counseled and she said that I was the first. Well great! I left there very frustrated to say the least.

StrongerToday Enthusiast

I lucked out - my mom's best friend and neighbor is a registered dietician who's daughter has Celiac. She was very helpful in the beginning, recommending books and products. We've never talked about minerals and vitamins, other than her recommending that I take a multi-vitamin (which I had been doing).

Al, I'm not sure where you live - but I would recommend trying to contact a good hospital near you and seeing if they have a referral program. Just plan to spend an hour or two making phone calls, trying to find someone with a Celiac background.

happygirl Collaborator

I had a similar experience with a dietician (i.e., lack of knowledge about Celiac) shortly after I was diagnosed.

However, I think that if you are going to a dietician/nutrionist armed with YOUR gluten knowledge, as well as 'menus' of what you eat on normal days, then maybe they can provide you with information in terms of what you need to supplement, etc. I think that they could be helpful in that sense! Now that you mention it, that seems like a good idea now that I have a handle on the "gluten free lifestyle"

Good Luck!


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



Celiac.com Sponsor (A8-M):



elonwy Enthusiast

The dietician I saw printed a bunch of stuff off the internetwhile I sat and watched, and then read it to me. She wanted to be helpful, but just had no idea. The best thing she did was point me here.

No mention of vitamins. I take a multi though.

Elonwy

Guest SusieQ
I'm thinking it might be a good idea - I've very paranoid about all of the vitamins and minerals that are probably absent from my diet. I've definitely seen a negative effect not only on my weight, but also in my hair and eyesight!

Anyone have any luck with a dietician? Any advice for finding a good one?

Thanks,

Al

Guest SusieQ

You can contact the American Dietetic Association and ask for a referral to someone with a background in counseling patients with Celiac Disease/Gluten Intolerance. Hopefully, they will have someone in your area. Another possibility is to contact your local hospitals and ask if they have anyone knowledgeable in these areas.

There is a group of dietitans with the American Dietetic Associaiton that belong to a Medical Nutrition Practice group. some of them belong to a sub-specialty called, Dietitians in Gluten Intolerance Diseases. These dietitians are trying to promote awareness, education and standards of practice.

The problem is that doctors don't refer very many of these patients to dietitians. It is a little hard to become experienced in a field and build up education materials if you never see patients dx. with these problems. The dietitians in the sub-specialty Gluten Intolerance group are trying to change this.

Personally, I think I've had all of two patients referred to me in about 30 years.

I hope this helps.

Susie

Rachel--24 Collaborator

My doctor sent me to the dietician and when I showed up she was scrambling for info. She was apologizing for not being prepared and admitted she usually deals with diabetics. She had a couple books on Celiac and was printing info off the CSA website while she talked to me. She was nice but didn't help me one bit. I had already aquired way more knowledge about the diet and I think she knew this and was embarassed.

pattic Rookie

I originally went to a nutritionist for another problem in 1997. She's actually the one who told me (based on my symptoms) to avoid wheat. She was very helpful actually and put me on the right track at least.. I then realized that it was gluten I needed to stay away from, not just wheat. She also wasn't a 'dietician', but rather more of an alternative meds nutritionist.

It does appear that people with celiac disease, who like to research, and enjoy eating/cooking, are the best people to talk to.

  • 2 weeks later...
Kathy P Newbie

"ditto" to what everyone else said. I have been to a registered dietitian. She was moderately helpful. But we discovered later that some of her information was wrong or misinformed. I paid a LOT of money. My insurance did not cover any of it, eventhough it was prescribed by my doctor. I have learned more by talking with others and this web site.

sorry, but good luck

tiredofdoctors Enthusiast

My neurologist has a registered dietician in his office, but I'm too scared to make an appointment now -- what you guys have experienced is TERRIBLE. . . . Lynne

StrongerToday Enthusiast

My experience was very good - she was a real blessing. IMO you just need to research ahead of time - ask questions about her background, if she has experience with Gluten Free and if not maybe there's someone she could recommend. We're so used to reading labels - read her label :D before you go in.

tiredofdoctors Enthusiast

Smart idea --read her label :P Makes sense to me!

2tired Apprentice
My neurologist has a registered dietician in his office, but I'm too scared to make an appointment now -- what you guys have experienced is TERRIBLE. . . . Lynne

The dietician that I talked with was really helpful. She had list of foods that were allowed and not allowed. I do not cook so she dicussed options with me as to how to do foods in the mocrowave. She also looked up certain foods that I was wondering about to see if they were safe foods. She has also monitered my weight since I have been anorexic in the past. I have the direct number to her office and can call her any time that I have a question or just need to talk. She has really been helpful to me.

tiredofdoctors Enthusiast

I found a RD in my city who knows about celiac!!!!! I told her that I have gluten intolerance (Ataxia vs. celiac), but still needed to be gluten-free for life. Told her, too that I want to lose weight, and it's just not happening. She said that she is very familiar with gluten-free diets -- wants me to bring the books I have, and she said that she has a wealth of information which she will be glad to copy for me. She actually took a course offered by Shelley Case, the author of Gluten Free Diet: A comprehensive resource guide.

She said that we're going to sit down and develop a game plan for me, with an outline of what I need to do and not to do in order to stay in my gluten-free lifestyle and still lose weight. I am EXCITED!

Unbelievably, I found her in our yellow pages. I looked under dieticians -- a lot of them advertised that they specialized in "institutional nutrition" -- mostly nursing homes, so I figured they wouldn't be a good fit -- they're used to adding or subtracting caloric content for patients. She was just listed independently, and I called and voila! And, to boot, she only charges $75.00 -- I can take it off my FSA. My husband and I are unbelievably excited. . . . Lynne

StrongerToday Enthusiast

YaHooo... great news!

tiredofdoctors Enthusiast

Amazing, Huh????? I'm so cynical, though, I keep thinking . . . "there's got to be a catch -- there has to be something that's going to go wrong . . . " :( Just need to stay positive -- it's going to be a GOOD visit! . . . Lynne

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. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    2. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    3. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    4. - pdm1981 replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    5. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,850
    • Most Online (within 30 mins)
      7,748

    Roselle
    Newest Member
    Roselle
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dawn Meyers
      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
    • Dawn Meyers
      Mayo is great and yes I had the same experience.  They take you seriously and they check everything.  I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.  
    • pdm1981
      When I went to the Mayo Clinic back in 21' it was pretty amazing. The doctor sat and went over everything with me for a couple hours. I finally had to ask him if he had other patient to see. He said that not until he was done with me. I went back to my hotel room that day after some blood work and then got an itinerary of tests to be done over the next 5 days. It was unbelievable. I had what would've been 4 years of testing back home done in 5 days. I went home at the end of 5 days and got my results a week later on a zoom call. EPI and rapid gastric emptying syndrome. I do have celiac disease but that wasn't the cause of my continued symptoms. Those people up there are great. Wouldn't that be amazing if all medical care was like that?  That's weird that the antibodies are that high. Hopefully it's not refractory celiac disease. Good luck.
    • Dawn Meyers
      Antibodies my number is in 500's. COVID hit and I was  layed off from my job so no insurance (was in Arizona) so couldn't complete all the other testing they wanted to do. Back home and contacted Minnesota Mayo and they take my new insurance so considering going back in spring. 
×
×
  • Create New...