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

Going To Nutritionist?


Googles

Recommended Posts

Googles Community Regular

I am going to a nutritionist for the first time on Tuesday (I was diagnosed about two weeks ago). From what information I got from my PCP I know I need to ask about multivitamins and Calcium and Vitamin D suplements. But this is about all my PCP knew. I know that I only know a very little amount. I was wondering if people had questions that I should ask the nutritionist when I see her. I feel like I don't know what to ask, but do know that there is a huge amount I don't know. The GI doc just gave me the diagnosis and asked it I had any questions then (over the phone), I didn't because I was too overwhelmed. The seems to be the last chance to ask questions. Help? Thanks.


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



Celiac.com Sponsor (A8-M):



Foxfire62 Newbie
I am going to a nutritionist for the first time on Tuesday (I was diagnosed about two weeks ago). From what information I got from my PCP I know I need to ask about multivitamins and Calcium and Vitamin D suplements. But this is about all my PCP knew. I know that I only know a very little amount. I was wondering if people had questions that I should ask the nutritionist when I see her. I feel like I don't know what to ask, but do know that there is a huge amount I don't know. The GI doc just gave me the diagnosis and asked it I had any questions then (over the phone), I didn't because I was too overwhelmed. The seems to be the last chance to ask questions. Help? Thanks.

If I were you, I'd find a nutritionist who knows celiac disease quite well. My first experience with a nutritionist was a laugh. She just read off of some pages and provided me some copies of things to read that I already knew about.

If you find a nutritionist who had celiac disease, you would really be in luck. I found one, and I went through some rough spots in my recovery process (still going through them), and thanks to her, I am now on a diet for people who get hypoglycemic. It appears, depending on severity of damage and your age, if you've lived with celiac disease a long time and start healing, your intestines don't really know how to work properly, and your body reacts in a way that it's not used to. Because of this, I've become hypoglycemic, so now I am following a diet that is higher in protein and allows complex carbs. This has helped me tremendously. Had I not had her a nutritionist, I would be taking Xanax all the time as the doctors thought I just had an anxiety issue. But my nutritionist, because she went through something similar, understood what I was going through and recommended a diet change. It has helped me a lot. Although I'm not fully recovered and still suffer complications, I know I can turn to her for help.

Again, if you can find one, go to a nutritionist that is either well-versed in celiac disease or has had it herself/himself.

ang1e0251 Contributor

No matter what, don't ever think this is the final time to ask questions. You can ask questions here anytime and as many times as you wish. Someone will always respond. You also should be able to ask your PCP questions, problem is he is not very well versed in celiac disease. There is a lot of information on the web and at this site. A good nutritionist could be a Godsend as the PP pointed out. I would ask about her qualificaitons with celiac disease before I schedule an appointment. Ask to interview her by phone, before you choose. That's not unreasonable.

Googles Community Regular

Hi,

My GI put through the referal to this nutritionist so I'm hopeing that she will know about celiac disease as my GI seemed to know about it. I'm moving in a month to graduate school and there I will go to the health center. I will have to find out what they know or if I am going to have to go some where else for treatment of this. Thanks.

ravenwoodglass Mentor
Hi,

My GI put through the referal to this nutritionist so I'm hopeing that she will know about celiac disease as my GI seemed to know about it. I'm moving in a month to graduate school and there I will go to the health center. I will have to find out what they know or if I am going to have to go some where else for treatment of this. Thanks.

The only treatment for celiac is the diet. Your health center should be notified of your postive diagnosis, you can have copies of your records either sent to them or you can get them from the doctor's that did the diagnosis and give them copies. There are some tests that should be done, you should have your antibodies rechecked at 6 months to a year, if they were part of the diagnosis, and it is a good idea to check your vitamin and mineral levels to make sure that you are absorbing your nutrients after you have healed. It is also reccommended that you have an evaluation and testing for osteoporosis or osteopenia as these are often found in even very young celiacs.

Googles Community Regular
The only treatment for celiac is the diet. Your health center should be notified of your postive diagnosis, you can have copies of your records either sent to them or you can get them from the doctor's that did the diagnosis and give them copies. There are some tests that should be done, you should have your antibodies rechecked at 6 months to a year, if they were part of the diagnosis, and it is a good idea to check your vitamin and mineral levels to make sure that you are absorbing your nutrients after you have healed. It is also reccommended that you have an evaluation and testing for osteoporosis or osteopenia as these are often found in even very young celiacs.

I was using the word "treatment" in its most broad sense in any time I need to visit the doctor for medical tests to check vitamins and blood levels, especially when I would otherwise not need to.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,571
    • Most Online (within 30 mins)
      7,748

    Ygomez
    Newest Member
    Ygomez
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • 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.