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

Should I Fight For A Nutritionist At This Point?


bakergirl90

Recommended Posts

bakergirl90 Apprentice

I was diagnosed with Celiac in July. I got a referall from my GI doctor back in February for a nutritionist/dietician because I was still having problems and of course it was denied because apparently people with Celiac disease are just supposed to figure it out on their own. 

 

I was planning on fighting it, but have been feeling better now, and learning more about what I should and shouldn't eat. I never got around to writing back to the denial because I have been so busy with my at home business. I don't know if I should try and fight it still or just move on, because I feel like by the time I even get to see one, I will have already figured it out more and be feeling even better, it will be pointless right?

 

I just feel like it shouldn't have been denied in the first place!! 

Also it looks like based off of other people's experiences, that even if you get a nutritionist/dietician they most of the time do not even know how to help someone with Celiac! I feel like I will probably know more about it than they do. 

Am I ignorant to be thinking this way? Or should I try and fight for something I may not even need anymore. If only I could have just gotten the help when I NEEDED it!! 
 

So frustrated.

 

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I would stop fretting over it.

Your best bet is to keep on top of celiac disease research, use this forum for questions and support, maybe find a local support group, and get on with your life.

Insurance is going to deny you for many things over the course of your life. Some things are worth fighting for, but this issue is not. Most registered dieticians are not experts in avoiding gluten. You can see that from what other forum members have posted.

Even if you had gone, chances are you still would have made plenty of mistakes. Who can think clearly when you are first diagnosed? You are sick! Going gluten free has a very steep learning curve. You have come this far, you probably have got it down. If you need help, just ask! We are here for you!

Hope your business is going well!

StClair Apprentice

I was referred to a nutritionist and did not receive any information I did not already know. I kept the appointment because I hoped that I would get some help working an acid reflux and a non-gluten diet together without continuing to lose weight, but no help. Online research has been my chief source of info. Forums like this are great. Good luck!

notme Experienced

nah.  pick your battles.  chances are, you would have had to wait on an appointment, anyway.  mine was two weeks after my dx (congratulations, you have celiac, eat gluten free, have a nice day)  - i was, like:  what am i supposed to eat in the mean time????  so, i did a ton of research and asked around here.  by the time my appointment came around, i cancelled it.  in hindsight, i probably already knew more than they could have taught me (and, i have heard some of them have no clue at all)  save your time and trouble.  really and truly, the only time i suppose you would need a dietitian/nutritionist would be in the first few days.  like:  congratulations, you have celiac, eat gluten free, GO SEE THE DIETITIAN (in an hour, go eat your last gluten meal, lolz) if you could see them in an immediate time frame, say, the same day or the next day, that would be helpful maybe.  THEN, have a nice day.  and you might :)  because you would know what to eat :)

 

when you get dx'd with type 1 diabetes, they don't leave you flailing around for 2 weeks, though, <_<  so i see your point....   -_-

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. - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    3. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748

    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.