Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Nutritionalists
0

11 posts in this topic

I see my nutritionalist tomorrow. I'm trying to remain positive, but my mother heard about some displeasing experiences other patients had. Someone said that the nutritionalist just looked up the definition of celiac disease on the internet and simply started with the "little hairs that push the food down" etc, etc discussion.

Please--let me know if this type of specialist, or whatever category in which they fall, is trustworthy and helpful.

Thank you!!!!

0

Share this post


Link to post
Share on other sites


Ads by Google:

If you are seeing a good nutritionalist who knows a lot about celiac disease then they can be a major help, but if they are clueless and know nothign about it then maybe try to look for someone better

0

Share this post


Link to post
Share on other sites

The nutritionist we saw knew about as much as I did. I got my info from library and CSA. I went there expecting superior knowledge and all we got were the same things I ran into during my research. Unless the celiac disease patient is utterly clueless, the nutritionist is a waste of money. I feel the nutritionist should have Betty Hagman's books in their office to show you and the CSA product guide to show you (not to give to the patient, but to show that it exists).

0

Share this post


Link to post
Share on other sites

I have seen two nutritionists. The first one was when I was in the hospital. She knew alot because her husband has celiac disease, so she was able to give me alot of info. The second one, was a waste of money and time. I had already done alot of research and gave her information, instead of her giving me info. In my opinion, joining this forum and chatting with others, is where I found most of my useful information as well as the strength to get through it.

Good luck! I hope you have a better experience!

Take Care!

0

Share this post


Link to post
Share on other sites

Hi again :-),

I understand where you're coming from regarding the nutritionist...the first dietician I saw was affiliated with my GI doctor and just printed a few sheets of paper from the Internet...as if I couldn't have done that myself and saved a heck of a lot of money <_< !

However, through the support group in my area I met a dietician who has Celiac disease himself. As I said in my response to your support group post, I'm not sure where Greenville, PA is or how close it is to Pittsburgh. If you can make it into Pittsburgh, though, I would really recommend making an appointment with him if the nutritionist you see isn't helpful. He spent 2 hours going over the gluten-free diet with me and then gave me a huge packet of information listing meal/snack ideas and providing the names of mainstream products that are gluten-free. Since he is both a dietician and a Celiac, I personally place full trust in the accuracy of the information he provides. If you're interested, just e-mail me and I'll give you his name and contact info. In any case, good luck in your quest to learn more about the gluten-free diet!

0

Share this post


Link to post
Share on other sites




Thanks all!

I met with the nutritionist this am--she knew how to calculate my calorie intake based on my weight, height, and age. She also knew the basic Gluten-Free no brainer foods (rice, corn, etc.). Although she didn't know a great deal about the special gluten-free products everyone has shared with me online, or the special goodies I buy at the store, she rewarded my knowledge by reducing the bill (she treated it as a fifteen minute follow up consulation--so instead of costing $52.50, it was $28).

She gave me a massive packet with a lot of good gluten-free recipes, which is helpful. My only concern was that many of those recipes contain wheat starch--but then I heard that if I didn't feel the need, I could replace it with my all-purpose gluten-free flower.

Yay!

She exceeded my expectations, and thank God she didn't go into the "little hairs on your intestines" bit.

She was satisfied with my food choices, too.

0

Share this post


Link to post
Share on other sites

With my nutritionist, I was already 2 months in or something, so I knew what I could and couldn't eat. Therefore, a lot of the basic stuff wasn't helpful. She did, however, recommend some products that were gluten-free.....unfortunately, many contain significant amounts of dairy. So, it wasn't as helpful as it could've been, but then again, I was already too far into the diet for it to be amazingly useful. I know you've already gone, Jill, but I just wanted to post my experience, anyway... :D

Glad you were satisfied and got helpful tips/recipes/suggestions. :)

-celiac3270

0

Share this post


Link to post
Share on other sites

I wouldn't see any nutritionist who wasn't an active member of a celiac support group. I would ask if s/he goes to meetings, meets with celiac patients regularly, etc.

0

Share this post


Link to post
Share on other sites
I wouldn't see any nutritionist who wasn't an active member of a celiac support group. I would ask if s/he goes to meetings, meets with celiac patients regularly, etc.

Makes sense....I went to Anne Lee (a nutritionist who works with Dr. Green; one of the most famous celiac doctors in the US). I don't know if she goes to support groups, but she tries out her gluten-free stuff on family (who aren't celiacs, but still used as guinea pigs :lol: ). I trusted her, especially since she works for a really famous celiac dr..........

-celiac3270

0

Share this post


Link to post
Share on other sites

I see...she didn't really answer any medical questions, so I don't know if she's in touch with very many top celiac disease doctors.

celiac3270, thank you very much for your feedback! I appreciate hearing everyone's stories, no matter how far along I am :)

Thanks again!!!!

0

Share this post


Link to post
Share on other sites

The nutritionist I was sent to after my initial DX was also not very helpful. For example, she told me that malt flavoring was bad and then later told me I could have Rice Krispies (they contain the malt). When I asked her about this, she couldn't give me an answer.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,362
    • Total Posts
      917,500
  • Topics

  • Posts

    • celiac disease is psychosomatic
      If a food product contains wheat, it must be labeled by law. I have been gluten-free for 11 years and have found that this whole concept of hidden gluten (aside from cc) is really not quite true.  You have to learn how to read labels correctly to identify what is in the food you are eating.  If in any doubt, do not eat the product until further inquiry is made. Rashes happen for many different reasons but they do seem to occur more frequently in those with autoimmune or allergy problems.  Those would probably be the 2 main causes of them. It can be incredibly hard to figure out and doctors are not much better at helping.  This is why my 89 year old MIL is trying a gluten-free diet because she is having rash and itching problems that are driving her crazy. No help whatsoever from doctor-land.  They just keep feeding her prednisone and that is not a good choice for anyone, never mind an 89 year old.  It's a wonder any of us get the help we need!
    • Eating food cooked on a grill (eg, quesadillas, fish)
      I ordered mahi mahi and baked sweet potato fries off the special gluten free menu last night and had a head ache all day.  They said they cleaned before making my food but I assume it is difficult in a restaurant kitchen.
    • celiac disease is psychosomatic
      Hives can be caused by so many things but primarily, it's either allergy related or autoimmune related.  You can have autoimmune hives which can result from having one or more AI diseases.  I get hives but mine pop when it gets warm and wet......I am severely allergic to molds. They just about appear and disappear quickly, if the weather goes from wet to dry. I use Benadryl to keep them from getting too bad, when needed. I also use children's Benadryl because it works just as well as the adult formula but makes me less drowsy. You can be more susceptible to environmental allergies when you have Celiac.  Is this a problem for you and your sister? 
    • Gluten withdrawals/legs welling/bloating
      Welcome to then forum, Mona! No swelling for me but I can encourage you to read our Newbie 101 section under "Coping".  Learning how to be gluten free takes time.  Withdrawal affects some of us, but not all.  Remember this is an autoimmune disorder that is triggered by gluten (unlike MS or lupus where the trigger is unknown).  But when triggered the autoimmune response (aka "flare up") can last for days, weeks or months.  So, please give yourself time.  Try to rest and put up your feet after work.  Hopefully, others here will have good tips for your specific complaint -- swelling. Read through the forum.  Ask questions.  We are here to help.  Like you, my GI just gave me a list of gluten-free restaurants.  Really!   Take care!  You will get better!  
    • Eating food cooked on a grill (eg, quesadillas, fish)
      If you have Celiac, you would want a clean grill or piece of foil.  Pieces of flour tortilla will stick to the grill and then transfer onto your corn tortilla.  Same with grilled sandwiches.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,510
    • Most Online
      1,763

    Newest Member
    SAJAFA
    Joined