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

Went To See A Dietitian


DonaldandAlanda Evans

Recommended Posts

DonaldandAlanda Evans Apprentice

I can't believe how pointless that was! She told me I could eat rice krispies and I didn't need to worry about cross contamination from the toaster. She then went on to explain what gluten was and what contained gluten......as if reading directly from Wikipedia..........I'm sure some of you have had great experiences with dietitians, but I can't say that I did.


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

I feel lucky that my insurance picked up the tab for the dietitian. That said, by the time I went to see her I felt I was already armed with more information than what she gave me. I even found a mistake on her pamplets. On the pamplets it said that you could not eat buckwheat, and we all know it is just has a misfortunate name. The dietitian did not even touch on cross contamination either. I did not gain anymore insite by going either. Lately at work people have been coming to me asking what the ins and outs of the diet are since I've been at it for a year or so now. (There have been some relatives to people I work with being diagnosed). I kinda feel flattered. One person told the dietitian that they already talked to me and already had some of the basic information. I also gave her one of my books to read.

mamaw Community Regular

I'm with Roda. Sorry about the dietician. I've found that if a person isn't living with celiac they are not the most informative people to help navigate the gluten-free lifestyle. Same thing happened to me Roda..... Now I have doctors , hospital dieticians refer patients to me for help. I offer my services but they make the bucks...

Sometimes if one can find a support group that is the best option. Of course one needs to hook onto an old time celiac who stays up with current info & gluten-free foods...

There is a wealth of info on this site&some of the most knowlegable celiac people. We celiac folks don't all fit in the same box--- we all heal at different levels, times & with or without eating certain gluten-free foods. We are a unique group.....

If we can be of help please just ask....questions is how we all learn...

blessings

mamaw

Coleslawcat Contributor

I agree about them being worthless. I learned more in an hour on the internet than I did from my meeting with a dietician. It was a total waste of time.

Bobbijo6681 Apprentice

I also had NO luck with the dietician. I was hoping to have somemore clarity and understanding after wasting my money, but really didn't have any better direction at all. Everything I know about this disease I have learned by reading here. The one thing she did get me was the phone number for a local bakery that is strictly gluten free. The woman that opened the bakery did so because her daughter has Celiac and she had a hard time finding things in our area for her to eat. She does cakes, cookies, bread...etc. I was very excited about this, but haven't called her just yet. I want to finish healing before I add in that kind of stuff, but it is good to know that I can have a bday cake and when I am ready to get married I can have a Wedding Cake that I can eat!!

newgfcali Rookie

I was toying with the idea of finding a nutritionist or dietitian, but found a great source on the internet for nutritional info. It's a chiropractor's website in Clearwater, Florida, and she's got a ton of info about vitamins, minerals, nutritional needs, and what foods give you which vitamins/minerals. Here's a link to the vitamin page:

Open Original Shared Link

At the top are links to the minerals and various food groups.

Who needs a dietitian? We know where gluten is hiding and which foods to avoid, so it's more a matter of choosing the right foods and supplements to keep your vitamins & minerals up. Armed with these charts, I feel like I've got the information I need now to stay healthy. For instance, I know I'm low in B12, and looking at the list of foods that contain it, I'm going to have to supplement my diet because I don't eat most of them!

mamaw Community Regular

newgfcali

Kudos to you... Thanks for the florida site I've bookmarked it! happy healing

blessings

mamaw


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



Celiac.com Sponsor (A8-M):



Peace41 Rookie

Hello All,

Wow, its good that there is many knowledgeable people here, I feel very blessed that I am a member in this forum right now. Because I need access to information quickly. I am sorry about ur experience with a dietician. I went to one ages ago, actually the charity that was helping my son and I, they are a health outreach for people that live in rural areas to access specialists from different areas, they made us go, because they thought we were doing the wrong thing and they wanted to be able to say to me, ur wrong because they wanted us to do, what they wanted us to do, whether it was good for us or not. That dietician confirmed for me and them that our diet was 97% almost perfect for us. So she told us what to add in and why, so we did. And they became quiet, along with others there at the time, that gave us a hard time of what we were eating, because it was made known that we were up on our diet and health matters, we became very knowledgeable. Even my son at seven became very knowledgeable about diet and health and what he could do and couldn't, could have and couldn't have. When he got fibro he learnt how to cook and about using herbs because he couldn't run around like before and play. And he loved to cook and got a thing for fresh herbs and he still has a thing for cooking and herbs at 18.

But we are about to go to a dietician, but this is not just a dietician we are seeing, we are seeing a Chiropracter that tests for allergies, does dietry programs etc...catered to suit us, and also can do treatment for allergies. Its the everything else along with gluten intolerance that we need to know exactly what we can have and can't have and to know that quickly and how we can do what is needed without all our other disability needs not being knocked out. And I need to know what medications we can have and herbal supplements, since the adverse reactions I went through that triggered all of this was terrible. If we are not happy with them, we are also seeing another Chiro that can test for allergies, along with doing laser therapy for allergies etc....or an immunologist etc...and for me I don't have to pay for this, because I am a veteran. But I have to see if my son can be covered through our health system, otherwise we have to pay for him, which I would do, now that we have another possibilty for him to obtain some pain relief, he has fibromyalgia and has been doing pain mangagement, but if we can get a treatment plan for him that works, then it will be worth it. And if we have a diet that works for us, then that will be great we can then come into healing and recovery and just do.

Peace 4 1

momwith?s Newbie

I am new to all this - my 16 yo daughter was just diagnosed on Friday. I was hoping that an appointment with a dietitian was going to be really helpful, but now I'm not so sure. To be honest, I'm feeling overwhelmed by too much information. Can someone suggest a good place to start - it would take me days to work through all the info on just this website alone. In my ignorance, I bought rice krispies for her breakfast thinking they were okay. How can you tell - the ingredients did not list wheat, rye, barley, or oats. Thank you!

Ahorsesoul Enthusiast

I am new to all this - my 16 yo daughter was just diagnosed on Friday. I was hoping that an appointment with a dietitian was going to be really helpful, but now I'm not so sure. To be honest, I'm feeling overwhelmed by too much information. Can someone suggest a good place to start - it would take me days to work through all the info on just this website alone. In my ignorance, I bought rice krispies for her breakfast thinking they were okay. How can you tell - the ingredients did not list wheat, rye, barley, or oats. Thank you!

When getting the appointment with the dietitian make you sure say you want one who is a specialist in Celiac Disease. Will make all the difference in the world. Does not matter if it's not close to you, it's worth the drive. I drive two hours to Mayo Clinic. First dietitian was a cardiac dietitian. I thought I'd just ask her about the gluten free issues. She told me flat out she really didn't know. Loved her for saying that!!! My dd was just tested for celiac at Mayo this month. Dr Murray suggested we see a celiac dietitian. Excellent person. Knew all the ins and outs of celiac issues. She also suggested we get the book "Gluten-Free Shopping Guide 2009/2010". Their website provides update for the book too. It will help you and your dd a lot.

Rice Krispies contain malted barley which has gluten. Chex has cereal that says gluten free right on the label. You will learn to read labels very well. Are you being tested to see if you should be gluten free?

Jestgar Rising Star

I am new to all this - my 16 yo daughter was just diagnosed on Friday. I was hoping that an appointment with a dietitian was going to be really helpful, but now I'm not so sure. To be honest, I'm feeling overwhelmed by too much information. Can someone suggest a good place to start - it would take me days to work through all the info on just this website alone. In my ignorance, I bought rice krispies for her breakfast thinking they were okay. How can you tell - the ingredients did not list wheat, rye, barley, or oats. Thank you!

Ask ask ask. It is overwhelming at first, but really, it does get easier.

luvs2eat Collaborator

When I was diagnosed my doc told me to talk to the hospital dietician, but by the time she got back to me and we talked, she told me I already knew way more than she did. IF you can find one who specializes in celiac disease, it might be worth it, but the peeps HERE know SOOOO much and have been the most helpful information site for me!

I also took a class offered by the hospital. The senseless woman handed out a foods list anyone could get on the internet, served us some crappy gluten-free-mix brownies (I can make WAY better ones, and spent most of the time talking about her fung shue business and how we could improve our health by repositioning our furniture!!!

I sent the hospital a letter telling them how awful the program was and they refunded my money!

Ahorsesoul Enthusiast

I also took a class offered by the hospital. The senseless woman handed out a foods list anyone could get on the internet, served us some crappy gluten-free-mix brownies (I can make WAY better ones, and spent most of the time talking about her fung shue business and how we could improve our health by repositioning our furniture!!!

I sent the hospital a letter telling them how awful the program was and they refunded my money!

I am so glad you sent that letter!

momwith?s Newbie

Just wanted to say thanks to all who replied. I actually typed a response yesterday but not sure where it went - probably hit the wrong button. Anyway, I'm taking a deep breath and diving in. I'm sure I'll make plenty of mistakes along the way, but it can't be as bad as doing nothing. Thanks to a great pediatrician, we got a diagnosis pretty quickly so in that way we are ahead of the game. I'm sure I'll be back with lots more questions - it's good to have such a valuable resource!

JBaby Enthusiast

My experience is after i was diagnosed, I called 5 dieticians. Didnt work with one of them. Started my search again 7 months later and found a competent nutritionist who has celiac also. It s a blessing. My entire being has changed, feel great, better than when i was going Gluten-Free on my own. Mistake. I think the key is to fins a NUTRITIONIST rather than a dietician. There is a difference.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748

    tdouglas2901
    Newest Member
    tdouglas2901
    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

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.