Dieticians, Nutritionists..

[Jnkmnky]

Do the dieticians and nutritionists acutally help anyone deal with the new diagnosis of C.D.? How many have gone to them after being dx and felt they learned how to deal with the gluten free diet in a meaningful way? I ask because I've seen a few posts were newly dxd people are "going to the nutritionist in a week" or something like that. I know for myself, I got NOTHING from the nutritionist. Just a bill.

[Canadian Karen]

Seeing the nutritionist was a total waste of my time. (didn't waste any money since with the Canadian medical system, don't have to pay for it...) She knew nothing about celiac disease and all she did was pull out a pamphlet out of her binder, handed it over to me and said, "Here, this should help you......" Gee, thanks!!! By the time I went to see her, I knew more than she did by researching the internet (and here, bless this place!!!!)

I have yet to hear of anyone who was actually helped by them........

Karen

[Aprildncr]

I went to a nutritionist right after I was diagnosed. She was a little helpful because her son has a wheat allergy so she brought up points like having my own jar of peanut butter that we would not even have thought of. My parents found all that information helpful. But she did talk a lot about her son's wheat allergy and did not seem to realize that I have more than a wheat allergy. As I was leaving she said so watch out for wheat and I guess a lot of other stuff too. I'm now realizing that there is a lot of other stuff she really didnt talk about. I think it was a good idea to go to the nutritionist once but some people I know go on a regular basis and that to me would do no good and be a compete waste of time and money.

[drewsant]

I went to one, about a week after the Dr told me to try the gluten-free diet, because I was so confused about what to look for in foods, like modified food starch, and malt extract, etc. She was helpful in that way, she could help me decipher the labels. She didn't really know a whole lot about it. She actually found this website, and told me to go here for info. I had already found it, but I had found so many sites that I was confused as to which ones I should trust, so she steered me in the right direction there. She also gave me some ideas as far as where to look to find gluten-free food, such as corn tortillas at a mexican food market, because they hand-make them, and don't use any flour, like some manufacturers do on the conveyor belts. She also suggested I try a new grocery store that had opened up recently with a big health food section in it. I found TONS of gluten-free food there--clearly marked! That was probably the best info she gave me. Other than that, I knew just as much or more about the actual diet. She did suggest multivitamins, and after I had my blood tests done, the Dr found I was low on Folic Acid, so he put me on prenatal vitamins, instead.

[lbsteenwyk]

I guess I'll weigh in here with some comments, since I am a registered dietitian (RD). I've been a little reluctant to admit that here, b/c I see negative comments about RD's frequently. First, I absolutely agree that there is a large void in knowlege about celiac disease and the gluten-free diet among dietitians. I was guilty myself, until I started researching this area intensely because of my child's diagnosis. I work with four other RDs and I know much more about the gluten-free diet than any of them. Of course the gluten-free counseling always goes to me anyway, since I am now considered the expert.

If you are looking for an RD, I would be sure to see someone who has expertise in this area. Some dietitians are members of Dietetic Practice Groups. There is a sub-specialty of the Medical Nutrition Practice Group called Dietitians in Gluten Intolerance Disease. The American Dietetic Association has a referral service for locating RDs.

Open Original Shared Link

You can type in your zip code and search for RDs by specialty. You can select both Digestive Disorders and Gastrointestinal Diseases/Disorders to find someone who will be most likely to have specialized knowlege in celiac disease. Most of the RDs who participate in this referral service are in private practice, so you may find that they will take extra time to find resources for you, etc than if you just make an appointment with the local hospital dietitian. Most hospital RDs tend to be generalists, unless they work for very large teaching hospitals where they may work in one specialty area.

I am thinking about offering to do a workshop next year at my state Dietetic Association's Annual Meeting on counseling patients with Celiac Disease. I think there is a huge need for dietitians to help newly diagnosed persons with more of the practical aspects of dealing with the gluten free diet. What information do you think would be most helpful to receive from an RD? Here is what I usually talk to clients about:

What is celiac disease/Autoimmune DO/Importance of lifelong gluten-free diet

Allowed vs not allowed grains

Hidden Sources of gluten/ingredients that may contain gluten

Label reading/ Companies that clearly label gluten/ calling manufacterers for more info

Cross-contamination

Resources for gluten free dining

Gluten free baking tips - when applicable - some people are not interested in this aspect.

Resources for gluten free foods

Web Sources for more celiac disease and gluten-free info - I always refer people to this website as well as others.

Answer any specific questions about gluten-free status of foods, etc.

Are there other things that you wished the dietitian you talked with had addressed?

[Jnkmnky]

I liked how you considered some people don't want to bake just because they're going gluten free. I've been sent to several dieticians as I changed drs and they always began with the fact that I'd have to bake my own breads and I would have to use rice flour.... That's when I interrupted. The dr we saw last year began with that sentiment and when I interrupted it was to tell her that there's a vast market of prebaked goods available.

The best thing a newly dx celiac disease person can hear is that there are lots of great "regular" foods available in the grocery store. That the diet doesn't require a home mortgage loan. This disease isn't exclusively hitting the wealthy who can afford $5.oo loaves of bread for their family. It's insane. I think you have a great idea in the works! Very inspiring.

[nadinec]

HI

I just thought that I would give you my experience of the dietician that I saw last night. I am 3 weeks gluten-free and wanted to see her not so much for the gluten-free diet, but the other things; sugar, starch etc which is still giving me symptons. I wanted to know if I was on the right track and what I could do to make sure that my diet was getting all of the right things.

Anyway, she knew about celiac disease and started explaining about the diet and what I should and shouldn't keep away from.

Anyway, her take on it was that the celiac society was 100% gluten-free and in her opinion that was being anal. Her idea is that you souldn't be too concerned about contamination or the odd sauce when you go out to eat, that has wheat in it. Her philosophy is that you should be 90% gluten-free so that you don't end up binging on bread when you get sick of the diet...

She also told me that you should only be careful of the wheat, barley, rye, oat ingreidents or direct dervatives of them, but not to get concered with other things which have been through processing a couple of times beucase the gluten in them will be small.

Her final thought was that when my intestine heals in a few months I will probably be able to tolerate gluten.

Needless to say, I am not going back...

That is just my experience.

Thanks

Nadine

[Jnkmnky]

That's scary.

[Guest kmmolina]

I too would love to find a dietician that was knowledgable about Celiac that I could talk to. My doctor suggested that I see a dietician. I told him I was more than willing but I didn't want to pay to see someone that was just reading out of a book. I can do that myself. So far I have not found much of any support regarding doctors, dieticians, etc, in the Central Valley, California, except through this website. Again...I will probably say this at least another million times....thanks so much for sharing...Kathleen

[Guest imsohungry]

I've posted this in the past...I went to a nutritionist who was very sweet and I had two visits with her. However, she admitted to her limited knowledge and even said that I probably know more about Celiac than she does...and I was newly diagnosed! My insurance didn't cover her visits, so I paid out of pocket. For me, it was a waste of money. However, that does not mean that there are not nutritionists knowledgable on Celiac out there. Hindsight, I would have asked when I called if she had seen very many Celiac patients and if not, if she could refer me to a Celiac-competant nutritionist. -Julie

[Guest kmmolina]

Thanks Julie...I need to check it out with my insurance. It never occured to me that it might not be covered. They cover all that for diabetes. I will continue my serach...but again, this website has been so much help...Kathleen

[Guest imsohungry]

You're welcome!

In addition, like I said, it may be helpful to ask before you schedule an appointment if she/he has experience with Celiac. Any true professional is willing to admit areas of weakness and refer you to a collegue that is well established in working with particular health issues (i.e. Celiac).

Good luck! (Hindsight is always 20/20)

-Julie