Trip To Dietician (rant & Long)

[bluesky8130]

Well we have visited the dietician and wow, what an experiance. At the beginning, she told me that I probably knew more than she did...what a confidence booster that was. She had asked me how long ago hubby was diagnosed (just over 1 month) and what have I done so far. I let her know that I have decontaminiated my kitchen, got rid of the toaster & got new pans (after hubby wasn't getting any better & teflon was scratched) and that the only gluten in our house is one box of cereal for my 11 y.o. son. She thought I was going to far. She told me that I could of washed the toaster instead of replacing it...I'm not sure how that can be done but whatever...it is already done.

She asked me if I knew what to look for on lables & I said I did then pulled out my list. She then continued to tell me what he could not eat...telling me 3 times that he could not eat oats.

By this time, hubby came into the room and she was asked him if he was feeling any better (which he is not) and asked how long he had been gluten-free (since Aug 20). When he answered that he was not feeling any better at all, she said "you should be by now...it should only take about a week to elimante the allergens from your system" and what was he eating every day. He listed off his menu for most days and then mentioned that he recently tried moving to lactose-free milk to eat with his cereal in the morning to see if that would make any difference. She didn't seem to think this was necessary because he has never before showed symptoms of lactose intolerance before & he should stick with skim milk. According to her, most people who are lactose intolerant people can tolerate....ummm ok.

She gave me a handout from a book I already had (can't remember the name) then told my hubby he should get rid of the dairy in his diet for a few weeks, not just move to lactose-free dairy, including yogart. Now I'm not about to tell her how to do her job but I have been severly lactose intolerant for many, many years (almost 20) and I have always been able to have yogart because of the active bacteria in it...and have not been able to have any milk, not even 1/2 a glass, without being very sick.

She then asked him again what he was having for breakfast to which he replied...gluten free cereal & lactose-free milk with a cup of coffee. She recommended that he switch to something else & he asked what. Her answer.......oatmeal. I couldn't believe it!!!! That was when I lost all confidence in this woman! At this time, he asked again how long until he should start feeling better....now here answer was "a few months"!! What happened to a couple of weeks??

I am glad that I have found some great resources for information that seems to be much more reliable than she is...thank you all for listening & advice I have recieved already from each of you.

Kim

[Canadian Karen]

Hi Kim,

Sorry to say, but that is soooo typical of the limited knowledge of a dietician when it comes to celiac disease and the gluten free diet....... As far as I am concerned, they are a pathetic waste of time (and money if you happen to have to pay for a visit to one.....)

It really bothers me actually that these people get paid to sit there and give you second rate and inaccurate information!

Karen

[Nicolette]

Whoa. Don't like the sound of that. I've got my first appointment with a dietician on November 28th and i can only hope that she's better informed than the one from your experience. Actually, I'm not sure what i expect to get out of it. I know what to eat now, what's safe and what's not. I'm already on iron supplements for my anaemia, though i suppose she might recommend some B vits. I've got to make a food diary of four days length before i go, so i suppose she'll analyse that and tell me where I'm lacking, but what else should I expect?

Nicolette

[Canadian Karen]

You should expect to meet someone who knows maybe half of what you know about celiac disease and the gluten free diet.......

Karen

[Canadian Karen]

Actually, here is a thread regarding this:

Open Original Shared Link

and another:

Open Original Shared Link

Karen

[happygirl]

Unfortunately, I had a very similar experience (very negative) with a dietician. She told me factually incorrect information-I think she kept mixing up Crohn's and Celiac. Told me I couldn't eat certain vegetables!!!! I had been diagnosed 3 weeks, was clueless to Celiac before being diagnosed, and knew WAY more information than she did-and I told her. It was frustrating to keep correcting her. I didn't even make it to my car before I burst into tears. I have found way more reliable, up to date information from this site, thank goodness.

[floridanative]

I have not met with a nutritionist yet but listened to one speak at a Whole Foods gluten seminar recently and I was appalled that I knew more than she did about celiac disease anyway, and I hadn't even heard of it a week before! Feeling like this was just a fluke I was sure I'd find someone locally (live in large city) that would know more about celiac disease than me since I know very little. Did a google and found one Phd. nutritionist that listed Celiac as one of her focuses. I e-mailed her to inquire about the cost of meeting with her. She responded (without mentioning her fee) and said if I did have to go on a gluten-free diet, it was pretty easy to follow and I'd feel better in a couple of weeks. Well needless to say I won't be meeting with her! I'm not sure I won't be wasting my time meeting with any nutristionist. On the search I did, lots of nutritionists came up in my area but the Phd. doc was the only one who even listed celiac disease on her list of expertise! And she's no expert in my opinion. Think I'll get more out of reading some books I've seen listed here on the forum.

Tiffany M.

[gf girlfriend]

I have been seeing a nutritionist since May as I have had other issues related to having had a parasite from a snake/lizard for quite a while and recently found out my boyfriend has celiac disease. I have been doing a lot of research and what not and when I mentioned it to my dietician she knew what I was talking about and even suggested some supplents to try for him. My suggestion is to try to find one you like and don't give up! There are those out there that are knowlegeable and very willing to help but you may have to try the more natural healing areas. My boyfriend is not so sure about that part of it but he does what I suggest and has almost felt instantly better, but I don't think he is as sensitive as other people.

[bluesky8130]

Luckily, I didn't have to pay for the visit (glad to be Canadian) but did get a name of a GOOD dietician at the meeting of our celaic association the other day. Hubby also has a cousin who is a dietician that did a study on celiac but still didn't have much more info - at least more current info.

I am so glad to find a lot of info on the internet to help me out, as well as a couple of books.

I just hope that he starts to feel better soon....he is getting quite depressed and said if he is not better by Christmas he is going back to his old eating habits.

[tarnalberry]

Wow! I know people should be given credit for trying, but... man... that takes the cake!

[Cindy H]

That must be so frustrating. The dietician my son and I went to didn't know a lot but what she did say supported what I had read. The dietician my brother went to has celiac disease so she was extremely helpful.

This forum is more helpful than any dietician appointment.

[SharonF]

I had my dietician appointment right after I was diagnosed, and found out AFTERWARDS that a lot of what she told me was wrong. Ugh!

All she did was pretty much hand me some pieces of paper with recipes and food. The food listing said that Cocoa Puffs were okay (no they're not) and that processed cheese, like Velveeta was out (which it isn't).

I got to pay $50 for the privelege of wrong information.

[tiredofdoctors]

Okay . . . . I was going to ask my physician for a referral to a nutritionist, but your experiences have convinced me otherwise!

Bluesky8130 -- I am certainly glad that you didn't have to pay for the visit, but I think you should DEFINITELY tell whoever referred you about how inept this chickie was. As far as the lactose intolerance, I have a friend who also can tolerate (only) yogurt because of the active cultures.

I have learned so much from what I've been told on the forum and from what has been recommended to me (i.e., books, research, etc.). I think that it is very frightening that someone whose profession is to counsel with regard to nutrition, INCLUDING issues with regard to disease processes, is allowed to practice at such a poor level of knowledge and communication skills.

I'm glad you and your husband have already researched celiac disease and he is already gluten-free -- by the way, how DO you wash a toaster????? I just feel sorry for the patients she treats who don't have the means and/or ability to self-teach themselves. She could do some real harm.

[bluesky8130]

I had the same question.....guess you wash it very carefully.

should probably make sure its unplugged first

[Canadian Karen]

Boy, I wish we all had access to this dietician. She's obviously quite knowledgeable about celiac disease, with we all know is quite rare......

Open Original Shared Link

Karen

[Claire]

No dietician appreciation here for sure.

I have never been to one but I recently consulted a Naturopathic doctor who advises on nutrition as part of his intervention. He also is an accupuncturist. I will have my first accupuncture treatment at the end of the month. It is included in the price of the visit.

He was very knowlegeable about celiac. He had just returned from a Celiac conference in NH and was good enough to share conference notes with me.

I am so far quite pleased with him. You might try a Nautropath rather than a dietician. Claire

[tiredofdoctors]

Hi Bluesky8130! Liked the response to cleaning the toaster Wish I had thought of it! I think it would be kind of funny to take it to her practice and ask her to show you how to clean it so that it's fully gluten-free!

Hi Claire! too cool about the naturopath. DC's can practice naturopathic medicine to some extent, but our state outlaws "Homeopathic medicine" My primary care doc is actually an internal medicine doc who specializes now in Rehabilitative medicine -- he is VERY into alternative medicine, has a well-rounded practice, but doesn't have anyone in his office that is knowledgeable about diet vs. nutrition (supplements). He has strongly recommended accupuncture for me. Please let me know how it goes -- I'd like to know if it helps. It actually stopped my mom's migraine headaches -- she had the kind that lasted anywhere from 7-10 days and had had them for years. It was pretty amazing, so I'm sold on the idea. Good Luck!

[Guest BellyTimber]

A new thing out in the UK is Toastabags. They may be reused a number of times and the heat goes right through them onto the bread as normal.

They can be used when travelling and wanting gluten-free toast and using an ordinary person's toaster, thereby not picking up any contamination in the toast.

Not used it myself yet.

In the UK dietician and nutritionist are different, you see the first free of charge and the second you pay for. Their levels of knowledge vary. My dietician was not as bad as those described but didn't tell me anything I didn't already know from having gone gluten-free-WF some months earlier. She complemented me on my varied diet which was good. My nutricionist knows a lot of interesting biochemistry which helps my understanding but doesn't understand medical procedures so one has to be wary of her advice in that respect.

[paw]

About a year ago I was told I had a severe dairy intolerance and doc sent me to a hospital dietitian. No one was suggesting I had a wheat problem at that time. She is responsible for deciding the special diet of hospital patients and has a RD after her name. Ok, $30 co-pay.

She tells me to eat low fat, low sugar, no eggs because it is better for you. Then she told me that I should eat lots of whole wheat bread (it is good for you), then told me NO wheat bread because it all had milk in it. Then she tells me to start making WAFFLES (milk, flour, eggs topped with syrup) and eat lots of them to replace the bread. She had NO clue what she was saying. Every statement was a conflict with what she said before.

I called to complain but her boss was on vacation. I did get a phone consult with another dietitian who told me to skip the waffles but did not give me much information on what I could eat. I have not been eating bread much because finding it with no milk was difficult. I don't have a lot of faith that I will even get safe information if they suggest I go back to learn about a gluten free diet.

[Billygoat]

Eeks! Stories like this make my skin crawl. How is there are so few people in the medical world that we can use as resources. This disorder has been around for eons! It's not like it's a New thing. But then again, my step-mom is a registered dietician and when I told my dad that he couldn't be eating oats, and other glutened items (some meats, condiments, etc.) he was completely surprised. He and step-mom had no idea gluten isn't just in wheat. He was diagnosed GI about 8 years ago!!! I've only been a few years and I know more than he does.

Edited to add: I am also lactose intolerant and I cannot TOUCH yogurt. Get diahrrea so bad with that stuff - worse than milk and cheese!!!