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GlutenFreeAl

Anyone Seen A Registered Dietician?

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I'm thinking it might be a good idea - I've very paranoid about all of the vitamins and minerals that are probably absent from my diet. I've definitely seen a negative effect not only on my weight, but also in my hair and eyesight!

Anyone have any luck with a dietician? Any advice for finding a good one?

Thanks,

Al

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Al,

The GI that did my biopsy recommended that I have my GP refer me to a dietition. He said that although there is alot of great info on the internet, it would be best to seek the advice of a professional (face to face). I asked my GP about it and he said that he would make arrangements to refer me to a dietition. Well......the dietition that my doctor's office contacted didn't see the need to meet with me. She said that she would send me some information in the mail and that if I had any questions after reviewing them, I could give her a call. The info that I received from the dietition was really old - dates on some of it were from the early 90s.

Sorry for the ramble and to answer your question - no, I haven't "seen" a registered dietition.

I would also love to hear from others who have - is it worth it, and should I be more insistent on this?

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Most of what I've heard is that dieticians know little about celiac and are more prone to give wrong and harmful information than good and helpful info. I know it's a little depressing. There are some blood tests for minerals/vitamins that a doc can run if you're interested. I don't know too much about them.

I think the best thing you can do is eat a healthy diet that does not include gluten. I know that sounds duh, but really it's all you can do. If you like vitamins, then add a quality gluten-free multivitamin. If you are particularly deficient in something like iron (anemia) you can take special stuff for that. The deficiencies vary by person, so a dietician couldn't really give you general stuff.

Merika

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I saw a dietician. She didn't give wrong information. She gave such limited and limiting information that if I hadn't already found this board, I might have considered sticking with gluten.

Save your money for some good gluten-free food.

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Guest nini

I saw a dietician and it was obvious that I knew more about the gluten free diet than she did, all she could offer me was an outdated handout that said that buckwheat was part of the wheat family and to avoid it (buckwheat IS gluten free... ) She was really useless. I asked her how many people with Celiac she counseled and she said that I was the first. Well great! I left there very frustrated to say the least.

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I lucked out - my mom's best friend and neighbor is a registered dietician who's daughter has Celiac. She was very helpful in the beginning, recommending books and products. We've never talked about minerals and vitamins, other than her recommending that I take a multi-vitamin (which I had been doing).

Al, I'm not sure where you live - but I would recommend trying to contact a good hospital near you and seeing if they have a referral program. Just plan to spend an hour or two making phone calls, trying to find someone with a Celiac background.

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I had a similar experience with a dietician (i.e., lack of knowledge about Celiac) shortly after I was diagnosed.

However, I think that if you are going to a dietician/nutrionist armed with YOUR gluten knowledge, as well as 'menus' of what you eat on normal days, then maybe they can provide you with information in terms of what you need to supplement, etc. I think that they could be helpful in that sense! Now that you mention it, that seems like a good idea now that I have a handle on the "gluten free lifestyle"

Good Luck!

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The dietician I saw printed a bunch of stuff off the internetwhile I sat and watched, and then read it to me. She wanted to be helpful, but just had no idea. The best thing she did was point me here.

No mention of vitamins. I take a multi though.

Elonwy

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Guest SusieQ
I'm thinking it might be a good idea - I've very paranoid about all of the vitamins and minerals that are probably absent from my diet. I've definitely seen a negative effect not only on my weight, but also in my hair and eyesight!

Anyone have any luck with a dietician? Any advice for finding a good one?

Thanks,

Al

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Guest SusieQ

You can contact the American Dietetic Association and ask for a referral to someone with a background in counseling patients with Celiac Disease/Gluten Intolerance. Hopefully, they will have someone in your area. Another possibility is to contact your local hospitals and ask if they have anyone knowledgeable in these areas.

There is a group of dietitans with the American Dietetic Associaiton that belong to a Medical Nutrition Practice group. some of them belong to a sub-specialty called, Dietitians in Gluten Intolerance Diseases. These dietitians are trying to promote awareness, education and standards of practice.

The problem is that doctors don't refer very many of these patients to dietitians. It is a little hard to become experienced in a field and build up education materials if you never see patients dx. with these problems. The dietitians in the sub-specialty Gluten Intolerance group are trying to change this.

Personally, I think I've had all of two patients referred to me in about 30 years.

I hope this helps.

Susie

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My doctor sent me to the dietician and when I showed up she was scrambling for info. She was apologizing for not being prepared and admitted she usually deals with diabetics. She had a couple books on Celiac and was printing info off the CSA website while she talked to me. She was nice but didn't help me one bit. I had already aquired way more knowledge about the diet and I think she knew this and was embarassed.

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I originally went to a nutritionist for another problem in 1997. She's actually the one who told me (based on my symptoms) to avoid wheat. She was very helpful actually and put me on the right track at least.. I then realized that it was gluten I needed to stay away from, not just wheat. She also wasn't a 'dietician', but rather more of an alternative meds nutritionist.

It does appear that people with celiac disease, who like to research, and enjoy eating/cooking, are the best people to talk to.

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"ditto" to what everyone else said. I have been to a registered dietitian. She was moderately helpful. But we discovered later that some of her information was wrong or misinformed. I paid a LOT of money. My insurance did not cover any of it, eventhough it was prescribed by my doctor. I have learned more by talking with others and this web site.

sorry, but good luck

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My neurologist has a registered dietician in his office, but I'm too scared to make an appointment now -- what you guys have experienced is TERRIBLE. . . . Lynne

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My experience was very good - she was a real blessing. IMO you just need to research ahead of time - ask questions about her background, if she has experience with Gluten Free and if not maybe there's someone she could recommend. We're so used to reading labels - read her label :D before you go in.

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My neurologist has a registered dietician in his office, but I'm too scared to make an appointment now -- what you guys have experienced is TERRIBLE. . . . Lynne

The dietician that I talked with was really helpful. She had list of foods that were allowed and not allowed. I do not cook so she dicussed options with me as to how to do foods in the mocrowave. She also looked up certain foods that I was wondering about to see if they were safe foods. She has also monitered my weight since I have been anorexic in the past. I have the direct number to her office and can call her any time that I have a question or just need to talk. She has really been helpful to me.

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I found a RD in my city who knows about celiac!!!!! I told her that I have gluten intolerance (Ataxia vs. celiac), but still needed to be gluten-free for life. Told her, too that I want to lose weight, and it's just not happening. She said that she is very familiar with gluten-free diets -- wants me to bring the books I have, and she said that she has a wealth of information which she will be glad to copy for me. She actually took a course offered by Shelley Case, the author of Gluten Free Diet: A comprehensive resource guide.

She said that we're going to sit down and develop a game plan for me, with an outline of what I need to do and not to do in order to stay in my gluten-free lifestyle and still lose weight. I am EXCITED!

Unbelievably, I found her in our yellow pages. I looked under dieticians -- a lot of them advertised that they specialized in "institutional nutrition" -- mostly nursing homes, so I figured they wouldn't be a good fit -- they're used to adding or subtracting caloric content for patients. She was just listed independently, and I called and voila! And, to boot, she only charges $75.00 -- I can take it off my FSA. My husband and I are unbelievably excited. . . . Lynne

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Amazing, Huh????? I'm so cynical, though, I keep thinking . . . "there's got to be a catch -- there has to be something that's going to go wrong . . . " :( Just need to stay positive -- it's going to be a GOOD visit! . . . Lynne

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