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How Helpful Are Dietitians?


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#1 nvsmom

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Posted 13 July 2013 - 06:37 AM

I get an email/newsletter from Sarah Patrick on celiac tips, facts and info every few weeks. The latest email discusses the role of a dietitian in helping celiacs; it basically says a dietitian is of no assistance to helping a celiac eat gluten-free. I found that a bit surprising and was wondering if those who saw a dietitian found them helpful?

 

I never saw a dietitian, but I'm the type who reads and researches a lot so I felt no need for one. Plus I found this forum and learned a bunch from other people's experiences (and recipes). I doubt I would ever see a dietitian because I have read multiple books and articles on nutrition and health.

 

What do you all think, is a dietitian helpful? Could they be helpful if they had more training in gluten-free foods? Are they helpful for some, who don't like to research (this is what I think)?

 

The email is below:

 

Gluten Fact of the Week

A recent study cast doubt on the viability of doctors
referring newly diagnosed patients to dietitians.

In this study, researchers associated with the Celiac
Disease Center of Columbia University compared two groups
of patients. The first group consulted a dietitian at least
once, while the second group never consulted a dietitian.

The two groups were compared using three accepted methods
for measuring celiac disease status: quality of life (QOL),
celiac symptom index (CSI), and the celiac disease adherence
test (CDAT).

The researchers found no difference between the two groups.

While they were quick to point out how this research is
just preliminary and more variables need to be considered,
the general gist seemed to question the role of dietitians
in celiac disease treatment.

Sarah's Take

I don't feel this is enough evidence to dissuade individuals
from seeing a dietitian.

I think, instead, that there may be additional elements we
need to consider and control to make working with a
nutritionist or dietitian worthwhile.

Does the dietitian really understand and treat celiac
disease and gluten sensitivities? If not, you may just
receive generic advice not applicable to your circumstance.
Some dietitians are technically dietitians but really just
have an interest in weight loss or muscle gain.

I encourage you to research gluten intolerance nutrition
before you visit the dietitian, then in that first visit
you should tactfully interview the dietitian to determine
whether this relationship will really work for you.

Additional questions to consider:

Is blood work done before the first visit and then again
upon reaching six months of celiac treatment? If you don't
know what deficiencies you developed you can't sculpt a
proper plan to address those deficiencies, and if you don't
do follow-up blood work you won't know how that plan is
working. Unfortunately, this sort of close technical
observation seems to be rare in modern medicine.

Are follow-up visits maintained? There is no one answer
for all, so adjustments may be required as the dietitian
learns where a patient is having difficulty.

This also requires honesty on the patient's part. Too many
people let pride color and protect how they're really
living their lives when they go in for these visits.

If you're not really following the dietitian's advice,
you gotta let him or her know. And if you disagree with
the dietitian's advice, you also have to let him or her
know. The dietitian may agree to refer you to another
dietitian. But it's a waste of her time and your money if
you just roll your eyes after each visit.

Like so many other things, this isn't a simple matter of
flipping a switch. You can't assume 1. saw dietitian
thus 2. got better.

I know many people like to just use the Internet in place
of formal help, but there's no replacement for a
knowledgeable and caring professional who has dedicated
his or her career to sculpting a healing diet for patients.

 


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#2 bartfull

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Posted 13 July 2013 - 07:56 AM

I didn't see a dietician but I did see a nutritionist. She admitted that I knew more about nutrition than she did. (I had done lots of research before seeing her.) She knew the basics of celiac disease but wasn't aware of how critical it was to avoid CC. (She gave me a supplement that contained wheat grass, claiming that there couldn't be gluten in it because it hadn't sprouted yet. But as we all know, the chance of CC in wheat grass is far to great to risk it.)

 

Where she DID help me was figuring out why I was reacting to things like sweet potatoes and lettuce. She explained that my immune system was, as she put it, in hyperdrive, and that I was probably reacting to pesticide residue. She suggested I go completely organic for a while, and it worked.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#3 cap6

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Posted 13 July 2013 - 10:24 AM

my first dietician printed off some infor from the internet (that I already had) and gave me a diabetic diet.  I was month four into G.F. and knew far more than she did.  Searched further and found someone wonderful that was with the Warren Foundation in  San Diego who spent a lot of time with me and got me going on the right track.   

Bottom line.... important to find someone who knows what Celiac is and all the ins and outs or it doesnt work. 


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#4 cyclinglady

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Posted 13 July 2013 - 10:57 AM

I asked my GI about a dietician and he didn't recommend one.   Said that he used to refer patients but typically they'd know more than the dietician.  It was okay for me since my husband has been gluten-free for over a decade, but what about new patients who haven't a clue?  My heart goes out to them.


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#5 bartfull

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Posted 13 July 2013 - 11:24 AM

I asked my GI about a dietician and he didn't recommend one.   Said that he used to refer patients but typically they'd know more than the dietician.  It was okay for me since my husband has been gluten-free for over a decade, but what about new patients who haven't a clue?  My heart goes out to them.

With most people having access to the internet, I think it is a lot easier for people now. And of course, most often, goolgling anything about celiac will bring folks to this site. This has been the best education most of us could ever ask for. As a matter of fact, this site (IMO) should be required reading for all doctors and medical students.


  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#6 nvsmom

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Posted 13 July 2013 - 12:20 PM

 As a matter of fact, this site (IMO) should be required reading for all doctors and medical students.

 

I think you are right! :D


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Nicole Posted Image

"Acceptance is the key to happiness."

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Hypothyroid - August, 2012

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#7 GottaSki

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Posted 13 July 2013 - 12:34 PM

My Celiac Doctor sent me to the dietician affiliated with their Celiac Center (at the time) -- wasn't covered by insurance -- so I paid $100 and waited three weeks for an appt in which she explained what gluten was and which processed foods already are gluten-free -- it was sad really -- I had already been researching Celiac for six weeks at that point and she had nothing to offer me -- although I was happy at the time to learn Cheetos were gluten-free -- not worth a hundred bucks -- now she is a gluten-free nutrition lecturer -- lol...I recently stopped in at a local gluten-free expo to hear her speak -- it seems she has learned a bit more, but I think this forum and those members that came before me have much more "real world" celiac knowledge.

 

If someone is diagnosed and does not wish to research how to change their diet -- a nutritionist that specializes in Celiac Disease would be a very good idea -- my only suggestion would be a dietician WITH celiac disease -- not just one familiar with celiac disease.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 Adalaide

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Posted 13 July 2013 - 01:03 PM

I didn't see a dietician or nutritionist, I really saw no point. By the time I saw my doctor for an appointment after my biopsy results I had had an entire weekend to spend on the internet and knew more than I ever wanted to and more than enough to get started. Certainly more than I would have learned in a first appointment. I do think though that there is a distinct need there for people who are just not equipped in the way many of us are to head out to the internet and take things into our own hands.

 

To that end, my goal once I am well enough to attend college again is to become one myself. This has been playing in my mind for some time, and I'm not sure when I will reach the point I can attend college again. But, because I know there is such a lack of specialty, I know I can fill a distinct need. Also, because there is a somewhat distinct overlap with diabetes and I have spent time with a dietician about that with my husband and spend a lot of time focusing on that in the house as well, I feel I will be able to address that with real world experience as well. If not from first hand experience in having the disease, at least in first hand experience in helping to manage the meal planning, carb counting, and such that goes with it.

 

I don't think seeing a dietician should be a waste of time or money. I only think that most of the time it is, which is sad.


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#9 bartfull

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Posted 13 July 2013 - 04:03 PM

Addy, you will make a WONDERFUL dietician!! You have the experience and you have a great way of communicating with people. Just think of all the people you will be able to help! I (like so many on this board) am proud to know you!!


  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#10 nvsmom

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Posted 13 July 2013 - 05:46 PM

I agree, Adalaide. That sounds like a great fit!


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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#11 GottaSki

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Posted 13 July 2013 - 07:34 PM

I make it a third....Addie has a new goal.

 

Gotta admit...it may be where I end up.... the amount of school ahead to be instrumental in research before I'm officially a senior citizen is proving a bit problematic for my current plan ;)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 mbrookes

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Posted 14 July 2013 - 01:35 PM

When I was in the hospital (when they found out I had Celiac through a biopsy) they sent a dietician to see me. I had never heard of Celiac, and evidently neither had she. She did give me a booklet full of errors (never eat vinegar of any kind, drink only potato vodka, etc.) told me to google Celiac. I did and landed here... Thank Goodness. What a lifesaver.  This was 6 years ago. I hope she has learned more. I surely have!


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#13 psawyer

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Posted 14 July 2013 - 07:07 PM

When I was in the hospital (when they found out I had Celiac through a biopsy) they sent a dietician to see me. I had never heard of Celiac, and evidently neither had she. She did give me a booklet full of errors (never eat vinegar of any kind, drink only potato vodka, etc.) told me to google Celiac. I did and landed here... Thank Goodness. What a lifesaver.  This was 6 years ago. I hope she has learned more. I surely have!

In addition to celiac disease I have diabetes. I went to see a dietitian after my celiac disease diagnosis. She totally focused on my diabetes, which was a 14-year-old issue that I had mastered. I knew more about the gluten-free diet than she did when I walked in her front door for my first (and only) appointment. That was after a short time reading. A complete waste of time and money--my time and my then-insurer's money.


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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#14 frieze

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Posted 15 July 2013 - 05:08 AM

I didn't see a dietician or nutritionist, I really saw no point. By the time I saw my doctor for an appointment after my biopsy results I had had an entire weekend to spend on the internet and knew more than I ever wanted to and more than enough to get started. Certainly more than I would have learned in a first appointment. I do think though that there is a distinct need there for people who are just not equipped in the way many of us are to head out to the internet and take things into our own hands.

 

To that end, my goal once I am well enough to attend college again is to become one myself. This has been playing in my mind for some time, and I'm not sure when I will reach the point I can attend college again. But, because I know there is such a lack of specialty, I know I can fill a distinct need. Also, because there is a somewhat distinct overlap with diabetes and I have spent time with a dietician about that with my husband and spend a lot of time focusing on that in the house as well, I feel I will be able to address that with real world experience as well. If not from first hand experience in having the disease, at least in first hand experience in helping to manage the meal planning, carb counting, and such that goes with it.

 

I don't think seeing a dietician should be a waste of time or money. I only think that most of the time it is, which is sad.

Addy, are you thinking of nutritionist, or dietician? dietician is the legally protected term, nutritionist can be anyone...the laws may catch up with that...

but, presently, you could do the nutritionist route now....


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#15 CarolinaKip

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Posted 15 July 2013 - 07:09 AM

I saw a dietitian a month after DX that my gastro suggested. She has a daughter that is Celiac and that is her focus.  She helped me in the knowledge of CC and gave me a "starter notebook" and  other info.  She continues to send out updates to me as well. So, yes, she was a huge help to a newbie and told me to join here :)

 

That being said, I'm not sure if a "regular" one would know as much. I agree, all DR should read this forum!

 

 

Best wishes to you!


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