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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Helpful Are Dietitians?
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25 posts in this topic

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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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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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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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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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.

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 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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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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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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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!!

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

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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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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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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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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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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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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....

 

Dietician. I have no desire to be some random moronic flake that has no background or standing but insists upon themselves and demands to be taken seriously. I also am not such an egotistical idiot that I would go out and simply start spouting off at the mouth the small amount of things I do know and insist they are the one true way to health and everyone else is surely wrong, which is what I have seen literally every nutritionist I have had experience with do. I'll pass thanks.

 

I understand that the rules and such can even vary state to state and blah blah blah. Because I haven't resolved my memory problem yet (I have almost no short term memory, a real problem for getting an education) I haven't contacted the local university to see if they offer a degree. I know U of U will, but that would be a heck of a drive, I'd probably just end up taking the train every day if we didn't move up to the city while I was in school.

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I agree, Adalaide.  Becoming a dietician is the way to go!  

 

I've been looking into what it would take to get my masters in nutrition with the track to dietetic internship from an accredited program, so that my end result would be to become an RD.  I had been thinking about it for awhile, but my younger brother really encouraged me to finally go to an information session at Drexel U in Philadelphia in the beginning of June.  I need to take quite a few prerequisites since my bachelors is in music, but I was happy to hear at the info session that a lot of those that get their masters in nutrition come from a non-science background.  I thought I was going to be the odd one out  :)  Now I'm looking into taking a basic nutrition course at my local community college to fulfill a prereq.  Plus I also thought I should take a nutrition course to make sure I enjoy it before I go full steam ahead  :lol:

 

I wish there were more accredited masters programs, but no such luck.  I live really close to University of Delaware, but only their undergrad program is approved  <_<

 

Here's the best site to find out which programs are accredited:  http://www.eatright.org/BecomeanRDorDTR/content.aspx?id=8156

 

Dietician. I have no desire to be some random moronic flake that has no background or standing but insists upon themselves and demands to be taken seriously. 

 

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its interesting this topic was at the top. I just saw a dietician for the first time last week.

After being gluten free for over two years and feeling good, I've had numerous health problems the last few months and was desperate for help.

She has put me on FODMAPs which I just started, while her knowledge of gluten free or Celiac wasn't anymore than I've learned here or other sites, she

did help me understand calories and set me up with a really nice online food diary to use where I can track symptoms also.

so while the jury is still out on if this will actually work, she did seem knowledgeable and had done a fair amount of prep and homework anticipating my appt.

crossing my fingers.

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We were sent to a dietician as pur kids were young and they wanted to make sure they got everything they needed to catch up on growth,many keep healthy. She was helpful with supplements, knowing which companies were certified gluten-free, when to take supplements, so they didn't take things with other supplements or foods that would counteract them. She could tell without look tests which things were low ie leg cramps she recommended calcium with magnesium, the next day no more leg cramps. Our dietician is a godsend, she's a infant dietician so understands kids are picky and are not going to eat the recommended daily amount of things, she advised us to looka t what they eat in a week to see if they are getting everything. She also helped us with constipation issues through diet so we couldvgetbrid of miralax

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I was thinking a nutritionist would be helpful to me, I don't know dietitian , nutritionist what ever, didn't know there was a big difference but I guess a nutritionist sounds more knowledgeable ..... I am waiting to see my Dr. So he can send me to someone that will be helpful. I am also wanting to get some Pro biotics. Never heard of them till I came in here. So it is something I will look into. 

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Our dietician is classed as a dietician by the canadian medical authorities, but her job title is child and infant nutritionist, whatever the title she's been very helpful.

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w8in4dave,

 

In the US, a RD (registered dietician) is the way to go because they've had the most formal training.  If you're in the US and want to find an RD who specializes in gluten intolerance use this site:

 

http://www.eatright.org/programs/rdfinder/

 

Once you go to the page, click search by expertise, select gluten intolerance, put in your zip code at the top of the page and search. hope this helps!

 

I was thinking a nutritionist would be helpful to me, I don't know dietitian , nutritionist what ever, didn't know there was a big difference but I guess a nutritionist sounds more knowledgeable ..... I am waiting to see my Dr. So he can send me to someone that will be helpful. I am also wanting to get some Pro biotics. Never heard of them till I came in here. So it is something I will look into. 

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TY yes i am in the US in Michigan. :) helps alot!! TY :) 

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The only useful information I received from the dietician when my daughter was in the hospital was her referral to this site!  The meals and "plan" she gave me were absolutely ridiculous for an eleven year old, and further to add extra calories to my daughter's diet she recommended Carnation Instant Breakfast which clearly states on the package that it may contain wheat.......

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In the UK I saw a dietitian. She was not very knowledgeable about celiac and gluten-free, but was very helpful to help me go through an elimination diet, and then to assess the foods I ended up eating and checking the nutritional value, and to keep up my weight loss. I found I wasn't getting enough calcium, and she was able to tell me to take it with vitamin D to improve absorption.

I took a list of questions on my 2 visits to make the most of the time, and kept a food diary for a few days before hand (an honest one :) ) so we had something to work from.

She was sceptical that I would stick to a whole foods paleo diet, and was very impressed with my success in terms of health and weight loss.

Good luck :)

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