Visit To A Dietitian

[laurelfla]

hello, all!

i have lucked up and discovered free nutrition services at my university... my therapist recommended it last week and i met with a dietitian last Friday. it was a quick session, mostly just so she could get a feel for the way i was eating. she seemed fairly knowledgeable about things gluten-free, so i'm hopeful. i know that getting set up with a dietitian in the beginning is something that is recommended... now, what do i talk to her about?

obviously i want to collect as much info on being gluten-free as possible... she already gave me a couple of articles i hadn't read and referred me to Shelley Case's book (should i look into that?). one thing i know i want to talk to her about is getting enough fiber in my diet.

other than that, although it may sound like a silly question, what should we be discussing in our hour-long session next week?

[KaitiUSA]

Beware because many dietitians are misinformed. I was told by one that I could have Spelt( a form of WHEAT!!!!!)

Make sure you verify everything she says about products you can have though if you decide to go.

This site in my opinion is your best resource for info and for you to learn it and verify it yourself is the best way because it's hard to trust people when it comes to this because there is alot at risk.

[laurelfla]

yeah, i got some misinformation from my very first dietitian visit (a different person)... although it was unnecessarily restrictive, at least it wasn't harmful! (she told me to avoid all gums, emulsifiers, any alcohol but wine, rum and tequila, etc)

i've learned the hard way that the only way to be sure about gluten is to check it out myself...i guess what i am more interested in is knowing what kinds of nutritional issues concern us and how to eat better, since i haven't been well nourished in a while.

KaitiUSA, that's terrible that they told you you could have spelt!!

[LLRD]

This is my first post since I've been on this site (which has been over the past week or so). I AM a dietitian and I have to agree. They only teach us the basics about the disease in school and I'm now finding out alot I didn't know. Dietitians that work in hospitals may not come across this too often (or at least we don't know about it). There are dietitans who do specialize in this area who have probably a wealth of information. Others are probably more "generalists" and know to avoid wheat, barely, oats and rye and thats about it. I do know that Shelly Case is one guru on the topic.

As for myself I have been suffering with what I thought was IBS for about the past 4 or 5 years. I started having some symptoms after I had my son who is now six. I went through an awful divorce when my son was about 15 months. Then about a year or so after that my symptoms began to get worse and more frequent. The past 2-3 years have really been awful. I never really suspected celiac disease because I didn't have the classic symptoms. I had gone to a few GI docs last year who said IBS and gave me Zelnorm. Then about 4 months ago I started having another set of symptoms, pain and like a swelling around my belly button. Went to yet another GI and finally had some tests done. He too thought it was IBS. Had uppper and lower GI, and ultrasound. US showed gallstones. So about 3 weeks ago I had my gallbladder out. Eight days after the pain was gone but my other symptoms persisted (bloating, constipation, just felk icky) So I went on-line yet again (I am usually on an IBS chat site) to see if this was maybe due to the surgery and that in time it would go away. Well I stumbled across an IBS post about a doc telling her to avoid wheat. I figured "what have I got to lose?" Within one day I felt so much better. I couldn't beleive it. So I have stuck with it for the past two weeks and I feel like a new person. Now my GI doc had did the blood tests which came back negative. But now that I have been doing my own research I am convinced this is my problem. What else would explain it. I'm still probably not 100% gluten free but pretty darn close. I continue to do my own research to learn more. I have my follow up appt with my GI doc Friday and I can't wait to hear what he will tell me. I know he'll say it's not my dx. He'll attribute it to my gallbladder even though he said my bloating and constipation had nothing to do with gallbladder disease. The more I read the more it makes sense to me. Lack of concentration - you betcha. I thought I was just getting dumber. Fatigue I attributed to being a single mom and working full time. All I know is I feel so much better. I have to keep reminding myself this is real. I felt like crap everyday for the past 2 years. I haven't had a period in two years either (I'm 38) related?? I thought that was from all the running I do. Does this seem like celiac disease to those of you who have been officially dx'd. What's up with the blood test being so unreliable? I'm paranoid about everything I eat now. I don't want to mess up a good thing. I would greatly appreciate any help

[krisimon]

If it were me, one of the things I would discuss with your dietitian is the fact that there is gluten in many products, not just food. Examples are body lotions and creams, face creams, toothpastes, etc., If she can give you information on this, would you mind posting a listing of the products (other than food) that can contain gluten without our knowledge?

Thanks,

Chris

[darlindeb25]

LLRD--my sister is a dietician and celiac also. We have both been gluten-free for over 4 yrs now. Yes, it does sound like celiacs to me, if not celiacs then I would imagine that you are gluten intolerant. Deb

[ravenwoodglass]

  I have to keep reminding myself this is real.  I felt like crap everyday for the past 2 years.  I haven't had a period in two years either (I'm 38) related??

Yes it is, you going through early menopause because of the celiac disease, get yourself to your OB-GYN and ask him to test your hormone levels. The good news is you will most likely reverse this process by going gluten-free.  I went through this myself and at a recent visit to my GYN he told me not to be surprised if I start menstrating again (after over 6 years post-menapausal I'm doubtful about that but...)

Does this seem like celiac disease to those of you who have been officially dx'd.  What's up with the blood test being so unreliable? 

They just are, there are many of us that never show up on blood work. There is a fecal antibody test that is much more reliable you may want to ask for that if you still have doubt.

I'm paranoid about everything I eat now. 

We all know how you feel about that, check with manufacturors frequently and use as few processed foods as possible during the first few months.

I don't want to mess up a good thing.  I would greatly appreciate any help

Some of the best advice I have found is right here, welcome to the family and ask all the questions you need to. Best wishes.

<{POST_SNAPBACK}>

[tarnalberry]

If you're feeling fairly savvy navigating your way around labels, then I'd focus most on how to best get a healthy diet for your body. For me, I'd be asking about easy ways to get enough protein; for you, it sounds like asking about getting enough fiber is important. You might also ask about more obscure items that you may not yet have heard about. Do start by letting her know what you do know about the condition and the diet, however, so she knows not to go over things that you already know.

[VegasCeliacBuckeye]

I think most dieticians do not know the minutia of Celiac Disease.

They can pretty much tell you what is in many gluten free books' intro chapter, but beyond that, they are of little help.

Unless you find a dietician that has celiac disease (what a good career choice for someone!!), you are better off reading, researching and becoming a well-informed-educated Celiac...

JMO

[cmom]

Good luck seeing a dietician. When I was diagnosed, mine was pretty much worthless (not as a person, but as an advice giver). She told me I could eat Rice Krispies (they have malt). When I questioned her on it, she said "well, I don't know." She never really offered to help me figure things out. After two visits, I didn't return. A dietician who specializes in celiac would be a godsend.

[LLRD]

Thanks so much for all of your responses! I think some of you may have misread my post. I am a dietitian myself. I work in a hospital mainly dealing with tube feedings, fluid restrictions, cardiac diets etc.... When someone comes in requesting a gluten free diet we send up rice cakes. I totally agree with all of you who stated that RD's don't know much. We don't get great detail on the subject in school and I would have to agree that an RD who specializes in this area would be the best source. However I find that when I do my own research my background helps me tremendously. In fact I will be doing an in-service training in the spring to our kitchen and cafeteria staff about the gluten free diet. So I will educate myself and pass along to those working with the food! And I work in a good size hospital in the Detroit area. I bet they know nothing about cross contamination. I know I didn't unless you were talking about chicken.

Ravenwoodglass - I still have to get to the gyn. I am overdue anyway. I do run quite a bit so this may be the cause, but I have been running for nearly 16 years. Why all of sudden now would I stop menstruating? Could be both I guess.

Another thing I'm sure most dietitians don't know is the difference between celiac disease and gluten intolerance. Again I'm not sure which is my problem. All of this has been self diagnosed thus far as the Docs keep telling me IBS. At least the diet helps, for IBS it seems so hopeless.

So I will continue to research on my own. This website is great and there are many other good ones I've come across as well. Who knows, maybe this can be a niche in nutrition for me in the future!

I do have one food related question. Are all artificial and natural flavors off limits unless you contact the manufacturer. I think this may be the only thing left that I haven't totally elimated. Mainly in small amounts like in my coffee cream or in candy I think is otherwise safe.

Thanks again

[ravenwoodglass]

I do have one food related question.  Are all artificial and natural flavors off limits unless you contact the manufacturer.  I think this may be the only thing left that I haven't totally elimated.  Mainly in small amounts like in my coffee cream or in candy I think is otherwise safe.

Thanks again

<{POST_SNAPBACK}>

I always call the manufacturer for these, actually I have learned the hard way to call on everything that has even a remote chance of contamination as well as content.

You may want to call you GYN and ask if they will let you just get the blood test done for your hormone levels. It can be done after 6 months without your period. You are well past that point. Please get this checked out. Osteoporosis is a very real risk with an early menopause and you don't want to crack a bone running because you don't know you have it.

Hope you get some relief soon, best wishes.

[christa]

I haven't haad a period in almost two years. My husband and I would like to have children so this is aa problem. I also haven't been dx with celiac disease but I'm pretty convinced that's what it is. When I went to see what the problem was my estrogen was really low but all other hormones were normaal so the doctor says it's not menapause. I'm 29. I thought maybe it was because I was consuming gluten . I have only done the diet for 1 1/2 weeks so I don't know if it will help. I sure hope so. Oh I also don't have the typical symptoms. I have d and c but mostly c.

[SillyYakMom]

I am not sure what to ask since I have never been to one, but when I had DD the hospital said "You don't need to ask for anything special because we are a dietary hospital and know ALL about celiac." So when I had my lunch brought to me they gave me white bread! Yeah, that doesn't come from wheat at all.

[Survivor]

verify it yourself is the best way because it's hard to trust people when it comes to this because there is alot at risk.

<{POST_SNAPBACK}>

THAT was a good thing to say - Mary

[larmst]

Thanks so much for all of your responses!  I think some of you may have misread my post.  I am a dietitian myself.  I work in a hospital mainly dealing with tube feedings, fluid restrictions, cardiac diets etc....  When someone comes in requesting a gluten free diet we send up rice cakes.  I totally agree with all of you who stated that RD's don't know much.  We don't get great detail on the subject in school and I would have to agree that an RD who specializes in this area would be the best source.  However I find that when I do my own research my background helps me tremendously.  In fact I will be doing an in-service training in the spring to our kitchen and cafeteria staff about the gluten free diet.  So I will educate myself and pass along to those working with the food!  And I work in a good size hospital in the Detroit area.  I bet they know nothing about cross contamination.  I know I didn't unless you were talking about chicken.

Ravenwoodglass - I still have to get to the gyn.  I am overdue anyway.  I do run quite a bit so this may be the cause, but I have been running for nearly 16 years.  Why all of sudden now would I stop menstruating?  Could be both I  guess.

Another thing I'm sure most dietitians don't know is the difference between celiac disease and gluten intolerance.  Again I'm not sure which is my problem.  All of this has been self diagnosed thus far as the Docs keep telling me IBS.  At least the diet helps, for IBS it seems so hopeless.

So I will continue to research on my own.  This website is great and there are many other good ones I've come across as well.  Who knows, maybe this can be a niche in nutrition for me in the future!

I do have one food related question.  Are all artificial and natural flavors off limits unless you contact the manufacturer.  I think this may be the only thing left that I haven't totally elimated.  Mainly in small amounts like in my coffee cream or in candy I think is otherwise safe.

Thanks again

<{POST_SNAPBACK}>

[larmst]

I too am a dietitian and have been following a gluten free diet for about 15 years. I agree that many dietitians are not as familar with the diet as many of the patients that we see, thanks to the internet and sites like this one. In fact, my co-workers and I have found this site very helpful and have referred patients to it. I was prompted to respond on this thread because LLRD's story sounded so much like mine. I turned to a gluten free diet after about two years of doctors telling me my symptoms were all in my head and also related to stress. Within a week of going gluten free, I felt wonderful, so have continued to follow the diet. The last few years have seen so mush more information and so many more products are available. We have a wonderful store in our area that sells only gluten free products. We've utilized their products for our in patients who need a gluten free diet, so we don't have to be limited to rice cakes!

[ms-sillyak-screwed]

di•eti•cian and nu•tri•tion•ist were the topic tonight.

DaddyO and I were watching TV (something mindless I just can't seem to wrap my head around) but I was doing it to be with him. He was watching TRADING SPOUSES cute show, it had an attactive affluent Australian blonde living the NW and a disfigured and obese middle age hippy living off her two kids. Anyway the Australians hubby had a nu•tri•tion•ist that came to the house (in TV land) looked super hip and acted like he had it going on.

My point is nu•tri•tion•ist need to be educated and our best friends for life. So why don't we invite them to our support groups, celiac disease meeting and given them some incentive to spread the right words and HELP US!?

Tomorrow I'm going to see if I can find a nu•tri•tion•ist some how (in this hurricane mess) here in south Florida.

It seems all of a sudden what we type here is censored. I typed in the name of a hospital and it didn't appear on the post. And when I type in C D it comes back celiac disease > I looked up my local hospital to find a di•eti•cian last year when I began to realize my body was attacking itself and it was more than just Gluten and Dairy free for me. I needed information but she admitted to me she knew nothing about celiac disease. And everything she knew came from -- One guess? You got that right! RIGHT HERE! So we know more then they do. And I guess we need too in the times we all live in today. Sad isn't it?

I think a nu•tri•tion•ist is something different? NO? They are into nutrition aspect not so much the diet, aren't they two different things?