I Saw A Dietician

[Guest talsop]

Well I saw the dietician yesterday and what a big waste of time. This gal didn't know nothing. A matter of fact I told her stuff that she wrote down for future use with other patients. I am so upset that these so called professional cost you a arm and a leg and don't know a thing about your disease.

I had this appointment set 2 wks. in advance, the least she could have done was a little research if she wasn't familiar with celiac disease. The last 30 minutes of our meeting I couldn't tell you what she said cause I was day dreaming and planning in my head what I was going to fix for supper

Deb, you were right when you said not to be disapointed because they aren't that educated. Maybe I will send you may question per email and you can ask you sister

I just needed to vent alittle, and you guys are great listeners. I do have one question, does anyone know of a good cookbook?

Thanks for letting me vent

Terri

[darlindeb25]

no problem--send away-------and get this --my mom had surgery in a 250 bed hospital in midland this week--while there my sister, dad, and i--all celiac went to the cafeteria to investigate what we could eat for lunch --judy asked the dietician what if anything was gluten free---she had no idea --had never heard of celiac disease--so judy said--you mean to tell me in a hospital this size you have never had a single celiac as a patient she didnt know --judy told her it is time she become informed --told her that there is not one person working in her own cafeteria that would have to turn away a celiac--everybody is trained in diets --wow huh--deb---we will answer anything we can to the best of our knowledge

[celiac3270]

Yes...I saw Anne Lee (the nutritionist that works w/ Dr. Greene--he takes the patients, she helps with the diets ) when I was 2 months into the diet...she told me a couple helpful things, but on the whole, by that point there wasn't much I was unfamiliar with. Dieticians aren't as helpful as your own research, other celiacs, and the board .

Two things she did tell me that were helpful, though: V8 is gluten-free and, regardless of whether you're Jewish or not (I'm not), stock up during the Jewish holidays because the food that's kosher and doesn't contain Matzoh is gluten-free! I went to her around that time, so I got a very good chicken noodle soup...and some other stuff...in a regular grocery store with the guarantee of being gluten-free....thought I should share that cause I was intending to awhile ago and forgot.

The soup I got was from this company: Open Original Shared Link and you can get their entire gluten-free list at the link I just inserted.

-C

[Guest imsohungry]

Hey celiac3270,

That Jewish Holiday info. is good to know! I had read that many Kosher foods are gluten-free/CF...I've been eating Hebrew National Hotdogs (they don't have whey...a milk protein in them). Most all processed meat does (i.e. sausage, pepporoni, hotdogs...got to read the packages very carefully). Anyway, thanks for the additional info.

-----------------------------------

You know something Terri??? I also recently went to see a nutritionist. What a letdown!!! She was sweet, but knew very little about Celiac disease. She opened up a textbook about Celiac and read to me out of that. I could have gone to the library and read the same text for free!

Anyway, she told me the "basic" things to avoid: wheat, barley,...etc. However, she knew absolutely nothing about the list of additives/ingrediants that I had printed from my home computer that may possibly contain gluten. She told me outright that I will learn more by myself and to keep researching it! And I paid $100. for this?!?

Thank God for the internet! And for you guys... we'll all survive as long as we keep teaching each other!

Maybe we should all ask for a refund on our dietician money and pool it together for a big "Celiac" luncheon! Hee hee (that $100 bucks I paid her would have paid for me to attempt and ruin at least 20 more loaves of gluten-free bread)

Much hugs. -Julie

[aaascr]

This seems to be the norm - I couldn't wait to see my dietitian (waited a month) - because I have allergies to most other proteins as well. She had my food journal and food allergy list a week before I went to see her. In the end, she actually told me that I knew more than she did about celiac. And I requested a dietitian with celiac knowledge - ha! The least she could've done is get online and do a celiac search, it still annoys me that I was charged for nothing. My doc gave me another name but I think I'm just going to wait until I have a specific need.

This site and board has been the most help so far!!

Alicia

[dbuhl79]

I've lucked out and gotten to see a GI doc that specializes in Celiac Disease in a University Hospital Digestive Health Center. Considering this, do you guys think if I get referred to see a dietician or nutritionist it would be worthwhile? Since they have a department that specializes in this, I would hope they're educated and have some purpose if they refer you!

Then again.. I'm really sick of my $30 co-pays! I won't even add up how many I've already chucked out, becaues it'll just make me cry!

[aaascr]

If they specialize in celiac disease then it would be worth 1 visit anyway!

[Rikki Tikki]

I totally agree they don't know as much as we can learn ourselves. It is really upsetting to pay to see a specialist and have them say they don't know much about it.

I had been wondering about kosher food because I have seen it noted on a lot of gluten-free food, thanks for the information.

The one I went to said not to eat salad because it is very hard to digest. Has anyone else heard this? What about salad dressing? It is so confusing to try and figure out what is gluten free. I went to the doctor yesterday and he said he couldn't believe that some chocolate candy bars have gluten in them!

What a life.....

[celiac3270]

I hadn't heard about salad being hard on the system, but for the time being, I'm avoiding certain fruits that are hard to digets: apples (unless u take the skin off of it), grapes, watermelon, etc. I am also avoiding acidic foods: tomatos, oranges, and most foods that contain them................if the doc. says so, it's probably true

[MichelleC]

I am very lucky. I live in the Boston area and got to see a dietician who has Celiac herslef. It was GREAT!

Then, took my kids to see one at Children's Hospital and while she was pretty knowledgeable, I still knew more than she did.

So, if you are in Eastern MA and want a name, let me know.

Michelle

[stef-the-kicking-cuty]

Hi Michelle,

i go to Boston once a year. Maybe I could make an appointment with this dietician who has celiac herself, when i'm there. Could you mail me some info? (telefone number etc.?)

Greetings, Stef

[mela14]

Anyone know of a dietician or dr in the Miami area? so far the dietician I saw gave me some recipes...after looking at them I laughed. some had muffins with oat flour or gorund oatmeal........hmmmmmmmmmmmm I aready told her that i couldn't do oatmeal. the other recipe had barley flour and orange marmalade........duhhhhhhh. and yet another with vanilla extract ...not even sure if that is OK.....but decided against all of them.

Any thoughts?

Mel