Need To Vent

[mbg98]

So I need to vent, newly diagnoset via biopsy and bloodwork. I received a phone call from my GI doc's seccretary telling me I had this and they were setting me up to meet w/a nutrisionist in a week, no explanation onther than Celiac disease has something to do with wheat intolerance. I got off the phone very confused, I called back and asked the doc to contact me, he did and explained a little about it, told me to look it up on the internet and go over things with the nutrisionist she will be more help than he because all he can do is diagnose. Well in that week I researched the internet, got/read books, found you all (a lifesaver by the way) and was looking so forward to seeing the nutrisionalist. SHE WAS AWFUL!!!! We went in her office she gave me a booklet (6 pages) on a Gluten-free diet and then searched her computer to print out to more things that basically defined Celiac disease and it's symtoms. She asked what we have found out about it and told her we have been researching, she then said "okay, i don't know what i can tell you that you haven't already read" My husband asked her to proceed as if we knew nothing and all she did was go through the booklet with me regarding wheat and it's by products. After reading all these message boards I had some questions about cross contamination and how careful I should be. She told me don't worry about it , it's not a big deal the worst that will happen is I will get some cramping and D, but I would really have to get a significant amount of wheat through cross contamination for that to happen! she told me don't worry about products since i am not ingesting them and then said if you want a handful of pretzels every now and again eat them it's not as if you are allergic to shellfish or peanuts and your throught will swell and you could die the worst that will happen is GI issues! She was AWFUL!!!! When I read the booklet at home later #2 on the Must read section states watch for cross contamination even trace amounts can harm you!! I can baisically sum my experience up like this: Imagine going to your doctor for gallbladder issues(like I did) through bloodwork he finds you have Diabeties, his secretary calls you to give you the news, when you finally get to talk to the Doc about it he tells you yes you have it but go see a nutritionalist they can explain things to you better than I. You go to the nutritionalst and she tells you you have diabetes don't eat sugary foods! That sums up how i felt through this whole process. if it weren't for you all and these message boards I would go crazy!!

Anyway thanks fo letting me vent! Im off to work now!!!!

[RoseNNJ]

I am pretty new to this too. It really amazes me realizing how little "the professionals" know. I have learned more on this forum than from anyone else (who are getting paid) can tell me! As someone posted, gluten is posion to a celiac. Why she said a few pretzels won't hurt is unbeleivable! What an A**!

Everyone here knows so much. It is a great support team.

[Guest Robbin]

[quote name='mbg98' post='114918' date='Mar 16 She told me don't worry about it , it's not a big deal the worst that will happen is I will get some cramping and D, but I would really have to get a significant amount of wheat through cross contamination for that to happen! she told me don't worry about products since i am not ingesting them and then said if you want a handful of pretzels every now and again eat them it's not as if you are allergic to shellfish or peanuts and your throught will swell and you could die the worst that will happen is GI issues! She was AWFUL!!!! When I read the booklet at home later #2 on the Must read section states watch for cross contamination even trace amounts can harm you!! I can baisically sum my experience up like this: Imagine going to your doctor for gallbladder issues(like I did) through bloodwork he finds you have Diabeties, his secretary calls you to give you the news, when you finally get to talk to the Doc about it he tells you yes you have it but go see a nutritionalist they can explain things to you better than I. You go to the nutritionalst and she tells you you have diabetes don't eat sugary foods! That sums up how i felt through this whole process. if it weren't for you all and these message boards I would go crazy!!

Anyway thanks fo letting me vent! Im off to work now!!!!

[IronedOut]

There are nutritionists out there that can be helpful. They are few and far between and take a good deal of reasearch to find though. I had the same experience as you when I went. I knew more than she did about Celiac and the eats and don't eats. Since I waited a while before going, I was able to provide a list of what I was eating. She helped me analyze where my nutrition gaps were. I was very specific about asking for real world suggestions to complete my diet. As far as I can tell, that's about as good as it gets unless you find a that rare exception. Celiac is just too unknown in the US.

[penguin]

Moving more along the diabetes line...

Saying you can have a little gluten here and there because you aren't technically allergic is BS. Diabetics aren't allergic to sugar, but it sure as hell hurts them, even in small amounts!

My Dr. told me it wouldn't be worth my time or money to see a nutritionist, because I would learn more doing my own research.

[eeyor-fan]

So I need to vent, newly diagnoset via biopsy and bloodwork. I received a phone call from my GI doc's seccretary telling me I had this and they were setting me up to meet w/a nutrisionist in a week, no explanation onther than Celiac disease has something to do with wheat intolerance. I got off the phone very confused, I called back and asked the doc to contact me, he did and explained a little about it, told me to look it up on the internet and go over things with the nutrisionist she will be more help than he because all he can do is diagnose. Well in that week I researched the internet, got/read books, found you all (a lifesaver by the way) and was looking so forward to seeing the nutrisionalist. SHE WAS AWFUL!!!! We went in her office she gave me a booklet (6 pages) on a Gluten-free diet and then searched her computer to print out to more things that basically defined Celiac disease and it's symtoms. She asked what we have found out about it and told her we have been researching, she then said "okay, i don't know what i can tell you that you haven't already read" My husband asked her to proceed as if we knew nothing and all she did was go through the booklet with me regarding wheat and it's by products. After reading all these message boards I had some questions about cross contamination and how careful I should be. She told me don't worry about it , it's not a big deal the worst that will happen is I will get some cramping and D, but I would really have to get a significant amount of wheat through cross contamination for that to happen! she told me don't worry about products since i am not ingesting them and then said if you want a handful of pretzels every now and again eat them it's not as if you are allergic to shellfish or peanuts and your throught will swell and you could die the worst that will happen is GI issues! She was AWFUL!!!! When I read the booklet at home later #2 on the Must read section states watch for cross contamination even trace amounts can harm you!! I can baisically sum my experience up like this: Imagine going to your doctor for gallbladder issues(like I did) through bloodwork he finds you have Diabeties, his secretary calls you to give you the news, when you finally get to talk to the Doc about it he tells you yes you have it but go see a nutritionalist they can explain things to you better than I. You go to the nutritionalst and she tells you you have diabetes don't eat sugary foods! That sums up how i felt through this whole process. if it weren't for you all and these message boards I would go crazy!!

Anyway thanks fo letting me vent! Im off to work now!!!!

When I was first diagnosed I had a similar problem. After 2 very costly visits to a nutritionist who was supposed to be helping me, I had one piece of paper with barely any info (and most of it was wrong) and sent out to go shop. She never gave me a list of ingrediants I couldn't have, really had no clue where I could shop or what brands I could have. She never helped me in any way and every store I left I was in tears. Finally I knew I had to face this disease and getting the knowledge I needed by myself. I delved into everything I could find on the subject, wrote over 200 companies in 3 weeks, and found a good mentor in JenVan (aways my ObiWon). It does get easier as you get the hang of it though, and it becomes a way of life. The first couple months are the worst. My only advice is: Get advice from other celiacs but never depend completely on anyone but you because none of us has all the answers in this Celiac Family. Always contact companies. Don't get consumed or obbsessed like I did because it will take a toll on your health (thats a whole other story). Always help other celiacs who come after you and try to educate non celiacs. Don't get stuck dwelling on the bad things, or the being sick...life is what you chose it to be and it can either hold you back or it can show you a whole new way of life! I'm here for ya!

Hugs

Bridge

[tiredofdoctors]

Instead of going to a nutritionist, perhaps you could try going to a registered dietician. I found one in our community, and she was highly knowledgeable. In fact, she just sent more follow-up information to me yesterday. She spent 2+ hours with my husband and me, and gave me a lot of valuable information, free samples of things that she had picked up at a forum, and I'm now doing a daily dietary intake information sheet for one month so that we can have a follow-up. She is coordinating now with my endocrinologist to receive the information she needs to modify my diet according to results of new testing, and to boot, she only charges $75.

I was very happy with the results, and would recommend that you look under dieticians vs nutritionists -- then interview them with regard to their experience with celiac. It really worked for us.

[mamaw]

I agree with others that you can learn more by doing your own research.I don't know when the U.S. doctors are going to figure this out that it isn't okay to cheat. It seems they no nothing about the effects on a persons system if they eat wheat & gluten. And then we pay them big bucks for their igorance. I know that our local gastro doc told my daughter & myself to come back when we were comfortable with this and educate he & his staff........... I almost said for a fee!!!!!Needless to say neither of us have been back .

I know for a fact I've learned more from this group than any doctor knows from going through med school.In a way I don't think they even really care to learn in less it happens to them or their loved one.I know there are some good ones out there but not where I live.

Be patient and keep followering the threads here and you soon will be so informed on the subject , you will then be able to help others with compassion and knowledge.

good luck

mamaw

[jerseyangel]

I hate to make generalizations about this because I know that there are knowledgeable dietitians out there--but from what I read here, they can be few and far between. I considered going early on, but honestly, I have gotten all of the practical advice I need here.