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Nutritionalists


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10 replies to this topic

#1 Guest_~wAvE WeT sAnD~_*

 
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Posted 26 July 2004 - 07:04 PM

I see my nutritionalist tomorrow. I'm trying to remain positive, but my mother heard about some displeasing experiences other patients had. Someone said that the nutritionalist just looked up the definition of celiac disease on the internet and simply started with the "little hairs that push the food down" etc, etc discussion.

Please--let me know if this type of specialist, or whatever category in which they fall, is trustworthy and helpful.

Thank you!!!!
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#2 flagbabyds

 
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Posted 26 July 2004 - 08:16 PM

If you are seeing a good nutritionalist who knows a lot about celiac disease then they can be a major help, but if they are clueless and know nothign about it then maybe try to look for someone better
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Molly

#3 debmidge

 
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Posted 27 July 2004 - 01:56 AM

The nutritionist we saw knew about as much as I did. I got my info from library and CSA. I went there expecting superior knowledge and all we got were the same things I ran into during my research. Unless the celiac disease patient is utterly clueless, the nutritionist is a waste of money. I feel the nutritionist should have Betty Hagman's books in their office to show you and the CSA product guide to show you (not to give to the patient, but to show that it exists).
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#4 Guest_Lindam_*

 
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Posted 27 July 2004 - 03:22 AM

I have seen two nutritionists. The first one was when I was in the hospital. She knew alot because her husband has celiac disease, so she was able to give me alot of info. The second one, was a waste of money and time. I had already done alot of research and gave her information, instead of her giving me info. In my opinion, joining this forum and chatting with others, is where I found most of my useful information as well as the strength to get through it.

Good luck! I hope you have a better experience!

Take Care!
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#5 Wish

 
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Posted 27 July 2004 - 12:51 PM

Hi again :-),

I understand where you're coming from regarding the nutritionist...the first dietician I saw was affiliated with my GI doctor and just printed a few sheets of paper from the Internet...as if I couldn't have done that myself and saved a heck of a lot of money <_< !

However, through the support group in my area I met a dietician who has Celiac disease himself. As I said in my response to your support group post, I'm not sure where Greenville, PA is or how close it is to Pittsburgh. If you can make it into Pittsburgh, though, I would really recommend making an appointment with him if the nutritionist you see isn't helpful. He spent 2 hours going over the gluten-free diet with me and then gave me a huge packet of information listing meal/snack ideas and providing the names of mainstream products that are gluten-free. Since he is both a dietician and a Celiac, I personally place full trust in the accuracy of the information he provides. If you're interested, just e-mail me and I'll give you his name and contact info. In any case, good luck in your quest to learn more about the gluten-free diet!
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#6 Guest_~wAvE WeT sAnD~_*

 
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Posted 27 July 2004 - 07:45 PM

Thanks all!

I met with the nutritionist this am--she knew how to calculate my calorie intake based on my weight, height, and age. She also knew the basic Gluten-Free no brainer foods (rice, corn, etc.). Although she didn't know a great deal about the special gluten-free products everyone has shared with me online, or the special goodies I buy at the store, she rewarded my knowledge by reducing the bill (she treated it as a fifteen minute follow up consulation--so instead of costing $52.50, it was $28).

She gave me a massive packet with a lot of good gluten-free recipes, which is helpful. My only concern was that many of those recipes contain wheat starch--but then I heard that if I didn't feel the need, I could replace it with my all-purpose gluten-free flower.
Yay!

She exceeded my expectations, and thank God she didn't go into the "little hairs on your intestines" bit.

She was satisfied with my food choices, too.
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#7 celiac3270

 
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Posted 28 July 2004 - 03:24 AM

With my nutritionist, I was already 2 months in or something, so I knew what I could and couldn't eat. Therefore, a lot of the basic stuff wasn't helpful. She did, however, recommend some products that were gluten-free.....unfortunately, many contain significant amounts of dairy. So, it wasn't as helpful as it could've been, but then again, I was already too far into the diet for it to be amazingly useful. I know you've already gone, Jill, but I just wanted to post my experience, anyway... :D

Glad you were satisfied and got helpful tips/recipes/suggestions. :)

-celiac3270
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#8 kvogt

 
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Posted 28 July 2004 - 08:49 AM

I wouldn't see any nutritionist who wasn't an active member of a celiac support group. I would ask if s/he goes to meetings, meets with celiac patients regularly, etc.
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#9 celiac3270

 
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Posted 28 July 2004 - 10:09 AM

I wouldn't see any nutritionist who wasn't an active member of a celiac support group. I would ask if s/he goes to meetings, meets with celiac patients regularly, etc.

Makes sense....I went to Anne Lee (a nutritionist who works with Dr. Green; one of the most famous celiac doctors in the US). I don't know if she goes to support groups, but she tries out her gluten-free stuff on family (who aren't celiacs, but still used as guinea pigs :lol: ). I trusted her, especially since she works for a really famous celiac dr..........

-celiac3270
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#10 Guest_~wAvE WeT sAnD~_*

 
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Posted 28 July 2004 - 11:45 AM

I see...she didn't really answer any medical questions, so I don't know if she's in touch with very many top celiac disease doctors.

celiac3270, thank you very much for your feedback! I appreciate hearing everyone's stories, no matter how far along I am :)

Thanks again!!!!
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#11 cmom

 
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Posted 01 August 2004 - 05:53 PM

The nutritionist I was sent to after my initial DX was also not very helpful. For example, she told me that malt flavoring was bad and then later told me I could have Rice Krispies (they contain the malt). When I asked her about this, she couldn't give me an answer.
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Robin from Indiana




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