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Hi all- just an update - I went to the UCLA Celiac center last week to see their dietitian, Nancee Jaffe. 

Some background - I live in Texas and was diagnosed in 2016. I have seen 2 dietitians here who really didn't know that much about celiac. They have not been particularly helpful in providing evidenced based recommendations for the practicalities of a gluten free diet. 

Since I was going to be in the area, I decided to make the appointment.

(I find this sight helpful but in general, I am frustrated by conflicting advice, information that I find on the internet)

I have to say, IT WAS GREAT!  She has celiac herself for 10 years. She is down to earth, practical, and talks to the specialists at UCLA regularly to come up with a treatment plan for their patients. The advice she gave was solid advice. She provided evidence for a lot of her advice and she had reasonable well-thought out answers to some of the tough questions (how to eat out safely, how to travel, what to do about oats in food, etc)

I would definitely recommend her to anyone who has ongoing questions about a gluten free life-style, refractory celiac, new diagnosis.

 

 

 

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26 minutes ago, TexasJen said:

Hi all- just an update - I went to the UCLA Celiac center last week to see their dietitian, Nancee Jaffe. 

Some background - I live in Texas and was diagnosed in 2016. I have seen 2 dietitians here who really didn't know that much about celiac. They have not been particularly helpful in providing evidenced based recommendations for the practicalities of a gluten free diet. 

Since I was going to be in the area, I decided to make the appointment.

(I find this sight helpful but in general, I am frustrated by conflicting advice, information that I find on the internet)

I have to say, IT WAS GREAT!  She has celiac herself for 10 years. She is down to earth, practical, and talks to the specialists at UCLA regularly to come up with a treatment plan for their patients. The advice she gave was solid advice. She provided evidence for a lot of her advice and she had reasonable well-thought out answers to some of the tough questions (how to eat out safely, how to travel, what to do about oats in food, etc)

I would definitely recommend her to anyone who has ongoing questions about a gluten free life-style, refractory celiac, new diagnosis.

 

 

 

That's great! Feel free to add some pearls of wisdom!

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I think the most important thing I took away was to check the source of all oats that you eat. Many people label oats as gluten free even if they are CC'ed. I do like cereal occasionally in the morning. Often times I have bought gluten free cereal but not really scrutinized all of the ingredients. I will start doing that now. 

In fact, I just contacted Barbara's Bakery and got a very vague answer about their oats. I sent a followup question and am still waiting to hear back from them. I may not be eating those anymore depending on their answer.

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7 hours ago, TexasJen said:

I think the most important thing I took away was to check the source of all oats that you eat. Many people label oats as gluten free even if they are CC'ed. I do like cereal occasionally in the morning. Often times I have bought gluten free cereal but not really scrutinized all of the ingredients. I will start doing that now. 

In fact, I just contacted Barbara's Bakery and got a very vague answer about their oats. I sent a followup question and am still waiting to hear back from them. I may not be eating those anymore depending on their answer.

I've had some ill effects this week which I'm 90% certain link to a bag of 'gluten-free' muesli which I recently bought from a UK supermarket. The oats within it are labelled gluten-free, but I'm either getting cross contamination or reacting to these oats in themselves. Just wish I knew which! 

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Gluten free oats are safe for the vast majority of celiacs.  The issue now seems to be the purity of the oats.  Are they grown in dedicated fields or grown in or near wheat fields and then mechanically sorted?   Are they tested?  This is discussed on the Gluten Free Watchdog site which anyone can access.  

You know, some big companies have invested a lot of money into developing and marketing a mechanical sorting machine for oats.  They are probably not just putting those sorted oats into their little round cereal.  Bet they are selling it to others who manufacture gluten free products.  Just speculation on my part.  

@TexasJen, thanks for the dietician referral!  So many of us were just diagnosed and then shown the door.  "Um...do not eat gluten.  Here is a list of restaurants who have some gluten free stuff.  Good luck! ".  In defense of my GI, I declined the offer of a dietician since my hubby had been gluten free for 12 years.  I knew the drill, but so many newbies are left to fend for themselves.  I can imagine that dietitians are trained to council celiac patients, but it is wonderful to work with one who actually has celiac disease.  

For those who can not access a dietician, celiac.com is an excellent resource.  Lots of published articles and a community of people dedicated to helping each other!  

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