Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

UCLA Celiac Center


TexasJen

Recommended Posts

TexasJen Collaborator

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.

 

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Victoria1234 Experienced
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!

  • 2 weeks later...
TexasJen Collaborator

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.

Jmg Mentor
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! 

cyclinglady Grand Master

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!  

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,315
    • Most Online (within 30 mins)
      7,748

    Steffieg
    Newest Member
    Steffieg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
    • trents
      Welcome to the forum, @Mrs. Cedrone! Among the various causes for canker sores, are "Nutritional problems like too little vitamin B12, zinc, folic acid, or iron" https://www.webmd.com/oral-health/canker-sores Could you be deficient on something?
×
×
  • Create New...