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Looking for post diagnosis celiac specialist in Orange Co or San Diego Co.


sddave

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sddave Enthusiast

After 3.5 mo. on gluten free diet I've been struggling a series of issues.   All blood work for vitamins and minerals are in range and my kidney is functioning properly.

But I'm getting very lightheaded/vertigo at times...gets worse while driving (even after having a snack).   I'm also having muscle twitching, stomach cramping, acid reflux (I think), and heart palpitations.    None of these issues have lessen as I've gone gluten-free.  In fact they seem to get getting worse/more refrequent for me.

Even though blood work are all in range,  I still take one Multivitamin, a B complex, and a magnesium pill.   All my blood tests were taken when I was off these pills for almost 2 wks.

So I'm will to travel anywhere in Orange County or San Diego County to talk to a celiac post diagnosis doctor.  Can anyone recommend one that deals with post diagnosis issues?    Thx.


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RMJ Mentor

Sheila Crowe at UCSD, head of their Celiac Center.  She also cowrote the book Celiac Disease for Dummies, which says that if you're still having problems after going gluten free, the doctor needs to keep looking.  I find the people who schedule the appointments there a bit obnoxious, but Dr. Crowe is very nice.

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cyclinglady Grand Master

She is now the head of the American GI Association.  Not sure if she is able to take new patients.  But she would be a great doctor to see!  

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I think a consult with a Celiac-Savvy dietician would be helpful.  I think Texas Jen recently visited one at UCLA and found it very worthwhile.  

sddave Enthusiast

Thanks for the suggestions.

cap6 Enthusiast

Dr. Newton is affiliated with the Wm. K. Warren Medical Research Center for Celiac Disease. The mission of the Center is to

  1. Advance the knowledge of celiac disease pathogenesis and to develop novel diagnostic and therapeutic advances,
  2. Increase the medical and local community's knowledge about celiac disease, and
  3. Provide expert clinical care services to optimize health and quality of life in patients with celiac disease.

 

As of 3 years ago (we have since moved from the area the Celiac dept there gave workshops and other training sessions.  Def check it out.  Excellent facility!

 

sddave Enthusiast
On 8/20/2017 at 0:46 PM, cap6 said:

Dr. Newton is affiliated with the Wm. K. Warren Medical Research Center for Celiac Disease.

As of 3 years ago (we have since moved from the area the Celiac dept there gave workshops and other training sessions.  Def check it out.  Excellent facility!

 

Thank you

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      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
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      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
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