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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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    • ChrisDun
      Yes he has had recent blood work.  Other than low ferritin everything else was normal 
    • trents
      @LizzieF, if you will be seeking repeat blood antibody testing after undergoing a more rigorous gluten challenge, make sure your physician orders the "total IGA" test to check for IGA deficiency. If you are IGA deficient, all other IGA test scores will be artificially low and this can result in false negatives. Can you list the blood antibody tests that were already done, the scores along with the reference ranges?
    • knitty kitty
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    • trents
      Welcome to the forum, @LizzieF! Yes, I also question whether or not your exposure to gluten before either the endoscopy/biopsy or the antibody testing was long enough or intense enough to render valid test results. Guidelines for the "gluten challenge" have recently been revised to recommend more intense exposure: at least 10g of gluten (about the amount in 4-6 slices of wheat bread) daily for at least two weeks leading up to the day of the blood draw or the procedure. But frankly, I would certainly give it twice that long to be sure. It is also very possible you are dealing with NCGS (Non Celiac Gluten Sensitivity) instead of celiac disease. They share many of the same symptoms but NCGS does not damage the villous lining of the small bowel. Therefore, not antibodies are produced and nothing will show up on a biopsy either. There is no test for NCGS and it is 10x more common than celiac disease. Some experts believe NCGS can be a precursor to celiac disease. Celiac diseases must first be ruled out to arrive at a dx of NCGS.
    • trents
      Chris, has your husband had a recent checkup with detailed bloodwork (CBC and CMP)? Has he been checked for vitamin and mineral deficiencies?
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