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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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sharkbaitgirl

Looking For Dr In San Jose Area? I.e. West San Jose/campbell/cupertino/palo Alto

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Anyone recommend a doctor in West San Jose (or Cupertino/Los Gatos/Palo Alto) area?  

 

Anyone have experience with Stanford's Celiac Disease and Food Allergy clinic?  http://stanfordhospital.org/digestivehealth/celiacdisease/

 

What kind of doctor do I need? Do I go see a GI first or internal medicine?  I have not seen any doctors since I figure out it was the gluten making me ill.  All my previous doctors didn't have a clue why I was getting so sick.  I even had surgery (prior to gluten free lifestyle). 

 

Thanks to your forum and other sites like this I figure it out.  I tried the gluten free diet for a week.  I got better!!  OMG my eyes were open.  One week latter I added gluten to one meal.  With-in 45 min, after adding gluten (I had my last slice of sour dough bread) I was hanging out with my Toilette (again) with all my symptoms back again.   I went back to gluten free diet.  

 

I'm very gluten sensitive - just the smallest amount will set me off.  So as you can image I have zero interest in eating gluten for any amount of time just to get a test results or check a tic box saying I have Celiac's Disease or gluten intolerance.  My doctor must be willing to accept this.  

 

I have been on gluten free diet since spring of 2013.  

 

Sometimes I mess up only to find out I'm best friends with the toilette again and all of my symptoms return.  Then, I go back to figure out where I messed up and ate gluten.  This time it was toothpaste.  I never thought about toothpaste - UGH!!  I only used this brand from time to time so it was hard one to nail down and my food diary didn't include toothpaste. Now I'm going through all my shampoo, conditioners, soaps, etc..   Luckily I use a lot of Dove products so most of them are ok.  Plus I'm not one to wear makeup so I'm lucky in that respect.  FYI- Just because a hair care or other product says it's all natural doesn't mean it gluten free.  Just like food -  body care products include gluten.  Unlike food wheat/oat/barely/malt doesn't use the word wheat in the ingredient.  It's listed under some other chemical name.  UGH!! 

 

I'm tired of talking to doctors who have no clue.  During my journey to get here (prior to gluten free lifestyle) I even had nutritionist at Stanford medical center tell me to eat more carbs and gluten specifically.  This nutritionalist based her recommendation on my 6 month food diary.  I had been logging everything I ate for over 1 year but she only would agree to see the last 6 months.  I'm an endurance athlete so I'm very conscience about everything goes into my body.  My nutritionist told me she was very impressed I only ate whole wheat carbs.  Plus she told me I should eat more carbs - complex.. whole wheat food products.  This would resolve all my issues.  I was sent to see the nutritionist because my doctors had run out of options to explain why I was so sick. 

 

If my doctors would of know and been educated about gluten I don't think I would of ever gotten to the point where I needed surgery.  Again why I want a doctor who understands gluten issues or can even spell it. 

Edited by sharkbaitgirl

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Hi, I am also interested in a list of gastroenterologists in the South San Francisco Bay Area who specialize in Celiac.

 

The Stanford program is run by Dr Gary Gray.   He is very experienced but is also close to retirement.   I'm hoping to find a celiac specialist who will be doing this for a long time.

 

I'm also interested in finding a celiac specialist who is not afraid of Cyrex food sensitivity testing.   Most doctors won't get near these tests because there are too few peer reviewed studies showing efficacy to a large population.

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Sharkbaitgirl, the tricky part about celiac - in my opinion - is that there are usually sensitivities to other foods, not just wheat.  These are either cross reactions, separate but similar immune responses, or malabsorption like FODMAP issues.   It's actually incredibly difficult to manage all of this, and I question whether any doctor in the Bay Area really has all of the breadth needed to deal with the full scope of issues.

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