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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? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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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sllee

Any Good Celiac Specialists In San Diego?

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After suffering from chronic diarrhea, cramping and a burning sensation in my stomach over several months and several doctor visits later (in which I tested negative for all kind of tests), it was suggested that I try a gluten-free diet and at the same time see a GI specialist. After reading about celiac disease, I was floored to see that the list of symptoms not only included my current intestinal problems, but symptoms that I've suffered from for years (chronic fatigue, mouth sores at least once a month, muscle pain, bloating and gas). Within days of being on a gluten-free diet, my stomach felt better and my diahrrea and cramping abated. Being a scientist, I even experimented on myself by eating whole wheat crackers and after about 2 hours was cramping up and having diarrhea for the next two days. I was on the gluten-free diet for over a month before I could see the specialist.

This guy was very cocky with me but after hearing about my symptoms, he went ahead and had the IgA and IgG tests as well as the genetic marker tests done. I warned him that I had been gluten free for at least a month, but even so, after seeing the tests - I tested positive for the genetic DQ2 marker, over 90% of celiacs carry this marker - and negative for the IgA and IgG tests, he said I was negative for celiac disease ...period. No offer for follow up tests, no recommendations for what to do next. As many people have already written on this site, I know my body and my symptoms and I know I have celiac disease. I've done a lot of reading and understand that these tests may not be definitive but I don't trust this creep and if I can hope to get a diagnosis in a reasonable amount of time, I need to see someone (in San Diego) who knows of and understands this disease. Thanks in advance to anyone who can offer information, support and/or advise!

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Let me ask my therapist. She's in SD, and said she knows a well-known doctor in the area. Have you tried calling Scripps and asking there?

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Actually, the specialist I saw is at Scripps (La Jolla). I look forward to hearing of any names though. Thanks!

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I think the one she was referring to was at UCSD, but it may take a while to get an answer for you. (I don't see her again for three weeks or so.)

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    • A mistake that many of, myself included, made! Don't feel bad about it, feel good that you've at least identified a possible cause. I was faced with a similar choice a few years ago and opted to go back onto gluten for a 'challenge' to see if I had celiac. I kept a food diary during this time and tracked the reappearance of symptoms, some gastro intestinal but primarily neurological. I tested negative for celiac much to my surprise, but the challenge confirmed gluten as an issue, so NCGS is best diagnosis I'm likely to get for now at least.  Your question re fructans is a good one and not easy to answer. The fact you've asked it suggests you've done some research and are aware of the unclear science once celiac is excluded. For what its worth I think that what may happen is that some people who get IBS relief from a gluten free diet are indeed correct to avoid the foods, but incorrect in identifying gluten as the cause.  They may actually be reacting to fructans, polyols, or other parts of the wheat,carbs rather than proteins.  However there are also well documented cases where gluten itself is the culprit, some more info on this here and I believe this is where I sit.   You need to decide what level of uncertainty you can live with. Medical assistance will depend on reintroducing gluten. If you do it with a food diary you may learn more about your reactions, maybe even be able to customise your diet to your own body. Most importantly, you would properly exclude celiac as a cause, which is important because its a serious condition and if you do have it, far better to know for both you and your family who may also want to be tested.  Finally, I collected some links and info here some time ago, it may be useful.  Best of luck Matt
    • I wish I had been diagnosed at 19. In retrospect, I was having symptoms as a 16 year old, and didn't get diagnosed until I was almost 30. That delay created a lot of havoc, and other problems that are now permanent (an aggressive case of rheumatoid arthritis and violent reactions to contamination). You want to be non-compliant? Your choice... but the symptoms will most likely get worse... and you could end up like several other non-compliant celiacs I knew... none of the ones who decided to be non-compliant (as opposed to those of us who occasionally get poisoned) lived more than 10 years past diagnosis, and their deaths were ugly (cancer was bad, pernicious anemia and complete malabsorption were even worse).
    • From the Chicago Celiac Disease Center which is one of the premier celiac disease research & treatment centers in the world: Are you scheduled for a biopsy? Are you eating gluten? Any changes in your diet can affect the accuracy of your biopsy results. It is necessary for you to be eating gluten every day for at least 4-8 weeks before the procedure. If you are scheduled for a biopsy and are not eating gluten, talk to your doctor about what is necessary to obtain accurate results. If you have
      a biopsy and have eaten gluten only a short time before the test, you and your physician will not know if a negative test result is accurate or due to your diet. Here's a link: http://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets5_Diagnosis.pdf Also, you might want to read this: http://www.cureceliacdisease.org/faq/can-an-allergist-help-with-celiac-disease-or-does-a-better-specialist-exist/  
    • My panel was the same as yours........all tests positive by large numbers so you can consider yourself a Celiac.  Are you very symptomatic? I will add that I did not eat Whole Foods exclusively when healing.  I needed to gain weight badly so ate gluten-free bread and a few other things that seemed to agree with me.  Never had a problem once I went gluten free, except to discover that I had a problem with dairy also. But I healed well and all is good.  You'll be fine now that you know what the problem is.  Good luck!  
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