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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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    • The full celiac panel includes: TTG IGA TTG IGG DGP IGA DGP IGG EMA IGA   You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp. Personally I'd make an appointment at the gastro so they can order their other blood tests and just insist on the full celiac panel also. There's any number of things it could be, not just celiac. If you don't get diagnosed you probably won't stick with a 100 percent gluten free diet for the many months required to see if it works. Good luck in your search.
    • You could certainly try.  Just remember that, if the mix doesn't have xanthum gum, you may need a little.  
    • Maybe the 20 mg. was too strong for you and increasing symptoms?   I have a very low threshold for most meds, and do better on child sized doses.   If you tolerate the 10 mg., that may be the way to go just to get symptoms under control and get stabilized.  Or maybe 10 mg. every other day, if that works. I read that food intolerance symptoms can take 24 to 48 hours to show up.   Can you think of what you were eating in the week before all this started?   I have always used dairy to settle my stomach, so until I figured out the dairy intolerance I was using a small glass of warm milk whenever my stomach was upset.   It provided immediate relief, but caught up with me hours later.   It was kind of hard to believe that milk was the cause when it was so effective in immediate symptom management.    I had also increased chocolate, coffee, and peanut butter right around the same time.  They don't seem to be intolerances (or maybe they are in huge quantities!), but they were irritants, so I needed to avoid them to get things to settle down.  Now that I'm approaching the 3 month point and starting to do better, I have been able to drink coffee with soy milk to buffer, have a little chocolate, and sample some peanuts without much distress.  Perhaps the hardest part of all of this is the time it takes (why forever?!), and how limited one's diet must be for so long in order to stabilize.  I was so sick of eating the same thing for so many weeks, that I started dreading the next meal.  I agree that symptoms and recovery become a blur.  I started making notes on a calendar so I could be more objective and accurate in looking back to assess my symptoms, what I'd tried, and progress.  Otherwise, I just couldn't tell what really did and didn't work.   What seemed like a week ago was really 2 or 3 ... I know you know what I mean! Do follow up with your doctor as need be.  I find that GI docs aren't that helpful for this sort of thing as it's minor in the general scheme of GI things.  My PCP basically told me it was trial and error, as it's different for each one of us.  He could only guide me in meds.   
    • I am sorry that you are all having to go through this. I know all too well the neuro issues she is going through. The world seems so hopeless under that gluten cloud. But it does lift.  There isn't much a neurologist is going to be able to do except to encourage her to be as strict as possible.  It would be a good idea to have your GP or GI do a vitamin and mineral panel if that hasn't already been done. We do sometimes need supplementation while healing as some nutrients do have an impact on the nervous system function. What I find helps me the most is knowing that it is the gluten and it will pass. It is a horrible feeling when it is happening and is hard on ones loved ones.  All you really can do to help her is to remind her that it is the gluten that is making her feel so bad. Try to provide distractions and understanding. If you haven't already do read the Newbie 101 thread at the top of the Coping section it has a lot of good info for you.  These episodes will come less often as accidental glutenings become less frequent. Ask any questions you need and feel free to vent on the tough days.
    • Reviving this thread as I am in search of better care for my child, diagnosed this spring with off the charts antibodies. She experiences significant mood effects from gluten and all I get from her GI and ped are blank looks - they aren't familiar with the idea that it can affect one's mental or emotional equilibrium or brain. (I would bet that if we scanned her brain, there would definitely be some evidence of damage.)  Obvs we have her 100% gluten-free and are very cautious, but given that even the slightest glutening sends her into despair and suicidal ideation, I am looking for a doctor that *does* understand the connection and can give us better guidance so I can feel more confident that she'll stay safe until her gut heals. Any recommendations (in SF bay area, or anywhere really) would be welcomed! 
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