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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

First Steps
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11 posts in this topic

Here's a question for all you veterans-- I was recently diagnosed with Celiac. Have you found that you are pretty much on your own or do you suggest finding a GI doc or a nutritionist to work with long term? My impression of my GI doc is that he doesn't have too much to offer me. Besides the obvious change in diet, do you go back to have your blood tested periodically, to check on your progress of healing? Any other suggestions for a new lifestyle plan?

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Unfortunately I do not think most GI docs are aware of what foods, meds, etc are gluten-free and whats not. I think you can handle it on your own especially with sites like this and all the resources we have available to us.

Hang in there! :D

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I don't trust many doctors and GI doctors even ones that know about celiac can't really tell you all the stuff that contains gluten. This is something you pretty much have to learn. A celiac nutritionist may be able to help out with what you can eat but you could learn so much more on your own. You will learn what the good brands of foods and products to use are. Sites like this one really help and you can learn alot. If you need help with anything just ask we are always here to try to help :D

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This website is the best place to go! Since I realized I had this, I come here when I have questions. It's free and honestly,most people here know more than the doctors when it comes to eating gluten-free...for sure! And, you don't even have to leave your house:)

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I found that I learned almost everything on my own or from the people on this site.

I went out and bought gluten-free cookbooks and used the google search engine like crazy.

Then I found this web site and I find out most of my info from here.

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Its my opinion that very few in the medical profession have much to offer for us Celiac people, even if you get diagnosed by them they are clueless about where gluten is found.

I have learned more on the internet then my doctor knows, that's for sure.... I love the various lists like this one, people are so helpful and there are a bunch of good websites too.

Susan

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;) i agree with everyone---this is our lifestyle and up to us to figure it out--there are many out there that can answer questions and i will always answer any question i am capable of answering and if its bigger then me, then i call my sister who is a celiac and dietician--she usually can answer the hard questions for me :D --i find that sometimes i become to trusting of products and other times that i just get lazy and i usually pay for that mistake--my man just told me that i cant afford to get comfy or lazy and he's right B) it's just sometimes i want to be normal :( and we arent--we look normal, we behave normally, well most of us do--some of us are just plain crazy and thats a good thing--if we cant laugh at our mistakes, then we are in trouble-----it's like i say--the glass is half full, that's the way we all should look at life :lol: finding out we are celiac is much better then being sick all the time--it's not easy, but we can all do it--pat yourselves on the shoulders for the good job you do on a daily basis :D ---deb
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Thanks for the encouragement ladies! It is my impression that you are on your own with this diagnosis. But who better to be the experts than us I guess! ;) I look forward to talking with you more in the future...

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I suggest a palm pilot. Keep a list of gluten free medications with you at all times. (this may be so important to me because of my kids) I've pulled out the palm pilot at the urgent care for prescriptions for kid's ear infections at 2:00 a.m. The doctor asked me where to find the list.

I also have the forbidden ingredients list on the palm pilot. I really don't look at it anymore.

If an emergency happened and someone else had to make gluten free food/medication choices for you or your child, do you have the information on hand for them?

Laura

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Laura -

Do you like the Palm software from the Clan Thompson site? I had downloaded the demo to check it out...

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All of the doctors I went to were clueless about celiac disease. They knew a lot about writing prescriptions though. The good thing about this disease is it forces you to pay attention to what you are shoveling into your mouth. You will be much healthier as a result.

Ianm

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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