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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.

My Bloodwork Is Back, Says I Am Negative. Have Had A Million Test, Can't Figure It Out.
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Okay I will start out by saying I have had ongoing stomach issues for years. I am 34 years old, and since probably all the way back to twelve I can remember stomach issues. I cough after I eat and my stomach will swell way up. Over the past three weeks, I have been VERY sick. I haven't worked in two weeks. It started out with extreme fatigue, total loss of appetite and chest pains. The pains were right in the center of my chest, and I felt like I couldn't get enough air. I have lost about 10-15 lbs in the past 2-3 weeks. I have been in 3 ER's, to several Dr's, including Internal Medicine, ER, Allergist and now GI. I had several chest x-rays, all fine, my oxygen levels, all fine. I got really bad stomach pain in the center up high, kind of under my breastbone, directly in the center. Once in a while it will radiate to the sides. I have also started with the sensation that food is stuck in my throat, I feel the food is actually in my throat and I can't get it all down. The Drs have run every test under the sun. My blood work continues to come back with elevated white cells, for the past 2 years+ this has shown elevation. They have no clue why. I have had dizziness and have actually passed out or went to pass out 3 times in the past 3-4 Months as well. They ran tests for bacteria in my blood that was all okay, they ran tests for parasites, all fine. They want to re-run the test for h-pylori however I have been taking prilosec for a week now, which I am reading on line can/will alter those results. The allergist did skin prick testing on me IGE, and I came up positive to reactions for Soy, Chicken and Corn. I am still waiting for blood work results back for Inflammatory bowl disease, but my upper GI showed nothing. I did get sick several times after having that upper GI and drinking the barium. I had the bad center stomach pains, and radiation of pain. They didn't seem to care or worry about that. Here are my celiac results. PS I did cut out wheat/gluten for about 2 weeks in the last 2 months. I didn't know this could affect the test until after. ughhh. When I mentioned this to the nurse practitioner, she said oh well, you were tested with the IGA before in the past and it was negative then. I also had no reaction to the wheat on the IGE skin prick testing. Just the soy, corn and chicken.

Results

Immunoglobin A - Value 182 Range & Units 68-378 mg/dL

Transglutaminase - Value 5 Range & Units - 0-19 Units

AB, IGA

Gliadin Peptide AB, IGA - Value 9 Range & Units 0-19 Units

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I am little confused about this test. Which one is the total IGA? The Dr. told me he was going to run the IGG tests along with these IGA, to make sure I wasn't IGA deficient. I don't see that he did that?

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I am little confused about this test. Which one is the total IGA? The Dr. told me he was going to run the IGG tests along with these IGA, to make sure I wasn't IGA deficient. I don't see that he did that?

The Immunoglobin A is the total IgA.

Are the test results you posted similar to your previous results?

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That is a good question, I wondered the same thing. It was about a little over a year ago, I couldn't find the results. I thought I posted it on here and looked back at my old posts and couldn't find it. I know it was negative then as well. I see you are off soy and corn as well. I have wondered about nightshades as well. Can I ask what you normally eat, this is going to be a big change for me. The weird thing is the symptoms came on strong about a week after I started eating Gluten again. However, I also went through some MAJOR stress, and that could have brought this all about as well. I am FOR SURE noticing some major stuff going now that I am paying close attention. Tonight I had taco's, like a dummy. I had hard tacos that were corn, my stomach started burning like crazy and I had the feeling of food stuck in my throat. I also made cookies, which had flour. I am not sure how accurate the IGE skin prick tests are. Reading on line it looks like pretty accurate. However my GI Dr. said not that accurate. No idea.

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I eat lots of brassicas, sweet potato, swiss chard, carrots, in fact all root veggies except for beets, all meats, lettuces and herbs, onions, garlic, asparagus, artichokes,avocadoes, all fruits except lemon and lime, all nuts except peanuts, rice, alternative grains except for quinoa, millet and amaranth.

The doctor probably ordered the IgG tests to be run if your total IgA was not within normal range. Since it was, maybe that's why they didn't do them. I think it would be good to get a copy of your old test results and see how much variation there is.

At any rate, even though your results are negative (and presumably your GI checked for celiac on the endoscopy) there is nothing to stop you at this point going totally gluten free to see how you respond. Just because you are not celiac diagnosable does not mean that you are not gluten intolerant. Give it a strict three month trial and see if you don't feel better. :)

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bekkaz,

I too am going through testing but was in a similar place for the last two years. I had no idea what was going on. Just that I was feeling awful and something was terribly wrong. And I too was under serious stress so I know that stress can make a long standing illness go into overdrive. It felt that every part of me was in pain. I went to lots of doctors and then gave up. I couldn't function, I stopped working, I couldn't take care of myself, I was a terrible mess. I would wait all day just counting the minutes until my husband came home. God bless his soul, he didn't pressure me to shape up. No one understood---not my parents, not my husband, and not my in-laws.

I too have always had stomach issues. My stomach would start hurting as soon as I ate since before I started KG so around 3or 4 years old. My parents took me to lots of doctors when I was little and doctors said that I would out grow it. I continued with stomach issues in elementary school, middle school, and high school but I was used to a small stomach ache after meals so I didn't give it a second thought.

A little over a year ago, after lots of visits with my internist, endocronologist, lung specialist, GYN, I decided that doctors will tell me that I'm young and healthy and that all of this is in my head despite the fact that some of values in the blood tests are extremely out of the normal range. So I started to research and learn things on my own. I have learned that all diseases start in the gut. Makes sense right? If you have a diseased gut and cannot digest and/or absorb properly then you'll have lots of unrelated symptoms effecting lot of different systems and therefore no one doctor can make sense and will tell you that you need your head examined. A year ago, I started a grain free, lactose free, and mostly sugar free diet. My health improved a bit and then I started on some supplements, which helped me a bit. But I'm no where near 100% but I can get out of bed and take care of myself.

I am currently going through Celiac Disease testing. I've had 3 different blood tests. The first tested for gluten antibodies, which I told the doc that I wouldn't have because I've been off a gluten free diet for a year. After that, she sent me in for genetic testing. We're still waiting on those results but I decided to make an appointment with an integrative GI and that was a very good appointment. He confirmed that a negative results on a celiac panel blood test doesn't necessarily mean that you don't have the disease. If you haven't gotten the following, this may be something to discuss with your doctor.

1. Breath test for SIBO (Small Intestine Bacterial Overgrowth)

2. Yeast overgrowth

3. Biopsy of your small intestine

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Interesting Meemster. I have had problems with fungal overgrowth. About 2 years ago they a bacterial overgrowth in a stool test, via (Company Name Removed - They Spammed This Forum and are Banned) labs. A functional medicine doctor ordered these tests. I lasted about 3 weeks on a pretty strict diet, and lots of supplements. I kept with ongoing symptoms. Finally I was told, you must have fungus in your environment that you are breathing that is not allowing you to get better. Fast forward, and we found two significant places that had water leaks and created mold. I had the insurane company come, they told me it was NOT toxic mold. So my husband and I ripped all the flooring out, and I cleaned all the black with bleach. HUGE MISTAKE. I have now found out via testing by an environment specialists that it WAS a toxic mold. By ripping it all out we sent millions of spores throughout our entire house. I have had this ALL fixed, and cleaned now. I am hopeful this has helped and will be okay now. I just had everything finished up this past week. Someone told me about something that worked for them for candida. I ordered it and took that about a week ago, it's supposed to help kill off candida as well.

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Hi Bekkaz,

 

The IgE skin prick testing is not going to show an intolerance to foods.  Food intolerances are IgG or IgA type reactions instead of IgE reactions.  That doesn't mean you can't have all those reactions going on at the same time though, just that you can have one and not have another.  So if you have an IgE reaction to a food you shouldn't eat it.  But you could have an IgA or IgG reaction instead and your IgE test might not show anything for that food.  It is possible to have all of those immune reactions together, or any one of them separately for any particular food.

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    • 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!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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