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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.

Recent Diagnosis
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4 posts in this topic

I was diagnosed with Celiac in March/April of this year, but I have some questions regarding my testing process. I was first tested for Celiac Nov. 2008. My mother went to the doctor for various symptoms and read about Celiac on the internet, so she asked to be tested. She had one positive and one negative blood test. She told me to get tested, and I had two positive blood tests. My results are below:

Endomy IGA Positive

Endomy A TItter 1:160

TTG IGG <3; <7 is Negative

TTG IGA 44; >8 is Positive

Gliadin IGG 72; >17 is Positive

Gliadin IGA >100; >17 is Positive

I didn't know much about Celiac at the time, and I was losing military insurance in a month because of my age. I was not diagnosed, so I decided not to go for further testing because I learned that I would not be able to get individual insurance with a diagnosis. I tried a gluten free diet for a little while and didn't notice anything different. I eventually started eating normal again. Fast forward about 3 years. Between Nov. 2011 and Jan 2012, my husband was deployed, and I had some pretty severe anxiety and a few health issue-infections and oral thrush from medication that was difficult to get rid of. I finally started to get over most of the anxiety and was feeling better towards the beginning of January, so I made the decision to try gluten free. I always had concerns about those positive blood tests. When my husband came home, I decided to see a GI specialist. I was gluten free about 2 1/2 to 3 months at the time of my testing. I showed the doctor my previous results, and he told me I have Celiac. He wanted to do the EGD, and I requested another blood test. However, he told me not to eat gluten before having any of the testing done. Below are my recent results:

TTG Antibody, IGA <3 Negative

Immunogobulin A Within Range

Gliadin (Deamidated) AB (IGA) 25 >20 Antibody Detected

So, these were the results after about 2 1/2 months gluten free. After I had the EGD, I met with the doctor, and he told me my villi were not damaged, but there was inflammation in my intestines that he contributed to Celiac. He also mentioned something about gas. I wanted the records but I just got them today. Here is what it says.

A. Duodenum, Biopsy

-small bowel mucosa with mild scattered chronic inflammation

-the villous architecture is normal

-there is no increase of intraepithelial lymphocytes

-no evidence of gluten sensitive enteropathy (Celiac Disease)

-no evidence of aypia or malignancy

B. Stomach, Antrum, Biopsy

-mild chronic gastritis

-Helicobacter Immunostain-no helicobacter organisms identified

His impressions were Celiac disease and Gastritis. He recommended Proton pump inhibitor, follow up office visit, and Gluten free diet. When I went into his office, he didn't even remember that I was there for the results of my EGD. I had to remind him, and he only told me that I have Celiac and the gluten free diet is working. He never mentioned anything about Gastritis. So, I'm not sure what to do about that.

So, I guess I'm just curious if anyone has had a similar experience or if you can help me understand the testing a little bit. Also, I notice the numbers are drastically different from my first test back in 08 to my recent test in 2012. Could I have healed that quickly with only 2 1/2 months of gluten free?

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You definitely have celiac. Your first set of tests had FOUR positive tests, not two, and they are highly specific for celiac. There is no question. And yes, villi heal very quickly on a gluten-free diet, and antibody levels can drop within weeks, so the fact that your new tests reflected ANY celiac damage is indicative of the severity of damage you must have had. You have a dx. You need to immediately begin a lifelong gluten-free diet. No question about it. You will likely not need and PPI's after a short time being gluten-free. Generally gastritis goes away. Please educate yourself about celiac though. Much more is involved than just easing "stomach trouble" your entire health, and even your life, depends on staying 100% gluten free.

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Hi,

Welcome to the site! :) You were smart to go get tested again. Celiac doesn't go away, it is a lifelong thing once it starts. The immune system learns to kill gluten just like it kills germs, and the gut takes the damage along with the gluten since that's where the battle is fought. Antibodies are normally much higher in the gut, where they are "needed" to fight the gluten. Many of them are actually made in the gut lining where they are important as a first line of defense against nasty little germs that want to hurt you. So finding them in the bloodstream means they are roaming from home looking for other targets. That could be your liver, you skin, you brain, your joints, or other important stuff that you don't want hurt. Google gluten ataxia to get and idea or dermatitis herpetiformis. I don't have any refs for this thinking so lets just say it is IMHO. Although you could read up on Enterolabs testing of you are curious.

Well, that all sounded kind of ominous but it doesn't have to be. You can avoid many health issues by sticking to a clean, healthy, gluten free diet. The usual suggestion is to eat gltuen for 3 months before doing testing for blood antibodies. Your showed an increase sooner than that which means something is definitely going on. Your immune system is a good soldier and responds quickly and will be ready to fight the battle for a couple weeks at least.

Well, enough rambling, here are some helpful threads.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

How bad is cheating?

Short temper thread

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Thank you so much for all the information. I do feel like I am relatively knowledgable about Celiac and how it affects your overall health. However, there is always more to learn. I have been gluten free for about 7 months. I didn't feel like my testing was done properly. My doctor told me many times that I know more about it than he does. Even though I didn't really have doubts that I have Celiac, I wanted to see what others who are knowledgeable said. If you get a change to look at my post "symptoms (or lack there of)," please let me know what you think. I asked about the fact that I am not aware of any of my symptoms (not saying I don't have any), and how that can be a challenge in maintaining a gluten free diet. Thanks again for your responses!

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    • In Dire Need Of Help
      Having anxiety is a major symptom of celiac disease per many of our members on this forum (including me).  These are the tests needed for diagnosing celiac disease but the catch is that you need to be consuming gluten in order for them to be valid.   http://www.cureceliacdisease.org/screening/ Your GP or PCD doctor can order the panel.  Try to go for the complete panel.  Often just the TTG tests are given in order to save costs.  It's good, but does not catch all celiacs. I hope you get relief!  
    • In Dire Need Of Help
      You need to have your adrenal glands checked. I was diagnosed with celiac after my adrenal glands started to shut down. Since then I have met at least 3 others that had the same thing happen. It was missed 3 times in the hospital, for some reason the adrenals often get missed.  It sounds like the latter stages of hypo adrenalism, not adrenal fatigue. Research it to see if that seems like what you are going through and make sure you find a dr that knows how to diagnose and treat it
    • In Dire Need Of Help
      Hi my name is Alex and I am 23 years old. I am suffering so badly right now in life. Everyday I have multiple, very severe panic attacks. I have called 911 many times in the last 6 months. I am suffering with vertigo, intense weakness and pains, I can not digest anything, I have terrible acid reflux, I can't sleep, I can't relax, my heart constantly palpitates, my breathing is "forced labor" all day. I am suffering in a mental fog. I have been from doctor to hospital to doctor and every EKG comes back normal, every doctor says the same thing, I am struggling with anxiety and they write me whatever prescription of the week they are offering  I recently took it upon myself to cut gluten out of my diet, and wallah! I felt like I did in high school within 2 days. I work in NYC and many times it is nearly impossible to find something containing no gluten, and many times when I ask they tell me "No Gluten" and I eat whatever food I ordered (probably salad w/ dressing) and i find myself driving home in a terrible panic attack. Panic is my main symptom. I have not been diagnosed yet, but the difference from how I feel and how to the people around me tell me I act I am 100% convinced. The question I'm having is, what do you think? Is it possible I have Celiac? Can panic be the main symptom? I'm telling you right now, my anxiety is unlike anything anyone has ever seen. I lay on the ground for 2 hours with numb limbs feeling like I am having a stroke unable to talk to anyone. I have 2 of these a day. Please let me know your thoughts. I truly am a novice with all of this. I am suffering and I need help. Thanks
    • celiac disease is psychosomatic
      The following link might be helpful for others experiencing simlar psychosomatic issues with doctors. Although it's only for psychiatrists, I think it should be for all doctors! http://www.psychsearch.net/complaints/ The neuropsychiatrist I saw might fall into this category? I can checkmark:

       Falsified medical records
       No Biological Test for "Mental Illness" (no blood, urine or other lab testing)
       Breach of Confidentiality (...if she sends my medical records to my doctor or discusses them with him. I am requesting a copy of my records from this doctor t see if she sent anything to him.)
       Physical Illness Misdiagnosed as "Mental Illness"
       I was told I have a "chemical imbalance" (without any lab tests)
       Unethical Conduct
       Unprofessional conduct
       Something else that didn't seem quite right  
    • Allergy or Preference? Waiter asks
      At my local Five Guys, I told the counter guy that I had to avoid gluten for medical reasons. I was ordering a burger with no bun and some fries. He yelled back "Allergy Alert!" and every line cook immediately changed gloves and cleaned their work space. Will I go back? You bet I will!
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