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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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Angel M    0

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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MitziG    94

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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GFinDC    609

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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Angel M    0

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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    • I am confused too.  I appears that your blood panel was indeterminate, but that your NP had you on a grain free diet for five weeks prior.  You went back on gluten for two weeks (recommendation is 2 to 4) for the endoscopy.  Maybe it was not enough time for your antibodies to build up and start attacking your small intestine.   Doctors can not say for sure that two weeks is enough.  Probably for most, but maybe not all.  I say this because I never even test positively on the TTG and EMA EVER (but my biopsies proved otherwise and my anemia resolved forever on the gluten free diet).  The number of biopsies taken (6 or more recommended) and the location should be determined.  I would ask for all medical and lab reports.    I think a second GI consult might be prudent.   Your symptoms?  If you have celiac disease it can take a few MONTHS to feel better.  Why?  Most often mistakes are made in the diet.  It happens.  There is a steep learning curve.  It flat out just takes time to heal.  I think most members will tell you that healing does not happen that fast even though science tells us that villi regenerates in just a few days.   There is usually a lot of collateral damage. Finally, something is wrong.  Maybe it is NOT celiac disease.  I though for sure my niece had it, but Crohn's was found instead on a pill camera.  She had consulted with four GIs!!!!  Maybe it is NCGI which is determined after celiac disease has been ruled out.  Then a gluten-free diet is in order to resolve the NCGI (Non celiac gluten intolerance or whatever they are calling it now.   So, keep advocating for your health.
    • I looked at your past posts, but I’m not sure i know what you were eating then and what you’ve stopped eating now. Also what sort of medical workups you’ve had and what were the results. I understand your biopsy was negative - but I also saw on one post that you were worried they only took one biopsy. Do you have the analyst’s result report there with you? Does it say how many were taken? It’s hard for me to hazard any kind of a guess without a little bit more information, including any medications you are taking. I’m sorry you are feeling so awful. What symptoms are you having? Plumbago
    • I've posted a few different topics, so I thought I would just update in one post. I am seeing my GP later today, but apparently my biopsy results were negative. I have no further information on this. What I do know, is that I have been feeling much worse since giving up gluten after my gluten challenge. Half the days I have barely left the couch. I am so confused and upset. They had warned me this may not give me answers...I'm barely eating anything, I feel so sick. I feel like I felt better eating bread, so maybe that's how I'm supposed to be eating? At this point I just need to eat more than a banana, which is all I can stomach today.
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