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Recent Diagnosis

Angel M

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Angel M Rookie
Angel M
Posted

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 Enthusiast
MitziG
Posted

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.

GFinDC Veteran
GFinDC
Posted

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

https://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

Angel M Rookie
Angel M
Posted
  • Author

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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