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Recent Diagnosis
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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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