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Test Result Question

2 posts in this topic

Hi. My children were recently tested for celiac disease. My 8 year old daughter is an uncontrolled type one diabetic. My 12 year old son shows many classis symptoms of the diesase. When we got the blood test results I was told that my daughter had a positive antiglandin Abs, IgG and my son had a moderate to high positive or the antibody. Both children had negative IgA and tTG tests though. Our doctor said she will wait another 6 months and test again. At that point if they still show positive testing she will refer them to a specialist. My question is whether it is safe to wait and what the 6 month wait would be for. She does not want us to change their diets at all in that time frame. Are there other conditions that could make the IgG positive, but the other antibody tests negative? My doctor seemedvery unsure about all of this. If you have any thoughts on this, Thanks for your input!!!!


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The same thing happened to all three of my children in regards to the testing. They all tested positive on the IgG gliadin antibody tests and not the other tests that are more specific to Celiac. Fortunately they were being seen by a Physicians Assistant who didn't know much about the testing, so when he called to give me the test results he asked if I wanted referrals and I said YES! So now they are all being seen by a wonderful Pediatric GI who insisted on repeating the tests with Prometheus labs and running the gene test. And Prometheus routinely checks for IgA deficiency with their Celiac Panel, since the frequency of IgA deficiency is higher in Celiacs.

The reason your doctor is wanting to wait is to see if they will start producing IgA mediated antibodies in the next six months. This is not necessary and certainly unreasonable, since some people never produce antibodies in the blood high enough to register as Celiac. I am one of those people. I had myself tested through Enterolab , and that showed that I had the main gene responsible for celiac disease, and that I was producing positive levels of antibodies in my intestines, but they had not yet moved out into my blood stream. I also had minimal damage in my intestine, despite the fact that I have been sick since I was 4 years old. (I'm now 31) So I don't see how it would hurt for your doctor to send your kids to a specialist. Are you a Celiac? Does it run in the family? If there is a family history, then they should at least have gene testing. It is recommended that if you test positive on the gene, that you maintain a gluten free diet, so you don't aquire celiac disease in the future.

I wish you luck, and God bless,

Mariann :)


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    • I have seen articles linking celiac to Barretts and esophagitis.  I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's  and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms. Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten. 
    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
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