• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   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

2 Yr Old Has Gene But Blood Test Negative
0

Rate this topic

6 posts in this topic

Recommended Posts

Well I am a bit pissed off and upset. I called the Dr today for the genetic test results, and finally got a message back, yes your daughter did come back positive for one of the two genes for celiac, but since her blood antibody test are negative, that means that she doesn't have it, but has a very slight chance that she could develop celiac later in life.

What? The whole reason that she was tested was because she presented as a "textbook case" as the doctor put it, for celiac disease. Unfortunately she was gluten free for 9 months and not on gluten for a significant length of time (a few weeks) before the antibody tests were done (because I thought and the doctor thought that she would get really sick)

Her one test (I think it was the IGA) came back borderline low so that could be why her TTG looked normal. The last time my husband talked to the doctor she said if the genetic test came back positive she would want to do an endoscopy, and now they say she's fine. I am going to get really pushy with the doctor in a minute when I get someone on the phone.

I really want to get a diagnosis for her.

Arrgh!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


A recent study on the celiac.com main page showed that, unless there has been a decent amount of intestinal damage, the blood tests often are not nearly as reliable as theoretical numbers stated in the literature. You might check it out. If she'd been gluten-free for 9 months, much of the damage may have healed, and she didn't have enough additional damage for the blood tests to come back. But really, the fact that she responded to the diet is a test itself.

Share this post


Link to post
Share on other sites
But really, the fact that she responded to the diet is a test itself.

I agree, it is is compelling, but I keep insisting on a diagnosis maybe because I get tired of the perception that this is some kind of food neurosis that I am imposing on her, and I know it doesn't matter what people think, but I really want to be able to explain it with conviction and a diagnosis, maybe that can't happen but I can try.

Well as if I didn't find all of this testing to be discouraging enough! I really feel like I have to be such an advocate for my daughter to get answers because it would be easy for doctors to write it off when she comes back normal on the antibody tests.

Share this post


Link to post
Share on other sites

The antibody test results can end up false-negative if one is gluten-free for a time before taking the tests, this goes for a biopsy as well. One must eat gluten daily until all testing for celiac disaese is completed, normally one should do this for at least 6 weeks beforehand.

Take care,

Scott

Share this post


Link to post
Share on other sites

I have a nine-year-old brother who also has the gene, but is negative to celiac. We did bloodwork with two different labs, with one test with one lab, two with the other or something.....so there was no chance of a lab screw up. Anyway, he, too, will probably develop celiac disease later in life.........I don't think that will be a big deal for him, though, cause he tries my gluten-free food and he likes a lot of it.

Share this post


Link to post
Share on other sites
Ads by Google:


Scott, that goes along with what I was thinking, that it was too soon, I guess I just went along with the doctor hoping we wouldn't have to keep her on gluten for that long. The only part that bothers me is how dismissive the doctor's assistant was, and she was apparently saying what the doctor told her. I am not satisfied that the tests are telling the whole story.

celiac3270, it's good that your brother knows he has the gene. In my daughters case, she was very symptomatic so I don't yet believe the negative test result.

Does anyone have an estimate on how many people carry the genetic marker for celiac disease and the likelyhood of developing Celiac if you have the gene marker?

I have had someone say to me, it's a genetic disease, if you have the gene you shouldn't consume gluten, I'm not sure if I agree with that, but I'm curious how common it is.

Thanks for the replies

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,143
    • Total Posts
      939,895
  • Member Statistics

    • Total Members
      66,132
    • Most Online
      3,093

    Newest Member
    Andre
    Joined
  • Popular Now

  • Topics

  • Posts

    • Its interesting you should say that. I don't normally drink alcohol, I've always felt it tasted like medicine - no idea why! -  but drank some sparkling wine recently out of politeness.  Oh the pain!  At my last appointment my gastroenterologist had asked me if I drank - she never told me why, but if that's what alcohol does to people with gastritis it should be the first thing to avoid I reckon. Also interesting that you had that as an initial diagnosis.  I too had what I am sure was gastritis pain before I was diagnosed.  I was on omeprazole for a month which took the pain away but omeprazole seems to cause D for me. The strange thing was after I stopped the omeprazole the D did not.  That was why I ended up having the scope.  In a way, I wonder if I would have ever been diagnosed had it not been for the gastritis and the omeprozole. 
    • Joseph, for the first 6 months at least, you might want to cook ALL fruits & veggies except maybe bananas & pears. Make it easier on your damaged gut to digest and allow it to heal faster. Also, home made bone broth is amazingly nutritious as well as healing. https://blog.paleohacks.com/bone-broth-recipe/#
    • Can you tell me if my symptoms can be caused by gluten intolerance? burning sensation in mouth (gums, lips) quickly rising blood sugar after eating gluten, then high heart rate I only eat gluten once a day. Later in the day, blood sugar won’t rise as much, but also goes down too much, despite eating a good combination of protein, carbs, veggies. No matter if I eat less or more. burning esophagus burning stomach stool that passes so quickly that I have bad cramps for a while afterwards and feel nauseous often joint pain itching burning skin constipation ringing in my ears nightmares  stiff muscles, especially in my arms anxiety after eatng gluten temper tantrum after eating gluten (crying, anger, anxiety, ocd thoughts) hunger after eating gluten; sometims for hours, even at night I am feeling so desperate. I had blood tests and biopsy and it showed no celiac disease. I do have symptoms of itching, burning mouth, high heart beat, nausea shortly after eating gluten, so I know I am sensitive. I tried to stop gluten and then got such bad hypoglycemia, that I did not know how to continue. So I tapered slowly. But in the meantime, not really getting better. The hypoglycemia is now worse and seems to have to do with my hormonal cycle, which is also messed up. Tryng to stop gluten actually worsened pre-existing mild hypoglycemia. Also when teying to stop, I felt very dizzy, as if my blood sugar was too low all the time (couldn’t measure, no meter back then). I got very anxious, a lot of itching, my menstrual cycle got messed up, pain in my calves and cramps in my feet. When I cut out a small bit, I had it milder. Especially the dizzyness, brain fog and not being able to think clear got better. Can I expect the hypoglycemia to get better?  I am so fed up with feeling sick all the time. But I am afraid too, what will hapoen when I stop, as I know the last time I tried was bad.  Thanks in advance for taking the time to answer my questions. Kirsty
    • You can be safe with just a general multivitamin.  Look for one that is gluten free.  Read our Newie 101 thread located under the “Coping” section of the forum for tips.  Browse through Celiac.com for more ideas.   Food is till the best source for vitamins and minerals, but sometime supplementation is needed.  I do not take any (took iron when I was first diagnosed since my anemia was severe), however, I make sure I eat a varied gluten-free diet and I try to avoid processed junk food.   You might look into avoiding nightshades for a while (white potatoes, tomatoes) to see if that helps with joint pain.  Besides celiac disease being ruled out (please make sure you had more than the TTG IgA and IgA deficiency test because not all celiacs test positive to the TTG like me), did they check for R. Arthritis?   I am sure others will contribute more soon.   Welcome to the forum!  
    • Hey Joseph!   You might re-think that gluten-free oatmeal.   For years,  oatmeal was prohibited.  Researchers eventually determined that some celiacs could have oatmeal as long as it is pure (no possibility of cross contamination from field to factory).  But some 10% of celiacs  still react to oatmeal.  Plus, there is a new controversy over sorted vs. dedicated grown oats.  So, best to avoid oats for the first six months and then experiment.   When my GI tract is inflamed from celiac disease (flare-up) from accidentally being exposed to gluten, I stick to well-cooked foods (even fruit).  It makes it easier to digest.  Once better, I go back to my normal gluten-free diet.  
  • Upcoming Events