• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • 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?  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
0
carecare

If + Blood Test Why Biopsy? Son Was +

Rate this topic

Recommended Posts

I found out already today that his celiac blood test was positive. Well, the nurse called and said "weak positive". I'm going to pick up a copy of the results tomorrow and see what you guys think. His ped wants to refer us to a ped. GI doctor. Since a positive is a positive...I shouldn't have to think it's not right? Also, I know the next step would be a biopsy...but why do they biopsy if you actually get a positive blood test. Really, why wouldn't they just say you are celiac with just the a positive blood test??

Before we got the results my son said to me today "mom, I guess I'm kind of glad that I got the blood test done because if it is positive then I'll be able to make changes and I'll be able to feel good again." So, why should I wait and make him suffer any longer....because who knows when I'd get in to see a GI doctor and then to schedule a biopsy....the whole while making my son eat something that's making him feel bad.

Share this post


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


I chose not to have the biopsy for my LO who was 7 at the time. A positive is a positive. After 6 months off it the reaction to cross contamination affect on her was unbelieveable! I'm happy with my choice but it's up to you really.

  • Upvote 2

Share this post


Link to post
Share on other sites

My now 6 1/2 year old had a weak positive on his ttg last November. I opted out of doing the biopsy on him at that time. My husband regretted that decision but I wasn't willing to put him back on it for three months to "maybe" get a positive biopsy. He was gluten free for 4 1/2 months when we decided to do a gluten challenge. Lets just say that it didn't go well and my husband is now 100% convinced that the blood test was accurate, that gluten is a problem for him and he has celiac.

My 10 1/2 year old son is a different story. He has repeated blood tests that are negative. I have struggled with trialing him gluten free for about a year now. We changed allergists last July and after him and younger brother was retested for celiac (when his brother showed positive), he is pretty certain that the oldest son is either a sero negative celiac or has non celiac gluten intolerence. He wants him gluten free because of some of his history, his brother being positive on blood work and me being diagnosed via blood and biopsy. After some soul searching and talking with my husband we decided to consult with a pediatric GI. We went last month and discussed his medical history, current symptoms, brother and mine diagnosis and his allergist's recommendation. He goes August 17th for a scope and biopsy. His daddy wanted to exhaust all testing before I put him gluten free. I'm not waiting on the results to put him gluten free. He will at a minimum do a three month trial or if positive results be gluten free for good.

Even though I made different choices with both my boys, I feel for each of them the decision was the right one.

Share this post


Link to post
Share on other sites

I was told it's like a pregnancy test in that if you test positive it's extremely unlikely that it's a false positive but if you test negative you can still be positive so further testing may be required.

Share this post


Link to post
Share on other sites

From what I understand (I am new to this, so it's not much :unsure:) if you are "just" gluten intolerant vs. full blown Celiac disease, you don't have an increased risk of developing cancers and all of the serious intestinal damage that comes with Celiac disease. So, for me, having the DX of either gluten-intolerant with or without Celiac is important info to have. In other words, I need to know if it's true Celiac disease so that I can be monitored for things that Celiacs are more prone to get like cancers and diabetes. Also, if I can tell my family "I have been tested by a doctor and without a doubt I have Celiac disease, you might have it too", they will be more likely to get tested and get treated.

Regardless of my biopsy results next month, I am still going gluten free for the rest of my life because of my positive blood tests. I am tired of feeling like crap!! I will have my 6 year old tested (blood work, including genetics), and cross the "to biopsy or not" bridge if we get to it. It's a hard choice to make when you are talking about little ones! :(

Share this post


Link to post
Share on other sites
Ads by Google:


But being gluten intolerant wouldn't give you a positive blood test...only Celiac would. If that deamidated gliadin test is 98% specific...which I gather means 98% of individuals testing positive on that test are celiac. That plus having symptoms that go away when implementing a gluten free diet is enough for me to believe and actually feel confident telling people he has celiac disease. Also, with the possibility of false negatives on the biopsy end...I'm just content with just the blood test at this point. It's day 3 of gluten free and the sores in his mouth are almost completely gone and don't hurt. I'm hoping the muscles pain will be next! I can't see waiting 2 months for a biopsy and continue to put him through pain and being uncomfortable for the next couple months....when the cure is so easy and can start today. ;)

Good luck with your testing! :)

Share this post


Link to post
Share on other sites

Pain in gut, I am also positive on my deaminated anti-gliadin at 45(0-10). My last biopsy two years ago was negative, so was told I'm not celiac. I am having a repeat biopsy soon with another doctor, and then am going gluten-free. May I ask what your level was on your test? Have you had symptoms your whole life? I am 50, but my stomach symptoms of horrendous bloating began 11 years ago.

Share this post


Link to post
Share on other sites

Pain in gut, I am also positive on my deaminated anti-gliadin at 45(0-10). My last biopsy two years ago was negative, so was told I'm not celiac. I am having a repeat biopsy soon with another doctor, and then am going gluten-free. May I ask what your level was on your test? Have you had symptoms your whole life? I am 50, but my stomach symptoms of horrendous bloating began 11 years ago.

My DGP was 59 (0-10) :( . Yes I have had symptoms for the last 4 years, which began with a bowel resection for endometriosis (I think this was the trigger for me). I recently put together a timeline of events (I am geek like that) for my GI doc. Here is how it all began for me:

2007

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
      108,963
    • Total Posts
      943,692
  • Member Statistics

    • Total Members
      67,275
    • Most Online
      3,093

    Newest Member
    Beth N
    Joined
  • Popular Now

  • Topics

  • Posts

    • Celiac Disease is damage to the nooks and crannies in our intestines leading to malnutrition, vitamin deficiencies with all the various symptoms that make it so hard to diagnose. Then you add years of the antacids, antibiotics, Tylenol, opioids, alcohol, etc., each with their own particular side effects and damage. Now you've got a toxic environment that kills off the beneficial bacteria increasing malnutrition. Theoretically you can eat anything except gluten. But wheat is so ubiquitous in our diet and economy there are unlimited opportunities for cross contamination. So read the label. Use common sense. If there isn't a label it doesn't have wheat so you can eat. Big Food likes to add wheat to everything because it is addictive and helps them ensure you can't eat just one. Why on earth else would Campbells Tomato Soup have wheat listed as an ingredient? Meantime your body is in distress from malnutrition so you need to be sure to replenish D3, and Iodine for starters and treat and support any other symptoms while you heal. Good nutrition without wheat is the only way to stop progression. And just like chewing paint chips made with lead is bad, so is food with wheat.   well said, doesn't need a label.
    • We use pure cherry juice with our snow cone machine. Makes for a nice dessert after dinner.
    • Hi Kurasz, How's it going?  Any change for the amazingly better?  Or slightly better?  
      If not, hang in there, and keep praying! :)
    • Garden of Life brand Dr. Formulated Organic Fiber. It's certified gluten free. Also free of psyllium husk, dairy and soy. Also found that just simply increasing fiber intake works wonders. Perhaps try skipping a protein for at least one meal and fill up on veggies and fruits.
    • When you're looking for answers the negative endoscopy may seem like bad news in a funny way, it did for me when the doctor told me, but really as CL said it's good.  Keep working with your doctors.  From what you've said before gluten could still be the problem.  Now you've eliminated celiac you can try removing it from your diet, but it's important that you do it safely. You don't want to cause a problem while trying to fix one. Most people get a lot of B vitamins in particular from gluten foods. So if you make a change to your diet do it with your mom, ideally involve your doctor or a dietician and keep a diary of your symptoms too, sometimes called a food journal. You may still have found your answer, don't panic and don't lose heart. Best of luck Matt 
  • Upcoming Events