Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

If + Blood Test Why Biopsy? Son Was +

carecare

Recommended Posts

carecare Enthusiast
carecare
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


come dance with me Enthusiast
come dance with me
Posted

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.

Roda Rising Star
Roda
Posted

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.

come dance with me Enthusiast
come dance with me
Posted

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.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

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! :(

carecare Enthusiast
carecare
Posted
  • Author

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! :)

sue1234 Rookie
sue1234
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pain*in*my*gut Apprentice
pain*in*my*gut
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,903
    • Most Online (within 30 mins)
      7,748
    LamFam
    Newest Member
    LamFam
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.