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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,019
    • Most Online (within 30 mins)
      7,748
    Nancy Adams
    Newest Member
    Nancy Adams
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.