• 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
0
kb27

What's The Likelihood For False Positives From Blood Test?

Rate this topic

Recommended Posts

My 8-yr-old was recently diagnosed with "probable celiac" from a blood test. He's scheduled for a biopsy in February.

My question is, how likely is it that his positive blood test was false? Or is he pretty much positive for celiac and the biopsy is just to confirm?

Here are the tests they ran as best I can tell:

The ones they highlighted for me were:

Celiac gene pairs present? Yes

Tissue Transglut Ab IgA >100.0 (H) (<4 negative, >10 positive)

The other ones under the celiac comprehensive cascade were

Immunoglobulin A (IgA): 83 RAnge: 34-274 mg/dL

DQ Alpha 1 0.5:01,05

DQ beta 1 02:01,02:01

and the interpretation says "Celiac disease probable. Consider biopsy."

During the same exam, he also tested positive for H. Pylori and is on antibiotics for that. We scheduled a GI appt was to look in his stomach and see if there was any damage from that. That's being expanded to include the celiac biopsy.

I have 6 weeks to stew on this, and I've been preparing mentally for a switch to gluten-free for him. I just wonder how likely it is that he has it. He's not really sick. His main symptom that prompted the screening is anemia that won't go away with iron supplements. He's also a little short, and a little irritable (but I was blaming his age for both of those).

Thanks!

Share this post


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


My 8-yr-old was recently diagnosed with "probable celiac" from a blood test. He's scheduled for a biopsy in February.

My question is, how likely is it that his positive blood test was false? Or is he pretty much positive for celiac and the biopsy is just to confirm?

Here are the tests they ran as best I can tell:

The ones they highlighted for me were:

Celiac gene pairs present? Yes

Tissue Transglut Ab IgA >100.0 (H) (<4 negative, >10 positive)

The other ones under the celiac comprehensive cascade were

Immunoglobulin A (IgA): 83 RAnge: 34-274 mg/dL

DQ Alpha 1 0.5:01,05

DQ beta 1 02:01,02:01

and the interpretation says "Celiac disease probable. Consider biopsy."

During the same exam, he also tested positive for H. Pylori and is on antibiotics for that. We scheduled a GI appt was to look in his stomach and see if there was any damage from that. That's being expanded to include the celiac biopsy.

I have 6 weeks to stew on this, and I've been preparing mentally for a switch to gluten-free for him. I just wonder how likely it is that he has it. He's not really sick. His main symptom that prompted the screening is anemia that won't go away with iron supplements. He's also a little short, and a little irritable (but I was blaming his age for both of those).

Thanks!

Welcome to the forum!

False positives on the celiac panel would be exceedingly rare, if at all. I'd say he has it based on his blood work alone. Even if the biopsy would come in negative, damage is many times patchy and can be missed. I can't help you decipher the gene tests (have no clue what my genes are) and they are not diagnostic.

Whatever you do, don't have him go on the gluten-free diet until after the endoscopy/biopsy.

My adult daughter, also celiac and gluten-free since Aug. 2010, has been anemic for years in spite of being on iron supplements. She'll be having some follow-up testing soon, so hopefully she'll see improvement in those readings.

  • Upvote 1

Share this post


Link to post
Share on other sites

I agree with the above poster! It is pretty rare to have false positive blood. I have never heard of anyone who did. There are also MANY symptoms associated with celiac including the ones you mentioned you see in your son. Not everyone has the "classic" symptoms or what people think are the classic symptoms.

  • Upvote 1

Share this post


Link to post
Share on other sites

TTG is an autoimmune antibody that is usually caused by celiac, but it's not 100% specific by itself. With both DQ2.5 and positive TTG he definitely needs to be off gluten.

Even if the biopsy is negative damage can be patchy or partial and the biopsy can miss it. Celiac disease can also develop gradually in some people, where the biopsy isn't positive for a number of years after the TTG. You don't want to let your son get that ill if possible. After he is gluten-free for six months, request a follow-up TTG. If the TTG antibodies are caused by celiac and not another autoimmune condition, they will be falling if not gone.

  • Upvote 1

Share this post


Link to post
Share on other sites

"His main symptom that prompted the screening is anemia that won't go away with iron supplements."

This is a HUGE celiac symptom.

As others have said, false positives are rare. And do NOT have him go gluten-free before the biopsy.

richard

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


Thanks everyone. I thought there weren't many false positives, but I wasn't sure I was reading everything correctly.

He's staying on gluten until the biopsy and then we are going gluten-free. It would be nice to have a positive biopsy because that can help us get an official doctor's note with diagnosis for school/camp/etc. Even if it's indeterminate, I think we will go gluten-free and see if that helps with the anemia.

Share this post


Link to post
Share on other sites

Just figured I'd follow up. He had a biopsy last week and it was positive. We cleaned all the gluten out of the house and went gluten-free a week ago. So far, so good. Thanks for the help. Knowing that the blood tests were pretty accurate for positives gave us 6 weeks to prep our son and get ready for the big gluten-free shift. It went pretty smoothly.

Share this post


Link to post
Share on other sites


Ads by Google:


I am where you were a few weeks ago. A few days ago we got the blood work back on my 8 year old son and he tested quite high for both tTG and gliadin IGA. His symptoms have been loose stools (for the past 5 years!) and recurrent stomach pains that are very sporadic. His ped never tested him because he's always been in the 60-70% for his height and 50% for weight. Since his growth was fine she assumed he couldn't have any intolerances and his loose stools were explained away first by "toddlers diarrhea" then as just being "normal" for him.

We have an appointment on the 28th with the gastro and I'm assuming he will want to schedule a biopsy. He's still on gluten right now awaiting our appointment, his stomach has been fine recently so this diagnosis seems so surreal. I'm sure once we have the biopsy and start the gluten-free diet it will really hit home. Now I feel so overloaded by information that I almost feel paralyzed.

Do you have other children? Have you gotten them tested, if you do? I have 2 other kids so one of my goals for tomorrow is to make an appt. for them to have blood tests done as well. I'm sure I'll get used to it and it will become our new normal but right now it feels like nothing will ever be the same.

Melissa

Share this post


Link to post
Share on other sites

I am where you were a few weeks ago. A few days ago we got the blood work back on my 8 year old son and he tested quite high for both tTG and gliadin IGA. His symptoms have been loose stools (for the past 5 years!) and recurrent stomach pains that are very sporadic. His ped never tested him because he's always been in the 60-70% for his height and 50% for weight. Since his growth was fine she assumed he couldn't have any intolerances and his loose stools were explained away first by "toddlers diarrhea" then as just being "normal" for him.

We have an appointment on the 28th with the gastro and I'm assuming he will want to schedule a biopsy. He's still on gluten right now awaiting our appointment, his stomach has been fine recently so this diagnosis seems so surreal. I'm sure once we have the biopsy and start the gluten-free diet it will really hit home. Now I feel so overloaded by information that I almost feel paralyzed.

Do you have other children? Have you gotten them tested, if you do? I have 2 other kids so one of my goals for tomorrow is to make an appt. for them to have blood tests done as well. I'm sure I'll get used to it and it will become our new normal but right now it feels like nothing will ever be the same.

Melissa

We have one other son. We had him tested, and both my husband and I got tested. None of us had high tTG readings at all. I had the gene test run, and it was positive, so we know it came from my side of the family. A few of my relatives are getting tested, too - the ones with symptoms compatible with celiac.

Good luck with everything, Melissa! We had never even heard of celiac when we got the test results back - our son's problem was anemia, not any GI issues, so he was seeing a hematologist. I will say that for us the transition has been fairly smooth. I think my younger son is having the most trouble, because he doesn't understand why we don't have bagels and English muffins around the house any more. My celiac son is doing ok with it all.

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
      108,398
    • Total Posts
      941,071
  • Member Statistics

    • Total Members
      66,421
    • Most Online
      3,093

    Newest Member
    jjamstoU2
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi guys. It's me Jenny 😊I feel like I post every other day with problems or questions. Well I'm here again. I have this problem with my left leg (in particular) at night going numb it wakes me up in the middle of me sleeping and is difficult to fall back to sleep. It's not my bed mattress, it's not the location on how I sleep. I don't know what it is. It only happens at night. The neurologist said I was sleeping on my spine wrong because I sometimes end up on my back wrong! Happens just as much on my side. Don't know if this is celiacs related damage or something else my quality of sleep sucks! Any one experience this? Also I have a mysterious pain that started in my neck atleast 2 years ago got use to it but over the summer I noticed there was pain (unbearable) on the shoulder generating down to the wrist on one side. Any one know what this could be. My doctor diagnosed arthrits but I'm only 30
    • I have been gluten free for about 7 months. I had a check with my gastroenterologist at 4 months post endoscopy, and asked him to check my thyroid, iron, vit D and Vitamin B12 levels. They told me all were fine (which I found surprising, but I take vitamins). Shortly after that, my hair started to fall out like crazy. At first I thought it might be due to an accidental glutening in mid Sept, but it is still falling out. I finally did a hair count after yesterdays shower - 919 strands!  Thank goodness I (had) thick hair, but its getting noticeable. Coincidentally, yesterday I noticed bruising on my arms & don't remember hitting anything, but I remember getting bumped by someone. Could my iron change that fast? I'm looking for answers. Yes I use gluten free shampoo & product, but I dont know if my hairdressers shampoo is gluten-free. I only go there once a month though. Any ideas would be much appreciated! 
    • Just wanted to revive this thread with an update. My daughter's appetite/calorie intake is slightly better these days, especially in the morning--though overall I'd say that she usually still has to eat deliberately rather than out of true hunger. The main problem is that she still feels terrible most evenings. She often can barely tolerate dinner some nights (we don't force it, and she eats enough at breakfast/lunch/snack that she can do without major evening calories). She describes it as a general malaise, "like when you have a fever and you feel a little nauseous and bad all over, not really hurting in one specific place." No diarrhea, cramping, or other specific GI symptoms. It seems much more related to time of day than to anything in particular that she's eating. She's still eating no oats. She has a relatively low-lactose diet--a little milk in her morning smoothie (that doesn't seem to affect her at all), doesn't like yogurt, occasional hard cheese that would be low in lactose already. Her diet doesn't vary a lot right now. She uses ginger chews and ginger tea. We're exploring probiotics and did take them a few times, but her celiac specialist warned that some probiotics are grown on a gluten-containing medium and we are awaiting a list of approved probiotics from her nurse.  We are aware that there is probably an anxiety component--she's definitely anxious--but we also don't want to discount her symptoms after all those years of thinking she had a "nervous tummy" when it was really celiac. Does anyone have other insights or suggestions to help with evenings? thanks!
    • My daughter also loves to make ginger bread house every Christmas. I buy this gluten-free kit every December from a gluten free bakery called Sensitive Sweets.   They ship the kit to our house. http://www.sensitivesweets.com/holiday-items/gluten-free-vegan-gingerbread-house-kit
    • We are going to try to make our own this year, but I've seen some great gingerbread houses made out of graham crackers. There are plenty of gluten-free graham crackers out there--Pamela's are nice and sturdy for building! If you make your own, the nice thing is that you don't have to worry whether it tastes good.   https://www.happinessishomemade.net/make-graham-cracker-gingerbread-houses/   https://gfjules.com/recipes/gluten-free-gingerbread-house-how-to/ https://www.glutenfreebaking.com/how-to-make-a-gluten-free-gingerbread-house/
  • Upcoming Events