• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Positive Blood Test - Negative Biopsy
0

10 posts in this topic

Recommended Posts

Luci    0

I recently had the Prometheus Celiac Serology test done. My DGP IGA was 142 all others were in normal range. I then had an EGD & Colonoscopy. I received a call this morning from the Physicians Assistant that said, "everything came back good". Is there any way the blood test can give you a false positive? I have already started eating gluten free over the past few days after completing my tests,and have emailed companies to find out if my beauty/personal care products contain gluten, but want to make certain I am not making a drastic lifestyle change that is not necessary.

Share this post


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


psawyer    687

My understanding is that the DGP IgA is highly specific to celiac disease, and that a false positive is very rare.

Unfortunately, false negatives on the biopsy can occur for a number of reasons. A few:

Damage to the villi is patchy, and an affected part was not sampled (perhaps too few samples were taken;

The disease is in the early stages, and damage is not yet detectable;

The pathologist is not familiar with celiac disease and failed to recognize the damage on the slide.

Share this post


Link to post
Share on other sites
frieze    113

How many specimens did they take? not altogether, but of your small Intestine? It is possible they missed the abnormal parts..The DGP is quiet specific for celiac and not overly sensitive, so for it to be positive, wellll....welcome to the club!

Share this post


Link to post
Share on other sites
Skysmom03    8

Could it be that you have Latent Celiac Sprue? Positive blood test but no symptoms and no signs of damage to the intestines? I would inquire about that.

Share this post


Link to post
Share on other sites
rosetapper23    236

Celiac expert Dr. Alessio Fasano has written articles on this topic, and he believes that the endoscopic biopsy should no longer be considered the Gold Standard for diagnosing celiac disease based on the facts set forth by Peter above. The chances that damage can be overlooked are so high, this test can no longer be relied on. Dr. Fasano states that if you have positive bloodwork, have symptoms after eating gluten, those symptoms resolve on a gluten-free diet and then return upon resumption of a gluten-containing diet, you have celiac disease. You have made the correct changes to your life, and you will not regret making them. May you have a very healthy and happy life!

  • Upvote 2

Share this post


Link to post
Share on other sites
Ads by Google:


shadowicewolf    166

I have a positive IGA TTG (rest of the panel negative), negative biopsy (should be noted it was done 4 weeks after going gluten free), positive for both main genes, and positive reaction toward the diet. We're all different! :)

Share this post


Link to post
Share on other sites
Luci    0

Celiac expert Dr. Alessio Fasano has written articles on this topic, and he believes that the endoscopic biopsy should no longer be considered the Gold Standard for diagnosing celiac disease based on the facts set forth by Peter above. The chances that damage can be overlooked are so high, this test can no longer be relied on. Dr. Fasano states that if you have positive bloodwork, have symptoms after eating gluten, those symptoms resolve on a gluten-free diet and then return upon resumption of a gluten-containing diet, you have celiac disease. You have made the correct changes to your life, and you will not regret making them. May you have a very healthy and happy life!

Thank you so much! I have been gluten free for 1 week and have already started to feel better. It is very frustrating because my biopsy report says R/O Sprue. My fiancee says this means "rule out". They took 3 biopsies and have no other explanation of my previous symptoms of nausea, vomiting, abdominal pain, body aches. I am very grateful for the information on this website...otherwise I might have actually listened to my GI doctor and thought it ok to continue to eat gluten.

Share this post


Link to post
Share on other sites


Ads by Google:


Luci    0

My understanding is that the DGP IgA is highly specific to celiac disease, and that a false positive is very rare.

Unfortunately, false negatives on the biopsy can occur for a number of reasons. A few:

Damage to the villi is patchy, and an affected part was not sampled (perhaps too few samples were taken;

The disease is in the early stages, and damage is not yet detectable;

The pathologist is not familiar with celiac disease and failed to recognize the damage on the slide.

Thank you for your response. It really means a lot to have the validation of others that have struggled with getting an inaccurate diagnosis. I have been gluten free for 1 week and other than not being able to rely on my go to chicken sandwich when traveling and an awkward dinner with friends it hasnt been that hard.

Share this post


Link to post
Share on other sites
Luci    0

How many specimens did they take? not altogether, but of your small Intestine? It is possible they missed the abnormal parts..The DGP is quiet specific for celiac and not overly sensitive, so for it to be positive, wellll....welcome to the club!

Received the results today. They did 3 biopsies of small intestine and several in other spots. It states R/O Sprue. I have been gluten free for 1 week and I am already starting to feel better. As my daughter said, if you have to have a disease at least it is one where you can still have wine :) Such great encouraging people on this website! Very grateful to have such a great resource

Share this post


Link to post
Share on other sites
kareng    1,992

Received the results today. They did 3 biopsies of small intestine and several in other spots. It states R/O Sprue. I have been gluten free for 1 week and I am already starting to feel better. As my daughter said, if you have to have a disease at least it is one where you can still have wine :) Such great encouraging people on this website! Very grateful to have such a great resource

What did the actual biopsy results say. Rule out is really just a reason to do the procedure. The pathologist may not want to say it is Celiac. there should be descriptions of what was seen when looking at the biopsies.

Share this post


Link to post
Share on other sites


Ads by Google:


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
      107,883
    • Total Posts
      938,465
  • Member Statistics

    • Total Members
      65,788
    • Most Online
      3,093

    Newest Member
    KaitlinP
    Joined
  • Popular Now

  • Topics

  • Posts

    • Sorry to hear about the loss, bread is a pain for some, Canyon house makes one many swear by...I have 2 issues with it so I can not even try it. I been using Julian Bakery Bread for awhile, the seed one was wonderful even toast like gluten bread, while the coconut one made the most amazing french toast, and the almond one was great toasted with mashed avocado. I recent perfected a sandwich bread for my bakery, so will be making my own grain free, starch free, 1 net carb bread loafs for myself.
      NOW a bit more on this topic, I am currently converting it to a sugar free German chocolate cake loaf for testing this weekend (these are going to be bakery item only for my store)
    • Hi everyone! I am a 23 yo female and was diagnosed Celiac in January 2016 and have been gluten free since then. My IgA levels are down to 4 and my Celiac is very under control. However, I recently have been dealing with a lot of unexplainable pain and discomfort that no one can seem to explain to me and wanted to see if anyone has experienced anything similar. For about a year, I have been occasionally getting severe abdominal pain that seems to be concentrated in my rectum. It starts by feeling overall icky, crampy and sort of like I have "twinges" in my rectum. It feels like maybe I need to have a bowel movement but I dont, and if I do it doesn't help the pain. So I feel bad, and then all of a sudden I feel like I am being stabbed in my rectum. The stabbing comes and goes but causes me to like roll around on the floor it is so painful. This sometimes only happens once and is over in 20 seconds, but generally it is an all day thing and lasts like 8-10 hours. These generally have been coming 2-3 times per month one day apart. They seem to come about every four weeks (not during my period or ovulation though) and naproxen and heat helps some, so I thought it was maybe OB/GYN related (they also started shortly after I switched for BC pill to an IUD) but I have seen two OB/GYNs and both have no idea and think it is gastrointestinal, maybe gas pain of some sort that is possibly triggered by hormones related to my cycle. However my gastroenterologist is also stumped and thinks its related to my uterus cause it seems to be somewhat cyclical. Anyway they're horrible and I can't figure out what they are, they don't seem to be related to what I eat (though I should probably start tracking) or a particular time of day. Sometimes they seem to come while I am exercising, but sometimes they wake me up in the middle of the night. I should also add that I have no GI symptoms involved with these painful episodes, my bowel movements seem completely normal, no gas or anything either. Also, the last two days, I have woken up in the middle of the night with the feeling of being bloated and crampy. Not painful per say but extremely unpleasant. Again, I'm not on my period so idk what is causing this, especially cause both times it woke me up and I am a deep sleeper. Now, for the last 30 minutes I have been having non-painful muscle spasms in my left lower abdomen. It feels like a flutter, if I put my fingers against the spasm I can feel it distinctly. Again it doesn't hurt, but feels weird and I've never had a muscle spasm there before. If anyone has ever had any of these symptoms before or has any idea what me going on I'd be very grateful! Is it possible its related to glutening? Since I caught my Celiac really early I don't really know what my symptoms of being glutened are, the few times I know I have been I don't get diarrhea but instead extreme bloating, acid reflux, and overall feeling really crappy and anxious. I have a whole host of health issues these days that have been causing me a lot of stress (I'm in medical school and don't have time for these debilitating pains!) and it would be awesome to have some answers.   Thank you all, K
    • Thank you!   I see a Dietician early next month and figured I will need to be more strict early on.    There is so much to learn.  I am grateful for the apps available that allow me to scan UPC's to find out what is and is not gluten-free, but will be confirming by reading labels  too.   I cleared out quite a bit of space in my cupboard today.  It is only me in the house since I lost my husband earlier this year so it will be easier to control what is in the house.    He loved bread as much as me so it would have been much harder with the 2 of us here
    • Welcome to the board. Many of us keep safe gluten free snacks on hand for times when we are away from home.  In addition to what Karen mentioned fruits, nuts, hard boiled eggs etc. If it is a long trip a cooler can keep stuff fresh for you and they make ones that you can plug into your car. How were you diagnosed? Many folks carry the genes but don't develop celiac. You should have had a celiac panel blood test and an endoscopy. If you are new to the lifestyle then do check out the Newbie 101 threead at the top of the Coping section. it has a lot of info to keep you safe.
    • If you are super sensitive (or have become super sensitive) there is an oats purity protocol used by just a few companies. The fields do not grow gluten containing grains for 4-5 years before the oats are planted, the fields are walked several times a season for any plants not belonging to be pulled by hand, and all the equipment and facilities used to harvest are dedicated equipment. It's a bit pricey, but it produces the only oats that I don't react to (although I have not tried all certified gluten free oats).  There are a couple variations of magnesium. Some cause loose stools so check the source of magnesium (and make sure it's gluten-free). Calm I've used with no problem. If you are stressed, you will burn through magnesium faster.  Roommates create some complications. I had a shared kitchen for a vacation this past year, and I was constantly cleaning. I'm so used to my gluten-free kitchen I became very aware of sinks being used to pour pasta water in, bread crumbs left from a cut sandwich, and how much gluten a simple sponge can be exposed to. I kept my sponge to clean my area in a ziplock bag next to the sink. And if I was cleaning fruit or veggies, I filled a large bowl with water to use so I wouldn't have to always be cleaning the sink. If you have wooden utensils, make sure they aren't be accidentally used. A friend was getting cross-contaminated from shared condiments.  My celiac reactions for cross contamination are not gastro but neurological so I can't offer much with that. A proper glutening is the only thing that gives me gastro symptoms, and it is the most painful experience! In either case, I drink lots of water. I will drink a gallon on those days. Throw some Calm in there, but force fluids. I also use Ultima Replinisher (which I typically use after exercise) if I'm forcing fluids, and I drink mugs of warm broth if my gut is really not doing well.  Hang in there, C. Hope you feel better soon.     
  • Upcoming Events