Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Positive Blood Test, Negative Endoscopy?
0

9 posts in this topic

Hi - I'm very confused and a bit frustrated. I had pretty much given up on getting help for chronic GI symptoms - have been told its IBS and for all intents and purposes to suck it up. I went to a new doctor (because I moved) for something unrelated, and she ran a bunch of blood tests since I was a new patient. To my shock she called me in to tell me my bloodwork was positive for Celiac. The full panel was run and all of the numbers were considerably high (one, IGg?, was 35). I finally had my endoscopy on Thursday and the doctor said he did not see signs of Celiac, although we will wait for the biopsy to come back. I am supposed to make an appointment for three weeks from now to discuss this with him. Three weeks feels like an eternity to wait for the results, but I realize that's just because I'm anxious. Any thoughts on whether the blood test is likely to be negative, or if the endoscopy is more likely to be incorrect? Thanks for any insight!

Rachel

0

Share this post


Link to post
Share on other sites


Ads by Google:

If you went gluten free between the blood test and the endoscopy, then I'd bet money the endoscopy could be incorrect as you were healing.

If you've had these symptoms fairly recently (within the past few years, not all your life), then I'd bet the endoscopy could be incorrect as you hadn't done enough damage yet.

If the lab doesn't accept moderately blunted villi as "damaged", I'd call the endoscopy the incorrect one because they have unrealistic expectations.

If the doctor didn't take enough samples to get a fair assessment, in the most likely places of damage, I'd call the endoscopy the incorrect one because they missed it.

All that aside, the doctor can't tell - without the slides being looked at - if you have celiac or not. So, saying anything prematurely was, IMHO, bad practice.

0

Share this post


Link to post
Share on other sites

my tests were the same way - positive blood but the endoscopy was negative so my GI doc wouldn't diagnose me. but i had such a strong positive reaction to the diet, plus i tested positive for one of the genes, i decided i don't need a doctor to tell me "you have Celiac".

it's my understanding that a positive blood result is more likely to be accurate. the biopsy only tests a few small samples of your 20-something feet of intestine so there's a good chance they'll miss the damage if it isn't widespread. i think that's what happened with me - i was just lucky to have caught it before too much damage could be done.

the good news for you is the endoscopy is over with and you can start a gluten free diet now, if that's what you choose to do. no more glutening yourself just for the sake of a test.

0

Share this post


Link to post
Share on other sites

I have read over and over, and it has been stated repeatedly here by many who really know their stuff, that a false positive on the blood panel is next to impossible. If the antibodies are there, they are there. Add to that the fact that false negatives with the biopsy are most definitely possible, and I would say you likely have your answer.

SO many members here have talked about their bogus diagnosis of IBS (which some say really stands for "I be stumped", proclaimed when doctors don't know what else to call it), and how putting themselves on the gluten-free diet finally made their symptoms go away.

Welcome to the board..........you've come to the right place! :)

0

Share this post


Link to post
Share on other sites

My daughter had a negative endoscopy before her blood test results came back. Her blood test was postive and a second biopsy was done which also came back negative. Her provider diagnosed her with celiac based on the blood test. She has been gluten free ever since and feels better than she has in years. All of the vague symptoms she has experienced the past few years (belly discomfort, constipation, chest pain, skin rashes, mood swings) have all but gone away. Since going gluten free though, she has found that she has become alot more sensitive to gluten and can tell almost immediately when she has been "glutened". Luckily this rarely happens. It is so painful for her now to ingest gluten that she is diligent about making sure it does not happen.

0

Share this post


Link to post
Share on other sites




I returned positive bloodwork in 2007, but my biopsy was negative. My gastroenterologist told me not to bother going off gluten as there was no way it was causing my severe GI symptoms!! I believed him, so spent the next year of my life in severe pain and poor health due to malabsorption problems. I really wish that I had done a bit more research at the time, but I was so happy to hear that I wouldn't have to go gluten-free that I was too willing to believe it.

Things were terrible until October last year - all it took was one good doctor to see the pattern of GI problems, malabsorption and positive blood work, and she immediately told me that I had to go gluten free.

There are differences of opinion on biopsies and blood tests, celiac vs gluten sensitivity, but at the end of the day you have positive blood work and GI symptoms. That alone is enough to say it's worth trying a gluten-free diet to see if you feel better.

I would also suggest keeping a food and symptom diary, which can be useful to pinpoint other possible food sensitivities, and also to help you appreciate any symptom improvements. For example, within a couple of weeks of going gluten free I found that I was free of my chronic foot cramps and mouth ulcers, which I had never thought to associate with gluten. Other symptom improvement came later, but those first few things indicated I was on the right track.

I hope your appointment goes well, but remember that not all doctors are familiar with the full range of gluten-related health problems. I was also lumped with the IBS diagnosis, and it was never an adequate explanation. There is a lot of good information around, and especially on this board.

Let us know how it goes!

0

Share this post


Link to post
Share on other sites

Thank you all so much for the advice! The idea of going gluten free is pretty intimidating, but it sounds like I should give it a shot and see if it makes a difference. I am going to spend some time reading some posts on this board for tips on how to do this. Thanks again!

0

Share this post


Link to post
Share on other sites

Hi Rachel,

I was wondering if you ever had luck with the endoscope? What I learned from my own experience and from someone giving me advice beforehand was, make sure the doctors take enough samples of the intestine to test and to not be afraid to tell the doctor that.

:)Kirsten

Hi - I'm very confused and a bit frustrated. I had pretty much given up on getting help for chronic GI symptoms - have been told its IBS and for all intents and purposes to suck it up. I went to a new doctor (because I moved) for something unrelated, and she ran a bunch of blood tests since I was a new patient. To my shock she called me in to tell me my bloodwork was positive for Celiac. The full panel was run and all of the numbers were considerably high (one, IGg?, was 35). I finally had my endoscopy on Thursday and the doctor said he did not see signs of Celiac, although we will wait for the biopsy to come back. I am supposed to make an appointment for three weeks from now to discuss this with him. Three weeks feels like an eternity to wait for the results, but I realize that's just because I'm anxious. Any thoughts on whether the blood test is likely to be negative, or if the endoscopy is more likely to be incorrect? Thanks for any insight!

Rachel

0

Share this post


Link to post
Share on other sites

Hi Rachel,

I was wondering if you ever had luck with the endoscope? What I learned from my own experience and from someone giving me advice beforehand was, make sure the doctors take enough samples of the intestine to test and to not be afraid to tell the doctor that.

:)Kirsten

Welcome to the forum, Kirsten! Since you have replied to an old post, it's highly unlikely that Rachel will see your question since she hasn't been on the forum since Sept., 2009. Just so you now...

0

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
      104,336
    • Total Posts
      920,443
  • Topics

  • Posts

    • tom & chee!  good to know   they grill the sandwich on a separate pan?  or do you just order soup and salad.  so cool to find more places to eat out!!
    • Hi everybody,  I have had symptoms of Celiac since mid pregnancy and they have gotten worse over the last 5 months post partum. I have constipation, periods stopped, extreme fatigue,  joint pain, weak muscles, dizzyness, migraines, light sensitivity,  pins and needles in hands and feet, elevated TSH, depreason and anxiety. Was put on thyroid meds but it didn't help any of my symptoms. My doctor told me to try gluten free and reintroduce it. I tried it for 2 weeks and started feeling quite a bit better, then reintroduced it and felt worse than ever! It's definitely a gluten problem. She suggested I get the Celiac panel run so I got tested for Ttg iga, DGP igg and EMA all came back NEGATIVE! by this point I had only reintroduced gluten for a few days. She said my antibodies shouldn't go down by much in this time frame. Should I push for a referral to a GI doctor? I don't know why I feel the need for diagnosis? Probably my mother in law laughing when I said I can't eat gluten anymore and she tried to offer me things like donuts, saying it's just a little.  She just doesn't get it. So now, do I suffer for 6 weeks to get the biopsy or just stop eating gluten and be done with it.  I have also noticed while introducing new foods to my baby that he throws up whenever I give him anything wheat based. I doubt they can diagnose a baby and I refuse to damage his intestines for a diagnosis.  Maybe I should get my daughter tested as well? She is 3 and has been complaining of upset tummy and is frequently constipated. She is growing well though but is also quite thin. She is not a big eater. She may be constipated because she holds it. She is afraid to poop on the potty. Since I have had symptoms for only about 10 months, could there not be much damage yet? Sorry for the long post! 
    • The best thing you can do is get to your regular doctor and have a celiac panel run. You might also ask to see an allergist. Be sure to keep eating gluten until all celiac related testing is done.
    • Sounds like you may be alleric to something in both products. Next time you are at the store compare the ingredients of each to see if they have one in common that you don't think you eat in other products..  It might be a good idea to schedule an appointment with your doctor for a referral to an alergist to be on the safe side.
    • I don't know if this will help while you are waiting on the endoscopy but figured it might so here goes... If your life permits you could try going to bed so you can get up a couple hours earlier. Then eat something shortly after you are up like Cream of Buckwheat or Cream of Rice, an egg or something else gluten-free. You don't have to have gluten at each meal while waiting for your testing to be finished and something gluten-free for breakfast may sit better. You can get your gluten at lunch or dinner. By getting up a couple hours earlier that may allow you system to 'clear' the D and relieve a bit of the anxiety.  Ask your doctor if you can take something like Immodium with the antidepressant. That may help your day be easier and lessen the D the next morning.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,391
    • Most Online
      1,763

    Newest Member
    Zodi1993
    Joined