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

"negative" Blood Test But Still Symptomatic
0

7 posts in this topic

Hi! I'm new here! Just signed up! I am a Type 1 Diabetic (diagnosed in 2008 at the age of 27)...and in addition am "lucky" enough to have another auto immune disorder - Vitiligo. Since diagnosis, my bilirubin has been higher than normal - never alarmingly high, just high enough to warrant my own concern. In 2010, I had my gall bladder removed and still am finding the whole bathroom thing a concern! I never know which foods are going to send me running to the bathroom and which ones I will be fine with. On top of those things, I have dermatitis and recurrent headaches...so enough that made my doctors think Celiac might be an option. I had a panel done but it was "negative". I was concerned enough still that I went to see a GI specialist who told me that just because I tested "negative" that she was not convinced I did not have Celiac due to my preponderance of other symptoms. So I have an upper endoscopy scheduled for the 19th. I am very "excited" to see what the results will be just for my own peace of mind. I guess what I am wondering is whether anyone here ever tested "negative" but an endoscopy showed Celiac? How common is that?

0

Share this post


Link to post
Share on other sites


Ads by Google:

I've seen several people on here mention that they were positive on biopsy, but negative on blood tests. Also, if you have or can get the actual blood test results with reference ranges, etc. and post them here some of those who are more familiar may have some input. In particular, it would be good to know which tests were part of the 'panel'.

And welcome to the forums!

0

Share this post


Link to post
Share on other sites

Hi - thanks for the reply! Unfortunately my endo ordered the tests and he never gave me any of the numbers - just told me I was "negative". I have reason to believe from what my GI specialist told me that the panel may have been incomplete. I think she plans to run the tests again and do a complete panel so I will get the numbers then!

Thanks for the welcome!! :)

0

Share this post


Link to post
Share on other sites

You can request records if you are in the U.S.

Also consider looking into the genetic test.

0

Share this post


Link to post
Share on other sites

Request the records from my doctor, you mean?

I don't know if Celiac runs in my family, but I guess you never know...it could be way back there..

0

Share this post


Link to post
Share on other sites




I would definitely ask for a copy of your blood tests. Chances are very good that you did not get the complete panel of tests. Even if you did, a negative result does not rule out Celiac. Sort of, if it is positive, you know, but if it is negative, you should still keep looking. Same with the biopsy. It can be falsely negative for a variety of reasons. After the procedure, start the diet. Think of it as the "final test." Do not let negative blood or biopsy results lead you to believe gluten is not causing your symptoms.

When you try the diet, give it 3 months. I found that tracking my symptoms really helped. I used a calendar and started while I was still eating gluten. I jotted down how I was feeling and any symptoms I had. I continued after I started the diet and week after week, I had less to record on the calendar. It was gradual, but looking back, remarkable.

Good luck to you -

Cara

0

Share this post


Link to post
Share on other sites

Thanks so much for all the information and advice! It makes all of this much less daunting. Although if I have it, I have a feeling cutting out all the gluten in my life is going to be much harder than I am imagining at this point.

Will definitely ask my endocrinologist for more details about my test results. I have to call him for advice regarding fasting for the endoscopy and my diabetes. That's what I'm most worried about! I already had to reschedule an ultrasound before the endoscopy because my blood sugar was low!

Another question - have a lot of you had your gall bladder removed? Was it pre or post diagnosis? Previously I had chalked up all my stomach upset to the removal of my gall bladder but when I read about some of the other symptoms that fit what's going on with me, I started to suspect Celiac a bit more.

I have also read that often people with Celiac will not react to all forms of gluten before going off gluten entirely because they may have just gotten used to a food that they eat frequently (ex: I eat crackers all the time and I never react to those!) but then when going off gluten altogether if they eat those foods again, they will experience a reaction because their bodies are no longer "used" to that food.

Is this true?

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
      103,878
    • Total Posts
      919,449
  • Topics

  • Posts

    • So I've been glutened....
      That sounds like a plan JMG.  If things aren't working then make a change, hopefully a positive change.  It seems to me we have more noticeable symptoms sometimes after being gluten-free a while.  I made a mistake last night and ate some tuna canned in water.  It definitely wasn't boring.  I usually have more sense than to eat tuna canned in water but screwed up last night.  They canned  it in broth of some sort.  Ingredients say vegetable broth and soy.  Yuck, not good for me.  It sure tasted good though, just ouch.  I am not saying it had gluten in it, but it does have soy and some kind of unnamed veggie monsters.  So it could be soy, or carrots or some other disgusting vegetable that got me.   Not all celiacs have additional food intolerances beyond gluten, but some do.  My gut could testify to that.  Anyway, if you have bloating, cut out all carbs and sugar for starters.  And try peppermint tea or Altoids.  Over here we have something called Pepto Bismol that helps soothe gut pain and another neat thing called aspirin.  And gluten-free beer as needed.  
    • Gluten free apparently not helping entirely
      Jean, Maybe your boss can find you a job in the office for a while?  It's worth asking maybe? It's not easy being on constant travel with celiac disease but it can be done.  Your effort to find safe food is going to be harder than most but it is not impossible.  But if you can't manage it you should really think about getting a non-travel job.  Your boss may be willing to work with you on an office position, even if it's temporary.  That would give you some time to look for a local job and also eat a safer diet. It's really up to you to control your diet and make sure it is safe.  If you can't figure out how to  do that while traveling you owe it to yourself to figure a way out of the travel. Celiac disease isn't always fun and games.  Not always.   I hope you find a way to improve your circumstances.
    • Gluten Free baby food pouches?
      Anyone know of any baby food pouches that are gluten free?  We love to have them on the go for our kids (not just baby), but I have no idea which ones to get now!  We used to get Meijer brand and Plum.   Thanks!
    • gluten free, oat free, egg free breakfast ideas needed for 6 year old
      Thanks for everyone's suggestions!  I think I felt at a loss when we had to cut oats- we used to do cheerios and oatmeal regularly and now those are out.  She has a sensitivity to oats as well as wheat/barley/rye. 
    • So I've been glutened....
      The bloating has, if anything, got worse. It seems better when I'm lay down, when I stand it gets worse. Although the lymph swelling has gone down so maybe I'm through the worst. Hope so anyway... I never used to get a great deal of GI symptoms. Certainly not so serious as the other stuff. It's making me wonder if I just react differently now having been gluten-free for some time. I've noticed lot's of you saying that reactions seem to change over time. Of course its possible the other stuff was masking the GI things. I almost dont trust my memory of those times anymore because a whole chunk of my life seems to have been lived through a brain fog. Tomorrow I'm thinking of going away for a couple of days, maybe just taking some ultra simple food with me so I can try and settle my stomach by boring it into submission      
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,918
    • Most Online
      1,763

    Newest Member
    dae
    Joined