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

What Do You Think?
0

4 posts in this topic

I have been suffereing with strange symtoms for three years. It wasn't until my doc sent me for a celiac screen (blood test) that I suspected or even heard of it. I went off of gluten after the test. I felt soooo much better. The test came back negative and she told me that it was a very accurate test, I don't think this is my imagination. If I eat gluten I feel very dizzy, lose the feeling in my extremities and get horrible pain through my chest that spreads, like heart attack pain, I feel very tired and almost insane. I don't recognize myself. I asked her if I could be sensitive and not celiac, she really didn't know what to say other than stay away from gluten. Could the test be wrong? Or should I accept this answer? I know the bottom line is that I feel better no matter what anyone says. I was just wondering what you guys would think of this result? Thanks for a great place to chat!! :D

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi mysterypain! Welcome to the board! To answer your question, all doctors think the bloodwork is a very accurate test but it's not! Yes you can have negative blood-work and biopsy and still have Celiac Disease! The fact that you felt better after going gluten-free is a very good sign that you have celiac disease, not to mention the symptoms you experienced when you ate gluten.

If you need a docs diagnosis I would suggest using Enterolab stool panel test and it's accurate!

I hope this helps! :D

0

Share this post


Link to post
Share on other sites

Yeah...

I'm going through the same thing right now. I have all the symptoms...bloating, diarrhea, upset stomach, floating stools, hair falling out...everything except being underweight. Except the Gliadin IgG, which was a weak positive, all the lab tests have come back negative.

However, after reading some information on the www.enterolab.com site, it appears as though the EMA test is very specific but not very sensitive. This means that if it is positive, there is no possible way it is a false-positive...you have Celiac. However, it being negative doesn't mean much.

It being negative only means that the villi in the small intestine have not yet totally atrophied. This is because it is a blood test, and for the antibodies to get from your small intestine to the blood there must be some major, major damage. Only 30% of the people with partial villi-atrophy tested positive on the EMA / transglutamine tests even though there was, indeed, some damage to the villi.

I may be spelling some of these words wrong (sorry about that), but if you go the thread I started today (I'm Simply), gf4life has posted some links that give more details.

You ought to check them out.

Simply

0

Share this post


Link to post
Share on other sites

Hi!

I am new here too. I feel like I am going through the exact same thing! I just got my test results and they were "normal". I'm not sure which my doctor ordered but she sent me the results so I'll know soon.

Good luck! Hopefully we'll both find some answers.

Chris

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
      920,446
  • Topics

  • Posts

    • It starts as a piercing itch and the skin turns reddish with a few tiny red bumps. Then tiny watery vesicles appear and itch like crazy. The whole process from start to finish is about 3 weeks and the lesions leave a purplish skin tone and scab. I get them on the back side of both knees near the bend.  Sometimes it's just a few scattered vesicles in the same area. I've had Drs say eczema or herpes. My next step is to find a dermatologist familiar with dh. Thanks for the input.
    • DH can look like that but other things can as well. It would help if you described the way it acts/presents. You can get a dh biopsy. Read threads in this section to find out how the biopsy is done correctly. 
    • my celiac was triggered by pregnancy.  had no clue.  symptoms creeped up (started with indigestion, deemed as 'colitis' or 'ibs') but eventually all the ones you mentioned above all joined the party.  sounds like you are headed in the right direction.  one of the points of diagnosis is the reaction to the gluten-free diet.  keep digging.  half the people on here don't have a firm diagnosis (science really needs to catch up with this disease)  and a false negative blood test is fairly common, for whatever reason - if you've not been eating gluten every day for like 8 weeks, it may not detect antibodies, which is what these tests are measuring.  sorry you're having this dilemma!  hope you find some answers.
    • 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! 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,395
    • Most Online
      1,763

    Newest Member
    olenalrz
    Joined