Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Negative Blood Test, But Have Regular Celiac Symptoms?


mikacurl247

Recommended Posts

mikacurl247 Newbie

Well first i want to say it is 2am in the morning so if typed as if i was drunk, please excuse me=)

Hello, I recently visit my doctor and asked her for a Celiac test...and well it came back negative=(

But i am still having some weird celiac-ish symptoms. Most of my symptoms i have been having for over a two years.

My symptoms include :

**Very upset stomach- I even wake up every morning with a miserable stomach.

**Rashes - I get a rash around my mouth especially when i consume gluten containing oatmeal.

I also have a rash on both of my arms.

**Numbness/tingling

**Headaches

**Sever bloating & gassy stomach - I am bloated every single day!

**Lactose Intolerant

**Cramps - especially after eating pasta

**Very Fatigue - I am tired all the time, and the bloating doesnt help

**Diarrhea

**Lost of menstrual

***Im not underweight but i am overweight, and i am currently loosing some of the weight.

And most recently(for the past 3 weeks) i cut out most starches(beside starchy veggies, potatoes, rice, and certain wheat bread). But i have now started to re-incorporate the breads & pastas back into my diet, and since then my legs and butt area have been feeling sore! Like as if i had fallen on my butt a few thousand times or someone kicked me in that area!

I really want to know have anyone you had the sore butt feeling?? I am really concerned about that.

Also, Should i go on a gluten free diet? Should i get more test done?

Please help!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rgarton Contributor

I'm sorry your feeling so lousy, i don't know the sore butt feeling but general achiness yes! My mum has been celiac most her life but has only just got a dignosis, at 43! Shes had countless blood tests for celiac that all came back negative so when i got diagnosed she opted to have the biopsy, painless! And it came back positive! So ask for a biopsy and see nothing to lose! I hoep you find success or a doctor who will try every test until they realise whats wrong. I had to change doctors 5 times before i found mine who got me diagnoses within two visits. Good luck!

ravenwoodglass Mentor

False negatives are not uncommon with both the blood test and biopsy. You do need to be eating gluten for the best chance of an accurate test for both. After you are done with all the testing you choose to do then do a very strict trial of the diet no matter what the results. It is best to go with whole unprocessed food when you are doing the trial and also drop dairy at the same time.

debbie7730 Newbie

I am in the same boat. I tested negative for Celiac disease, but I have many of the symptoms. To top it off, my mother suffers from Celiac (she tested positive), so I think that the chances that my problems are caused by something else are unlikely. My mother is coming out next weekend for two weeks, so I am just going to try the gluten free diet while she is here and for a couple of weeks after and see if I improve. I haven't been able to get the doctors to take seriously that this is what is giving me the problems. Thus, I am going to try the diet (which from what I understand is the best diagnosis anyway). Good luck figuring out what is wrong with you. I hope we all get some answers and relief from our symptoms. :)

mikacurl247 Newbie

thanks everyone :D

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.