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 Bloodwork... What Should I Do Next?


amandanoelle889

Recommended Posts

amandanoelle889 Newbie

I have suffered with chronic constipation, diarrhea, abdominal aches, excessive flatulence, and lactose intolerance all throughout high school. Earlier in the year, I self-diagnosed IBS as the cause of my symptoms. After seeing a Gasteroenterologist, he agreed that I probably had IBS. Months later, although not strictly adhering to an IBS diet, (it has been difficult as I am living at home, and not the main cook in the house,) my doctor suggested Celiac Disease testing. After much research, it seems I've found something that really fits the bill! I haven't had a normal bowel movement in months, but after a day and a half of cutting gluten out of my diet, alas, I had a normal movement! This may sound like a silly victory for most, but it really convinced me. I didn't stop eating gluten any longer than that as I knew I would have to be on a gluten diet for effective test results. Yesterday my TTG and IGA(?) came back negative. I am setting up an appointment with my Gasteroenterologist today, so I will have more specific results to share soon, but I really feel as though I should look further into this disease. I would like to request an intestinal biopsy and a gene test. I am also in the process of contacting an Allergist. Does this seem like the right thing to do? Where should I go from here?

Current Symptoms:

* Recurring bloating and abdominal pain

* Excessive flatulence

* Lactose Intolerance

* Chronic diarrhea and constipation

* Occasional pale, foul-smelling stool

* Mucus in stool

* Joint pain (I also have mild Scoliosis)

* Behavior changes/depression/irritability

* Fatigue, weakness, lack of energy

* Irregular menstrual periods

* Irritable Bowel Syndrome (IBS)

* Memory loss, anxiety, concentration issues

Disorders in the family:

* IBS (my father and I)

* Type 1 Diabetes (first cousin)

* Eczema (first cousin, brother)

* Peripheral Neuropathy (aunt)

* Osteoporosis (paternal grandmother)

* Wheat Allergy (aunt)

Sometimes I feel like a hypochondriac, and that I'm just being crazy about my symptoms. Especially being younger, 18, hasn't helped. People don't tend to take my symptoms as seriously. My family tries to adhere to my dietary problems, but I simply don't think they put much thought into it. I get mildly sick at least once a day, and I really want an answer. I feel weird admitting it, but I was kind of sad my tests came back negative. Does this make sense to anyone here? Help, please!


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



Celiac.com Sponsor (A8-M):



wschmucks Contributor

Hi there! First off let me tell you not to second guess yourself. Dont let people make you think youre crazy. Your feelings and concerns are perfectly valid and if you dont listen to your body you WILL pay for it later. OK so the blood test is very unreliable. You can have Celiac and have a negative blood test. So what you need to do is have a biopsy (make sure you are eating gluten for about 6-4 wks every day before so you dont miss the diagnosis). To complicate things even more, some people dont have a positive biopsy but still have Celiac. I think its worth it to have the biopsy though. If you feel better not eating gluten then dont! But Id go through the testing first.

I have a probelm with the term IBS. I dont think it exists--i just think its a label Drs put on people when there is a GI problem and they dont know what it is, or how to fix it. So keep on trying to find the answer and if your Dr isnt helpful then go to another one. I went to about 4 Drs before I got diagnosed. One Dr doesnt know it all.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,199
    • Most Online (within 30 mins)
      7,748

    Carlos Burbano
    Newest Member
    Carlos Burbano
    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

    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
    • trents
      @JettaGirl, "Coeliac" is the British spelling of "celiac". Same disease. 
    • JettaGirl
      This may sound ridiculous but is this supposed to say Celiacs? I looked up Coeliacs because you never know, there’s a lot of diseases related to a disease that they come up with similar names for. It’s probably meant to say Celiacs but I just wanted to confirm.
    • JoJo0611
      I was told it was to see how much damage has been caused. But just told CT with contrast not any other name for it. 
×
×
  • 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.