Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

Lots of celiac symptoms but negative blood test? Need advice!


brittanyf

Recommended Posts

brittanyf Newbie

Hi all! I’m new here, but am at my wits end…I’ve been struggling with what seems like classic celiac symptoms and just got results of my blood tests which came back negative. I don’t WANT to have celiac, but feel scared/frustrated with not knowing what’s happening with my body and am worried about what else it could be?


For the past year I’ve had intermittent diarrhea issues, but became a major problem about 5 months ago- like a light switch, my body just changed on me (several times a day, yellow in color). I was taking Bentyl (IBS med) on a daily basis and on some days that didn’t even work. I also noticed hair loss, occasional sore mouth with metallic taste (has anyone had that?!), abdominal pains after eating (like central abdomen area, not severe or cramping, just sharp noticeable pains that I’ve never had before), undigested food in stool and now more recently fatty and pale stools depending on what I eat. My other labs were unremarkable, except low vitamin d and lower end of normal for B12 (I’ve been low for years and have needed shots in the past). I also have several years history of hormonal acne and migraines. This is random, but I also tend to get heart palpitations and feel like my heart is beating out of my chest after eating most meals (haven’t noticed if it’s only gluten foods or not).


It seems like I’m just not absorbing any food or nutrients and it’s freaking me out! When the tests came back negative I cut out wheat, dairy and high fodmap foods anyway just to try to figure it out on my own and felt great (except that I was losing more weight bc I couldn’t eat much). But recently since I’ve been feeling good have gone back to regular foods and am so sick again. I will say, since cutting out those foods for 2 weeks my abdominal pain has basically completely gone away! Just diarrhea, and within like 6 hours after I eat a meal, I’m seeing those foods in the toilet - sorry this is so descriptive!  

Anyway, I see GI in three weeks and wonder if anyone can ease my mind if they had similar symptoms? Could it still be celiac, or should I be freaking out about some other health issue? 


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



Celiac.com Sponsor (A8-M):
Daura Damm


plumbago Experienced

Just to understand the timeline here. You say you cut out the wheat, dairy, and high FODMAP foods for two weeks, but you "just" got your lab results back? So you were not eating the aforementioned foods at the time of the blood draw? It's confusing because you also say that after the negative tests you stopped eating those foods. Let's first clarify the timeline here - what were you eating two weeks before the blood tests?

brittanyf Newbie

Sorry! Yes, that was typed confusing/weird…I was eating my normal gluten containing diet up to the blood work, got the results on 3/30, started the next day of changing my diet pretty drastically- 3/31-4/12. Then fell off the rails over this past weekend thinking I was feeling better and had a friend’s birthday, etc. At first, the individual foods didn’t bother me (I.e. creamer in my coffee, more seasonings in my food that are high fodmap) so I thought for some reason I’d be good. But after a couple days (4 at this point) my stomach isn’t happy, but I can’t pinpoint exactly what food it is.

Scott Adams Grand Master

Feel free to share your blood test results here, and if you do include the reference ranges, because sometimes negative results aren't so negative (borderline readings are often just called "negative" by doctors, but elevated antibodies still must be explained).

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  

brittanyf Newbie

Thanks for your reply! Here were my results:

tTg-IgA: <2 U/mL (standard range=0-3)

tTg-IgG: <2 U/mL (standard range=0-5; weak positive 6-9, positive >9)

Endomysial Antibody IgA: Negative (all it says)

* I guess I’m just concerned/confused with symptoms of malabsorption and if anyone has had similar issues with NCGS? (Fatty/pale stool, undigested food in stool, hair loss due to low vitamins :( )

thanks for your help!!

Scott Adams Grand Master

How much gluten daily were you eating before your blood panel was taken?

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

  Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

  • Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
  • Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;
Expand Quote  

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

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

  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      128,436
    • Most Online (within 30 mins)
      7,748

    lizzie42
    Newest Member
    lizzie42
    Joined

  • Celiac.com Sponsor (A20):
    Tierra Farm


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    NutHouse! Granola Co.



  • Upcoming Events

  • Posts

    • lizzie42
      My 3yo was just diagnosed after months of iron supplements barely bringing up her ferritin. I say diagnosed but it's not official yet. Her tTG was 109, her ema was positive. Also she has a vitamin d deficiency in addition to the anemia. She also has the rash. It's been a rough road the last year and a half with her behavior and health and I'm relieved to have an answer.  Is she going to have to have a biopsy with numbers like that? I want to just start gluten-free immediately but waiting to try and schedule with a pediatric GI doctor. It will have to be remote because there isn't one here.  I hate having an answer but still feeding her gluten.  Also, how can I help her rash? We've used aquaphor...
    • trents
      If I may put my two cents in here . . . Coffee (caffeine) is a double-edged sword when it comes to headaches. It can relieve them (that's why caffeine is put in many over the counter pain relievers) but it can also cause them - particularly if you consume coffee/tea/soda often and regularly and then are in a situation where you have to go without it for a longer stretch than you are used to. Those who suffer from migraines may likely be more sensitive to the effects of caffeine or the withdrawal of it I'm thinking. And then there is the potential negative impact caffeine can have on sleep patterns for many people. Disruption of sleep patterns is also a migraine trigger for some. I speak...
    • Sarah Grace
      Hello Knitty Kitty, Many thanks for asking about my progress.  Its mixed....  I've been taking Benfotiamine since November.  I started on 300mg, but I didn't notice any change.  Increased to 900mb in 300mg tablets throughout the day and initially it seemed to be a cure.  But then the Hypoglycaemia and migraines started to return...it's really very difficult for me to control my diet.  I'm still taking the Benfotiamine but I now take the Benfotiamine in the evening and usually about 600mg after my early evening meal.  I'm still very sensitive to carbs and especially alcohol and sugar, which makes any social activity really difficult especially in the evenings and having to avoid all gluten as...
    • Liquid lunch
      Thanks kitty, I needed reminding about thiamine. I ran out of magnesium so stopped taking it and that was ages ago, it definitely helps with my energy levels and general function. I just took some now and I’ll get some more magnesium. Although I don’t really understand the gundry list it does seem to correlate with foods I can/cannot eat, lectins are not all made equal and it seems to be personal which we react to but some are generally more problematic than others, I think he’s based the list on avoiding lectins that people are often reacting to on an igg test. I think it’s fructose I’m reacting to in fruit rather than histamine because I’m fine with coffee, not sure of the quantity of...
    • glucel
      hey knitty, thanks for the follow up. I did buy the benfotiamine before I saw a couple of the side effects that concerned me esp bracardia. I already have irregular heart beat and have had elevated liver enzymes before. I lowered the count by taking milk thistle in case anyone interested. I realize that many side effects are simply for legal protection but at my age and as a recovering heart patient can not take risk. Anyway, been strictly gluten-free since we last talked. I did add 200 mg of vit b1 in addition to the b complex. Not as much b1 as you suggested because of my conservative nature but at least an attempt. I still have substantial bloating which unfortunately is probably not...
×
×
  • Create New...