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):



    Celiac.com Sponsor (A1-M):


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

Confusing Celiac Blood Test Results


Bree J

Recommended Posts

Bree J Apprentice

Sorry for the long post, I've been dealing with this forever and want to figure it out!

Hi, I just got tested for celiac (blood test at a family practice (USA)) without knowing that I had to have been eating gluten regularly for it to show anything. I read forums here that said so, so I called the doctor's office before my test to ask if that was true, and they put me on with a nurse that said "I've never heard of that, but let me check the test we have....Oh, yep, it says to eat gluten. So just eat some bread before you come today." Seemed doubtful.

I ended up NOT eating any gluten, and I've been actively avoiding wheat for at least 3 years (I noticed a gluten intolerance when I started college, my dad and uncle and 2 cousins can't eat it either). I was accidentally glutened with the tiniest bit of fajita seasoning from a restaurant 3 weeks prior to my blood test, but that's it. I didn't want to make myself sick with bread after reading that the blood test really only works if you've been eating it for weeks/months, so I went and got tested with basically non gluten in my system at all.

The test itself said "negative." But I've attached a screenshot of my levels. After talking with the nurses on the phone twice, I'm convinced they know nothing about it.

My antibodies were low/normal, probably because I haven't eaten gluten in years. (I sometimes drink beer made with barley instead of wheat because it doesn't give me horrible stomach cramps, but I hadn't had any in probably a month). The one thing that seemed "high" to me for someone who hasn't eaten wheat in years was the tTG IGA (I have no idea what that means). Mine said 7.2 U/mL (again, whatever that means). This family practice test says that a normal level is under 15 U/mL, but all my other levels are less than 1. After some research, I came across what "normal" levels should look like and Mayo Clinic suggested under 4.0 U/mL is negative for celiac (Open Original Shared Link) [4.0-10 is a "weak positive"]. 

Like I said, I'm not very trusting that the practice I went to knows anything about celiac. I know if I want a diagnosis I should go to some specialist. But I really don't want to get put under just to be told "yep, do exactly what you've doing for years, avoiding gluten."
So, I decided to sort of "self-diagnose" myself with celiac JUST to make myself be extra careful, you know, just in case my intestines are damaged whenever I get cross-contaminated food. 

My question is: does anyone else think it's possible I have celiac? Or am I being nuts?

Recap & Symptoms:

In 2014 I could barely eat anything in my house because I would be sick with horrible stomach cramps and constipation that would make me cry and have to stay home the next day. I lost weight then. Someone suggested going gluten-free, and I knew my dad was doing that because he had a couple passing-out episodes and similar gut pain. My uncle (dad's brother) also has a sever intolerance to gluten, like it gets him hospitalized because of malnutrition and cramping (I'm pretty sure he has celiac, but he's too stubborn to get tested). I tried avoiding gluten for a week and felt way better. Now I've been gluten free for years. Like I said before, though, I am not careful with barley and rye. Malt hurts me a lot, and when I take one bite of, say, a donut thinking it'll be worth it (I miss donuts..) it NEVER is. I'm out for two days after that.

If I get glutened, I experience: fatigue, horrible cramps, gas (that won't pass), constipation (for days), foggy head, itchy skin, irritability, and my appetite fluctuates like crazy-- one minute I'm so full I can't think of food, another I'm starving.

blood test.webp


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



Celiac.com Sponsor (A8-M):



kareng Grand Master
31 minutes ago, Bree J said:

Sorry for the long post, I've been dealing with this forever and want to figure it out!

Hi, I just got tested for celiac (blood test at a family practice (USA)) without knowing that I had to have been eating gluten regularly for it to show anything. I read forums here that said so, so I called the doctor's office before my test to ask if that was true, and they put me on with a nurse that said "I've never heard of that, but let me check the test we have....Oh, yep, it says to eat gluten. So just eat some bread before you come today." Seemed doubtful.

I ended up NOT eating any gluten, and I've been actively avoiding wheat for at least 3 years (I noticed a gluten intolerance when I started college, my dad and uncle and 2 cousins can't eat it either). I was accidentally glutened with the tiniest bit of fajita seasoning from a restaurant 3 weeks prior to my blood test, but that's it. I didn't want to make myself sick with bread after reading that the blood test really only works if you've been eating it for weeks/months, so I went and got tested with basically non gluten in my system at all.

The test itself said "negative." But I've attached a screenshot of my levels. After talking with the nurses on the phone twice, I'm convinced they know nothing about it.

My antibodies were low/normal, probably because I haven't eaten gluten in years. (I sometimes drink beer made with barley instead of wheat because it doesn't give me horrible stomach cramps, but I hadn't had any in probably a month). The one thing that seemed "high" to me for someone who hasn't eaten wheat in years was the tTG IGA (I have no idea what that means). Mine said 7.2 U/mL (again, whatever that means). This family practice test says that a normal level is under 15 U/mL, but all my other levels are less than 1. After some research, I came across what "normal" levels should look like and Mayo Clinic suggested under 4.0 U/mL is negative for celiac (Open Original Shared Link) [4.0-10 is a "weak positive"]. 

Like I said, I'm not very trusting that the practice I went to knows anything about celiac. I know if I want a diagnosis I should go to some specialist. But I really don't want to get put under just to be told "yep, do exactly what you've doing for years, avoiding gluten."
So, I decided to sort of "self-diagnose" myself with celiac JUST to make myself be extra careful, you know, just in case my intestines are damaged whenever I get cross-contaminated food. 

My question is: does anyone else think it's possible I have celiac? Or am I being nuts?

Recap & Symptoms:

In 2014 I could barely eat anything in my house because I would be sick with horrible stomach cramps and constipation that would make me cry and have to stay home the next day. I lost weight then. Someone suggested going gluten-free, and I knew my dad was doing that because he had a couple passing-out episodes and similar gut pain. My uncle (dad's brother) also has a sever intolerance to gluten, like it gets him hospitalized because of malnutrition and cramping (I'm pretty sure he has celiac, but he's too stubborn to get tested). I tried avoiding gluten for a week and felt way better. Now I've been gluten free for years. Like I said before, though, I am not careful with barley and rye. Malt hurts me a lot, and when I take one bite of, say, a donut thinking it'll be worth it (I miss donuts..) it NEVER is. I'm out for two days after that.

If I get glutened, I experience: fatigue, horrible cramps, gas (that won't pass), constipation (for days), foggy head, itchy skin, irritability, and my appetite fluctuates like crazy-- one minute I'm so full I can't think of food, another I'm starving.

blood test.webp

Those are all negative - but you would expect that if you have been basically gluten-free for many years.  

 

Really doesn't tell you anything because you don't know if you have Celiac or not.

 

Open Original Shared Link

 

cyclinglady Grand Master

Every lab is different.  I have no idea why Mayo would publish their ranges unless their site is directed at their patients.    You have to go with the lab ranges.  These are not dictated by a family practice but the lab.  

You have a choice.  Stay gluten free or do a gluten challenge as KarenG suggested (all celiac testing requires you to be on a full gluten diet).  

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,772
    • Most Online (within 30 mins)
      7,748

    Claudia Hyde
    Newest Member
    Claudia Hyde
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jack Common
    • trents
      Eating out at restaurants is the single most risky environment for cross contamination.  Shared oven racks should be thoroughly cleaned after being used for cooking/baking of gluten containing foods. Better yet, purchase a second set of racks that are used only for one or the other.
    • Brandy969
      This is an expanding question on this topic, I’m not sure where to put it…. I get mixed answers on this but sense I’m Coeliac and my husband isn’t we do still use the same kitchen and cooking utensils-for the most part. I was told by dietitians and GI dr that only soap and water will “kill” the gluten. I am still so confused about this topic, even after being gluten-free for 3 years. I’m sure I’ve accidentally gotten cross contamination, but haven’t knowingly put anything with gluten in my mouth! I probably get more contamination from eating out than in our “shared kitchen”. I make all my bread in a gluten-free bread machine, and he generally uses a toaster oven to heat up gluten containing items. I bake both regular and gluten-free items in our oven, (Not at the same time). I’m constantly wiping down counters and cabinets with soap and water. I keep gluten-free items in a separate cabinet. I don’t seem to be super sensitive to gluten. I was confirmed by blood and on colonoscopy about 15 years ago, but continued eating Gluten not really knowing the damage I was doing to my body.  Can anything besides soap and water “kill” gluten? How hot would an oven have to be before killing it? So any kind of soap and any temp of water omit the gluten? That makes no sense to me if a 500 degree pizza oven won’t kill it. How can a dab of soap and lukewarm water do what heat can’t do?   thank you for putting this where it needs to be if this is the wrong spot!  sincerely needing advice, Brandy J  
    • trents
      I would say the tTG-IGA would be sufficient.
    • Jack Common
      I think I don't have any symptoms now. I have some fogginess but I'm not sure whether it's gluten. I think the gut related problems I described above were caused because I had giardiasis. It was treated and now I feel much better. However I started a gluten free diet after the parasite treatment so it's a bit unclear what was the reason. I'm going to repeat the tests after 2 months from now eating gluten to be sure it was giardiasis. Is it enough to do just "Deamidated gliadin peptide IgA" and "The Tissue Transglutaminase IgA antibody"? Because my Immunoglobulin A result is normal IgG tests are not necessary if I understand it right. By the way, Merry Christmas!
×
×
  • Create New...