Confusing Celiac Blood Test Results

[Bree J]

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.

[kareng]

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.

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

 

Edited June 11, 2018 by kareng

[cyclinglady]

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).