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

[brittanyf]

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? 

[plumbago]

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]

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]

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]

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]

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;

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