Celiac blood panel normal. What in the world could be wrong with me?

[Barebears]

I am constantly sick to my stomach. I’m always nauseated after eating and I get really bad stomach cramps at least a couple times a day. I also throw up at times because of the nausea. This all started maybe about a month or two after I had my last baby. He is 6 months old so this has been going on for several months now. The thought of food is starting to disgust me because I know how sick it’s going to make me feel once I eat it. This list of foods that I can’t eat just keeps getting bigger and bigger. I told my husband last night that I should just start eating plain salad leaves from now on because that’s pretty much the only thing that sounds good to me at this point. I thought for sure my celiac panel would come back positive for celiac because of how awful I feel but I guess not. I also have trouble gaining weight (I’ve actually lost 7lb this month without doing anything differently) and I am always anemic. I’m also kinda not surprised it came back negative because nobody in my family has celiac. I have an endoscopy scheduled at the end of the month so they can get a better look at things but what if they don’t find anything? That may sound like a good thing but it’s not when you are constantly suffering. I just want to know what’s wrong so I can get it fixed. Does anyone else have this problem?? 

[GFinDC]

Hi, what celiac tests did you have and what were the results and the ranges?  IgA, IgG, EMA,  total serum IgA?

There are several antibody tests they can do, but often they don't do all of them.  Some people don't show up on the blood tests but still have celiac disease.  There's also the possibility of an ulcer or some other condition.

[cyclinglady]

Ditto what GFinDC said.  You should ask for the complete panel.  I never get a positive on the standard popular screening tests: TTG or EMA.  Good thing my GI ordered the entire panel or my diagnosis would have been missed.  

Just want to clarify....where you consuming 1 to 2 slices of bread (or equivalent) 8 to 12 weeks prior to the blood test?  If you were gluten light, that can impact the blood tests.  You need to be consuming gluten prior to the endoscopy too.  You need to be on gluten a good solid two weeks that test to be accurate.  

I am also the first in my family to be diagnosed.  I went for a routine colonoscopy because I am over 50. My GI saw in my chart that I had been anemic for as long as they had measured it.  My anemia was blamed on supposedly “heavy” periods.  I did not even have any GI issues at the time.  

 

 

Edited December 21, 2019 by cyclinglady

[Barebears]

This is the tests they did. I’m not sure of the results. The just told me it came back normal. I have been on a regular diet. I didn’t do anything special before the blood test. 

[cyclinglady]

It looks like you had the TTG and maybe the EMA or they did not do the EMA test because your TTG was negative.  In any case, the DGP IgA or DGP IgG tests were not given.  Again, I tested negative to the TTG and EMA even on follow-up testing.  Not common, but it happens.  You can ask the GI when you go for the endoscopy to run the DGP tests.  Often, primary care physicians are not authorized to run an entire panel, but GIs are.  

Be sure biopsies are taken in both the small intestine and stomach.  Four or more tissue samples are recommended in the small intestine.  Have them rule out SIBO or Inflammatory Bowel Disease.  My niece tested negative on celiac tests, including biopsies, but a pill camera found damage from Crohn’s disease that was out of reach of both scopes.  

Find out the cause of your anemia and the type.   I have a genetic anemia which masked my iron-deficiency anemia (which was blamed on my menstruation cycle (not true)!  You can have more than one type of anemia!  

 

[frieze]

Gallbladder

[cyclinglady]

3 hours ago, frieze said:

Gallbladder

Why did I not think of the gallbladder?  Good call.   I had my gallbladder removed (non-functioning).   A HIDA scan confirmed it.   Looking back I wonder if I had been diagnosed sooner with celiac disease, my gallbladder might have healed.  

[CMCM]

Well, I had numerous blood tests for celiac yet I never got a positive reading.  Same with my son. I eventually got a stool test from Enterolab which they claimed showed evidence of celiac reactions....I've never known how reliable Enterolab's test is as it has been disputed, BUT....I then did the gene test and learned I had my mother's celiac gene plus a gene from my father that is supposedly a gluten sensitivity related gene, so I knew I had the predisposition to celiac.  Eliminating gluten quickly eliminated all my lifelong symptoms.  The train of events was pretty much the same with my son.  His celiac first showed up as the dermatitis herpetiformis reaction.  He got the gene test, had the same celiac gene from me, and he gave up gluten.  The DH went away and has never come back, BUT....now if he gets some sort of cross contamination his reaction is fairly quick and he gets extremely sick.