Negative Blood And Entero Lab Results?

[erin24]

Has anyone ever had negative results on their blood test and entero lab results but still find the gluten-free diet alleviated their symptoms?

I am asking this b/c:

Currently, my blood work came back negative and I am contimplating getting the Entereo Lab test. I am wondering if the stool test came back negative, just how discouraged I should be. I know everyone on this site says "If you feel better on the diet, who cares if you're not officially diagnosed". While I totally agree with that I just can't help but think maybe it's not celiac disease that is causing all of these symptoms but something else. I guess if I feel better who cares really what it is but it is nice to have some confirmation about what is going on inside my body.

I am just a little annoyed that I don't have any concrete answers. Ohh well, I think I will order the Entero lab test.

[e&j0304]

My daughter had negative blood tests despite lots of symptoms. She never had the biopsy. We started the diet and she was so much better but we too wanted more confirmation so we ordered tests from enterolab. They were positive for gluten sensitivity.

My son also had symptoms of celiac disease. He also had bloodwork that came back neg and he had the biopsy done which was also negative. We ordered enterolab tests for him and those were negative too. HOWEVER...he had had chronic diarrhea since birth and was not gaining weight. Since starting the gluten free diet, his diarrhea is gone and he is gaining weight.

I really don't have any answers for you, but that's our experience. Good luck finding your answers. I truely know how frustrating all of the uncertainty can be.

Shannon

[jnclelland]

  erin24 said:

Has anyone ever had negative results on their blood test and entero lab results but still find the gluten-free diet alleviated their symptoms?

Yup, this is what happened to me. I think I should have done Enterolab sooner; I did it after 8 months gluten-free and my results were negative (although high enough in the negative range to wonder if they might have been slightly positive 8 months earlier). However, my gene test was positive for one celiac gene and one non-celiac gluten sensitivity gene. So, while I still feel frustrated at not having a diagnosis, I'm still glad I had the test, because:

1) Since my gene test was positive, that gives me confidence that there's something real going on here, and it's not all in my head. Probably I just got lucky and figured out I needed to be gluten-free before I suffered really serious damage - and that's a GOOD thing!

2) The positive gene test gives me something concrete to tell the doctor if I ever decide that my kids need to be tested. (They aren't showing any troublesome symptoms now, but who knows what may happen down the road?)

Jeanne

[Clark Bent as Stupor-Man]

I was in the same position as you a month or 2 ago. I had a blood test done for gluten antibodies right at the start of the year, and that came back negative. There were 2 antibody levels that had been tested, and neither of them were even in the high part of the normal range. My primary doctor had dismissed celiac disease before the blood test (apparently she thought it didn't cause headaches) and reluctantly ordered the blood test in the first place.

I went on a strict gluten-free diet along with eliminating many other foods after the blood test. I felt some improvement the first couple weeks and was very up and down the next month. I ordered the enterolab test in mid-Feb. to confirm that I was on the right path with the whole gluten-free thing. My results came back positive for nearly everything including gluten and casein. The positive results enabled me to do things I had been hesitating on (ie. getting new pots and pans, etc.).

I don't think it's necessary to get a diagnosis, but I wanted one, mostly because I was too up and down to know for sure that I was on the right path. If you feel better even if your enterolab results come back negative, I would stay on the diet. Easier said then done, but feeling better should supercede any lab result.

- charlie

[Sandyo]

"I went on a strict gluten-free diet along with eliminating many other foods after the blood test. I felt some improvement the first couple weeks and was very up and down the next month. "

Thanks Charlie,

I'm glad to hear that someone else is having ups and downs. I also had a negative blood test but had felt better after going gluten free to 3 days before the blood test. Then I eat gluten for 3 days right before they drew the blood. This probably messed it up. So even though the blood test was negative, I've been gluten free for about 2 weeks now. But last week it was very up and down and I got discourged and eat some bread. Well, the next day I felt terrible. All my symptoms were back. I was starting to get relieve from Cronic Constipation for years and next next day....."c" was back! Incredible how fast it effected my BM. So that is enough for me.....but I had already ordered the enterolab test and am waiting for it's arrival. I'm going to stay gluten free for months and see if I level off.

Sandy

[Claire]

May I suggest that if you get the Enterolab test you get the one that includes non-celiac gluten sensitivity. Claire

[erin24]

Thanks for everyone's responses. It is good to know what everyone else has been through and the things you have tried since it seems that you are pretty much your own doctor with Celiac. Actaully, it seems that we are more like each other's doctors This message board has been more informative and helpful than all of my doctors combined. You guys will talk to me immediately and don't make me schedule appointments 2 months after I call. I guess I am a little bitter, huh?