Blood Test Negative...so I Guess It's Ncgs?

[kellysensei]

I completed an 8-week gluten challenge and had bloodwork done last week. The lab contacted me today and said my results were negative - no Celiac. However, my results from EnteroLab last month indicated a gluten sensitivity, and I know that gluten affects me. For example, by week seven of my gluten challenge, I was having terrible joint pain in my left hand and wrist; I could barely grip or pick anything up because it hurt so much. I stopped eating gluten five days ago, on Sunday, and by Tuesday night, the pain had completely disappeared. It's gotta be because of the (lack of) gluten....

 

So, do I consider myself as having non-Celiac gluten sensitivity? I plan to eat gluten-free from now on, though I won't go as far as getting new pots/pans or anything like that. 

[Cara in Boston]

I wouldn't automatically assume you do not have celiac, but since you are going gluten free anyway, it doesn't really matter.  

 

My blood tests were positive (I was tested because I had symptoms for years and my son tested positive) so I went gluten free.  In a short time period (2-3 weeks) my blood tests all came back negative.  (no big surprise, I was gluten free) but my new doctor wanted to re-test me so he recommended a 4-6 MONTH gluten challenge.  I gave up after about 2 months because all my symptoms came back.  At that time, my blood was still testing negative.  I did't really care . . . the positive reaction to the diet and my original positive blood tests were enough to convince me.

 

Just be aware that you might not have given the gluten challenge enough time (it is different for everyone).  If you have kids, keep an eye on them if they start showing signs.  Celiac is genetic.

[nvsmom]

I agree with Cara, in spite of negative tests you could still have celiac disease, or it could be NCGI, but treatment is still the same.   The only difference is that one attacks the villi, and occassionally the skin, and the other does not, but deficiencies, fatigue, pain, etc happen in both.

 

I agree about kids too. If you have some, and are planning on maintaining a gluten-free house, you should get them tested now and then retest every few years if negative (and not gluten-free), all the while keeping an eye open for symptoms. my kids tested negative but some had symptoms, so considering they have a celiac mom, I made them gluten-free now rather than let their health deteriorate while waiting for a more definitive diagnosis.. KWIM?

 

Good luck with the diet.  

[GretaJane]

I completed an 8-week gluten challenge and had bloodwork done last week. The lab contacted me today and said my results were negative - no Celiac. However, my results from EnteroLab last month indicated a gluten sensitivity, and I know that gluten affects me. For example, by week seven of my gluten challenge, I was having terrible joint pain in my left hand and wrist; I could barely grip or pick anything up because it hurt so much. I stopped eating gluten five days ago, on Sunday, and by Tuesday night, the pain had completely disappeared. It's gotta be because of the (lack of) gluten....

So, do I consider myself as having non-Celiac gluten sensitivity? I plan to eat gluten-free from now on, though I won't go as far as getting new pots/pans or anything like that.

The blood tests and labs are not always perfect. You could get a biopsy if you want to see if there is damage. I have heard of many people testing neg on bloods and positive on biopsy.

[kellysensei]

My kids have already been tested - negative. I'm not making my family go gluten-free, just me, although I do all the cooking at home, so home meals will be gluten-free unless I heat up a frozen pizza or some mac n' cheese for them. 

 

I'd rather not do a biopsy at this point. Seems like every time a doctor touches me in the past couple years, something goes wrong. I know I have at least a gluten sensitivity and accept the fact that I need to be gluten-free.