Blood Results Back... Confused

[ajeffer30]

Hi, this is my first post here; however I have been lurking for the last several months. I feel very fatigued all the time, I'm anxious, my hair keeps thinning, I get stomach cramps after eating and usually end up in the bathroom, vitamin D & B12 deficient, bloating, excessive weight gain, etc. My doctor told me the Celiac blood test is very accurate and said I was negative and no further testing is necessary. I asked her about the scope and she told me it was not necessary. The doctor also tested my Vitamin D level since last time it was 12 and now it's at 30 which she said is great. My B12 is a little low and I have a positive ANA Titer. Can anyone give me any feedback or explanation... I really don't understand any of this. She scheduled me with a Rheum. Specialist for September 28th and sent me home with a muscle relaxer. I asked her why I am so bloated and keep gaining and she smiled and said... well once you get a certain age you just need to exercise and watch your diet. I don't eat much... actually I eat less than I used to and the weight keeps on creeping up and up. At this point, I am very frustrated and I don't understand what is going on. I did follow a Gluten Free diet for a week a couple months ago to see how I felt... while I didn't feel different with the muslce and joint pain, my tummy issues improved dramatically and I lost 7 lbs without watching what I was eating other than avoiding gluten. I really assumed this test would come back positive. Sigh... now what?

Celiac Disease AB

IGA Serum 174 MG/DL

Reference range: 81 to 463

TISS Transglab AB IGA <3

Explanation:

<5 Negative

5-8 Equivocal

>8 Positive

GLIADIN Antibody IGA <3

Explanation:

<11 Negative

11-17 Equivocal

>17 Positive

Here is my vitamin level info:

Vitamin B12 193L pg/ml Ref Range- 211-911

D2 Vitamin D25 Hydroxy <4

D3 Vitamin D25 Hydroxy 30

Vitamin D25 Hydroxy 30

Ref Range: 30 to 100

Notes: 25-OHD3 indicates both endogenous production and supplementation. 25-OHD2 is an indicator of exogenous sources, suchas diet or supplementation. Therapy is based on measurement of Total 25-OHD, with levels <20 ng/ml indicative of Vitamin D deficiency, while levels between 20ng/ml and 30 ng/ml suggest insufficiency. Optimal levels are > or = 30 ng/ml

ANA Titer 1:640

[ravenwoodglass]

Were you eating gluten free when the blood tests were done? That insures a false negative. Even on a full gluten diet false negative rates are fairly high. That the diet was helping your symptoms is IMHO the best test there is. If your not going to have a biopsy go ahead and keep on the diet. You may find that eventually your fatigue and arthritic symptoms improve also.

[Skylark]

And even if you're eating gluten, there is an estimated 20% false negative rate on the blood tests (which your doctor apparently doesn't know).

If you felt a lot better gluten-free you're clearly intolerant. It may be that you have some malabsorption causing the vitamin deficiencies as well, as we see a bunch of folks with low D and B12 around here. The positive ANA titer means you have some autoimmunity, which would predispose you to celiac or gluten intolerance. You also may find that after a few months gluten-free some of your other health problems go away.

[sb2178]

Yeah, joint pain takes longer to resolve than GI stuff for most people. Took me maybe 5-8 weeks, and still get occasional bouts (but mild!). I'd go gluten free and keep the specialist appointment just to make sure you don't also have a concurrent AI illness since they tend to cluster.

Test results are not perfectly reliable. I also think there is a progression of the disease so in addition to a false negative, you may also be in the process of slowing building up the antibodies in your intestines. It then takes more time for them to show up in your blood. Some people do show up with positive biopsies, but if you have a positive dietary response and your deficiencies resolve, I would skip it. Unless you need the paper to stick to the diet.

[nikki-uk]

As everyone else has already suggested, it might be worth just trying the diet.

A negative blood test doesn't necessarily mean you don't have celiac disease. My husband's coeliac blood screen was negative but biopsies went on to prove he did in fact have it.

Good luck

[gigi2]

Hello confused...that describes me too. I have a son with bx. dx. celiac for three years.(hes 33) I have been seeking medical help to treat numbness and tingling in feet and hands as well as depression. Started with primary, moved to rheum. and neuro.psyc., when I mentioned celiac they all discounted it. When I saw a gi doc she took me serious and said that the tests they use for screening are way diferent from a regular dr. I am waiting on results for a maybe low b12 (331). I feel I am more likely to have celiac than ms or worse. Had normal mri back, head other tests. A gi doc may take you more serious..just a thought..My problems with docs has been over 4yrs.