Test Results Back, More Confused!

[julirama723]

OK, I have been reading through all of the "test result" topics that I can find, simply searching for something to compare my results to. I am more confused now, having the results in my hand, than I was before. I'm not sure the doc even ordered the right tests. He certainly didn't order EVERYTHING I needed.

Sigh.

Here's what I have:

Celiac Disease Antibody, Expanded Panel

Reticulin IgA, IFA

<1:5 (<1:5 Antibody not detected, > or = 1:5 Antibody detected)

"IgA reticulin antibody is found in untreated gluten-sensitive enteropathy (60-100%) and dermatitis herpetiformis with celiac mucosal atrophy (90%). IgA reticulin antibody is more specific that IgG reticulin antibody for celiac disease."

Celiac Disease Antibody, Expanded Panel

Endomysial IgA Antibody, IFA

<1:5 (<1:5 Antibody not detected, > or = 1:5 Antibody detected)

"IgA endomysial antibody is present in approximately 70% of dermatitis herpetiformis patients and nearly 100% of celiac disease patients not on gluten-free diets. Decreasing antibody titers reflect adherence to a gluten-free diet in DH and celiac disease patients."

Celiac Disease Antibody, Expanded Panel

Gliadin Peptide IgG/IgA, ELISA

Gliadin Peptide IgG: 1 (<20 units Antibody not detected)

Gliadin Peptide IgA: 1 (<20 units Antibody not detected)

"Gliadin-reactive antibodies from patients with celiac disease recognize a limited number of specific gliadin epitopes, and show enhanced binding to gliadin that has been deamidated by the enzymatic action of transglutaminase. Assays measuring antibodies to deamidated gliadin peptides expressing celiac-specific epitopes are thus more accurate than conventional gliadin antibody assays for diagnosing celiac disease. Gliadin peptide IgA levels decrease in conjunction with adherence to a gluten-free diet."

Celiac Disease Antibody, Expanded Panel

Reticulin IgG, IFA

<1:40 (<1:40 Antibody not detected, > or = 1:40 Antibody detected)

"Reticulin antibody is found in untreated gluten-sensitive enteropathic children (70%) and adults (30%), DH (25%) and small bowel inflammation (20%). The antibody titer may fall after removal of wheat gluten from the diet. IfF reticulin antibody is less specific for gluten-sensitivity than IgA reticulin antibody."

Celiac Disease Antibody, Expanded Panel

Transglutaminase IgA Ab, ELISA

2 (<20 units Antibody not detected, > or = 20 units Antibody detected)

"Detection of transglutaminase IgA is a sensitive (>90%) and specific (>95%) marker for celiac disease and DH, the two major forms of gluten sensitive enteropathy. Transglutaminase has been identified as the autoantigen recognized by endomysial antibodies. Transglutaminase IgA antibodies gradually disappear from the circulation with adherence to a gluten-free diet."

"Profile Note:

Test Performed by: Focus Diagnostics, Inc."

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I don't see all of the same tests that others have received. They didn't test iron, thyroid, or any of those other indicators. Of course, I don't know exactly the specific tests I'm missing.

I was eating gluten at the time of the test, but not much, or at least, not the 4 pieces of bread-per-day-for-3-months amount that's been suggested. (I was probably eating the equivalent to 1 piece of bread per day, and that was enough for me!)

I'm still sticking with gluten-free, I'm just wondering how to interpret my results and wondering what SHOULD have been done. Do I even pursue this whole diagnosis thing with doctors? The closest GI doctor (listed in the phone book, who knows how good he is, or even if he's familiar with celiac) is almost 2 hours away. I know not every doc knows everything about celiac, but I'm wondering if this local guy is so far off that he's not even worth going to.

(The idiotic nurse who read my results, the same who also said things like "'endo-sy-mial IgA', 'gil-lad-in peptide', [i guess he's the love child of Gilad of Alladin?] and 'trans-glu-ma-tase'" basically told me "Your results are negative so you're not celiac. Have a nice day." I guess not knowing about false negatives (and not giving a flip about my symptoms) they would seem like great results.

So, I sit here after being glutened, on day 4 with diarrhea; wearing gloves because my fingers freeze when I type (hello Raynaud's!); with my history of Graves Disease; thinking of my celiac mother who almost died this summer from being undiagnosed and untreated; yep my negative bloodwork really makes me feel great!

I guess I just hoped they were reading the results incorrectly and that I'd have an answer.

[Mother of Jibril]

Did they also test your total IgA? If it's really low, you'll get negative results on the blood test no matter how much gluten you eat.

At this point you could pursue genetic testing. If you don't have the DQ2 or DQ8 gene your chances of having celiac disease are very small. Or just stay off gluten... it can cause all kinds of autoimmune problems.

Testing your thyroid (TSH plus antibodies) or iron (hemoglobin, ferritin, TIBC) is a separate issue. Did you ask your doctor specifically for those tests?

[MaryJones2]

I think a positive response to the diet is the most accurate test. If your mother is diagnosed celiac and your health improves on a gluten-free diet then I would assume you are at least gluten intolerant if not celiac.

[TracyB]

Hi Julie,

I don't have my blood results with me, but I believe they did a total IGA on mine. It just said I was IGA sufficient - I don't think they gave me an actual reading. You do need a bit of interpretation on yours - call the lab and perhaps they will have somebody there to help you.

I am hoping to go on to have a biopsy - even if it's just to have a look to see what's going on in there. I'm hoping it's nothing and I will just go back to living with IBS as I always have - perhaps a colonoscopy might be in order too. Will your doctor send you on for more testing such as a biopsy? They certainly can based on symptoms and family history.

I understand the blood tests are very sensitive now and will detect celiac disease in almost all cases. There are exceptions, but I think they are rare.

I would much rather NOT have celiac - I can't even imagine how hard it must be to follow a celiac diet AND a non-celiac diet in one household - and also because then my kids are free from the risk of celiac (which is why I ended up being tested in the first place, after a lifetime (since 3 years old) of symptoms.)

I am lactose intolerant and although I don't like milk and don't drink it, I will have an occasional yogurt or cheese. My Dr. advised I take it out of my diet completely. Absolutely no dairy. That's not a huge issue for me because I'm not a fan - although cheese is something I DO like and I cook with it every now and then. I also don't seem to react as badly to cheese or yogurt as I do milk, cream, etc.

Good luck and hopefully somebody in here will know what your results mean.

TracyB

[ShayFL]

Lab tests do not rule out gluten intolerance though. The diet IS the "gold standard".

[TracyB]

Lab tests do not rule out gluten intolerance though. The diet IS the "gold standard".

That's absolutely correct - and after the biopsy, I intend to go that route - at least for a road test and see if there are marked improvements!

TracyB

[julirama723]

Thanks for your replies!

I was really confused by the tests since my "numbers" (not only my actual numbers but the interpretive criteria as well) looked completely different than any other test numbers I'd read about on this forum.

Mother of Jibril--They did not test my total IgA, and it does look like that would have made a difference in the testing. I did not ask them to specifically test for iron and thyroid, but I asked them to "please test for EVERYTHING related to celiac, ALL tests that would indicate celiac as a possibility." I guess it's mainly my fault since I didn't know specifically what to ask for at the time.

So, from these tests, it basically looks like perhaps body doesn't like gluten, but I have no serious intestinal damage (yet)? Basically I feel like a big dolt whenever I post anything because I feel like I hardly know anything about gluten intolerance or celiac disease. The food thing is easy for me (knowing what to eat and what not to eat) but actually understanding celiac and the testing and diagnosis of it seems confusing.

I will just tell my doc that I have a gluten intolerance and that's that?

Tracy--I'm starting to think I also have some problems with dairy. (I know that you've mentioned this to me before Shay, and so I've started to observe how I feel if I eat dairy.) I've not noticed problems in the past. I will say that for the past week or so, I've noticed that after I've eaten (if the meal contains dairy) I'll feel slightly nauseous and almost like my food just sits in my stomach and isn't digesting.

Jane and Shay--The diet has yielded positive results, both literally and figuratively! I feel so much better than I have in a long time.

I was talking with my fiance about all this the other night. He asked me "How did you not know something was wrong before?" I honestly thought it was normal to have abdominal bloating and gas after every meal. I thought I was just a pig or something (even though I'd eat "normal" sized meals), and that's why I'd need to wear pants a size larger than normal to accommodate my expanding post-meal gut. I honestly thought that stuff was normal or that it was no big deal. It wasn't until my mom was diagnosed that I really put 2 and 2 together that I might also have a problem with gluten.