Tested Negative, Bad Reactions To Even Traces Of Gluten

[GFkiwi]

Hi. To start, I just want to apologize in advance that this got as long as it did. I just wanted to give as much information as I could as a 'history'. For any/all who read it, thank you

So, even as a child I have had stomach issues. I would get bad diarrhea having certain kinds of bread, and I always had a sensitive stomach when I had my sandwiches for school lunches. As the years progressed, so too did the pains and intestinal issues I had. I've had more blood tests in my life for my stomach and the pains I suffered with than I'd like to recall, all starting when I was about twelve years old. Since then, I have had countless stomach x-rays, ultrasounds, and in April of this year I had my first CT-scan. I'm only 27 *g*

For many years I have struggled with my weight, particularly beginning at age 12 when all the pain got worse, and I started having all the worse intestinal troubles. That was, up until in April of last year, when my weight went from over 104kilos, and within 3 months dropped down to just below 80kilos. Since then, my weight has dropped to where it is now: 70kilos.

I have had a lot of blood and stool tests since September of last year (when the doctors finally decided my weight dropping WAS a concern, given I wasn't doing it intentionally -- and the Lord knows I've tried, many a time, and never could get lower than 1-2 kilos less than my heaviest weight).

Two of these blood tests have been 'anti TTG IgA' and 'IgA' tests. Both tests came back negative.

The first, 22 September 2008 -- after a -very- limited gluten diet:

Anti TTG IgA: 7 Units ( 0 - 20 )

IgA: 2.4 g/L ( 0.8 - 4.0 )

The second, 25 March 2009 -- after a 3 week gluten-challenge:

anti TTG IgA: 8 Units ( 0 - 20 )

IgA: 2.8 g/L ( 0.8 - 4.0 )

I guess my biggest question where these are concerned is this: is it typically normal for two separate tests of a negative result to come back different like they have? I realize it's not a huge difference to them, but it just struck me as odd, I guess, so I thought I would ask.

Now, outside of these negative test results....I have also had stool tests that have reported high levels of calprotectin (the first test was 67 ug/g, the second, a month later, was 87 ug/g), indicating intestinal inflammation. The CT scan they did in April confirmed this (as well as a cyst in/on my stomach) -- I'm seeing the specialist again in late June for the next step of action.

Not only that, but as the distance between times when I eat gluten increases, every time I have gluten accidentally I end up with diarrhea, severe intestinal pain (I've assumed from the intense inflammation it causes), as well as pain from my liver (indicated by upper middle stomach pain, as well as hellish shoulder/upper spine pain).

I've had Liver Functions tested when having a bad gluten attack, and the results were extremely high -- an ultrasound done at the same time revealed absolutely no inflammation or problems going on with either my liver or my gallbladder. I also had elevated WBC. Not having gluten, I had these tests done again....and they were all perfectly normal! Well, with the exception of my MCH and Hemoglobin, but considering the tiredness and all I've suffered from, it's likely I have a light touch of anemia. My tiredness has gone since I've been put on multi-vitamins.

Oh, I have also had ANA tests done that are abnormal also, with a result of Antinuclear Ab: POSITIVE A - ANA Titre: 160 ( < 80 ) - ANA Pattern : Fine Speckled.

I guess at this point the indication is for a gluten intolerance, but considering I've rarely, if ever, eaten gluten since I was a teenager....as every time I do it makes me sick....I'm wondering if I'm not just having false negative tests because of that? Alternatively, I guess I should just accept the blood work says I'm not celiacs.

I guess I'm just not sure what to do next. I want to talk to the specialist about all of my other blood work, particularly how my liver has abnormal results when I have gluten....but I'm not sure if I should or not. Any advice would be great. Thank you

And my apologies that this is SO darn long!

[MySuicidalTurtle]

Well, you need to be eating gluten everyday for a few weeks to have proper results. Even if the results are negative, you could try being 100% gluten-free. If you feel better, then stick with it, right?

[KerriKnoxRN]

The reason that the tests are coming back negative is not that you don't have Celiac, it's just that the tests aren't very good at picking up celiac.

Or, you could just say that you are 'Gluten Sensitive' since the docs won't label you as celiac. But do you REALLY want to keep putting yourself through all of those tests when you KNOW that you can't eat gluten and you have all of these other people on the boards saying the same thing?

And did you know that it takes 10 years for the average celiac to get a diagnosis after they start seeking medical attention for their problems??? That's an entire decade of suffering. So you are NOT the only one not to get a diagnosis, just be fortunate that you are aware of gluten sensitivity- many of those other people weren't and still sufferered for many years!

[Roda]

Since you still seem to be having problems you could have an EGD with biopsy done to check for celiac and other things. I agree with you that if you know if it makes you feel bad don't consume it regardless of what your celiac blood tests say. Hope you feel better soon.

[GFkiwi]

Well, you need to be eating gluten everyday for a few weeks to have proper results. Even if the results are negative, you could try being 100% gluten-free. If you feel better, then stick with it, right?

Ah, so my lack of it over the weeks/months beforehand could potentially have skewed the results then. Bugger

That's so true. I've been going gluten-free since after my CT scan...well, sort of unsuccessfully, as every so often I accidentally wind up having gluten. So I'm extra vigilant with lists of ingredients in food I buy, if it's pre-packaged. And yup, I do feel a lot better without it, so it's something to stick with!

Thanks for the reply, btw

[GFkiwi]

The reason that the tests are coming back negative is not that you don't have Celiac, it's just that the tests aren't very good at picking up celiac.

I have heard that about that particular test. I'm keen to get the genetic tests for celiacs and gluten sensitivity done, but wonder if I should since they were neg.

Or, you could just say that you are 'Gluten Sensitive' since the docs won't label you as celiac. But do you REALLY want to keep putting yourself through all of those tests when you KNOW that you can't eat gluten and you have all of these other people on the boards saying the same thing?

I think the answer to that is a definite 'Nope!' Accidental gluten attacks are awful, much less experiencing that 3 week challenge ever again....or for even longer!

And did you know that it takes 10 years for the average celiac to get a diagnosis after they start seeking medical attention for their problems??? That's an entire decade of suffering. So you are NOT the only one not to get a diagnosis, just be fortunate that you are aware of gluten sensitivity- many of those other people weren't and still sufferered for many years!

I hadn't heard that before, but I could sure believe it! I'd been telling my Mum since I was a kid bread, scones, biscuits, cakes...all of that and more made me really sore, but the doctors always said I was 'acting out' and would dose me with vitamin supplements Knowing all I do now, to be honest I wish I could go back in time and shake some sense into those doctors Minding, I suppose most who've suffered for years and who were continually told it was 'nothing' wish they could do that!

Thanks for your reply, btw

[GFkiwi]

Since you still seem to be having problems you could have an EGD with biopsy done to check for celiac and other things. I agree with you that if you know if it makes you feel bad don't consume it regardless of what your celiac blood tests say. Hope you feel better soon.

Thank you!

I think they will want to do an endoscopy, particularly if the cyst they found is inside my stomach and not on the outside. If they do, hopefully they'll check in there. I won't have to keep having gluten, will I? I'd sooner not, and just live with knowing the gluten affects me...diagnosis or no diagnosis Ya know, just because all that pain just doesn't sound appealing at all

My biggest concern isn't so much that I'm not celiacs (although those two negatives being different does confuse me a tad, but then my anxiety disorder makes me want answers for every iddy biddy little thing, oops!), is that the doctor I saw, and am seeing again in June, refused to even acknowledge gluten was giving me problems. Hopefully he might be more receptive this next time, but who knows.

Anyway, thank you for your reply!

[mushroom]

Getting a diagnosis of celiac is like pulling teeth with tweezers! Once in a while you might be successful if the tooth was ready to fall out anyway; otherwise, good luck! Celiac is always the last diagnosis on most doctors' minds, and yet they are happy to diagnose you with irritable bowel syndrome (now, just what exactly causes that irritability, doc?) or with fibromyalgia which no one can really define as a disease entity but which they label a bunch of symptoms with because they don't know what else to call it. Okay, so I'm biased, and a bit teed off, and perhaps overstating the case a bit. But from a frustrated patient's point of view, this is how it looks. There are so many of us on this forum who just have to accept that we know more about this than our doctors, and we educate ourselves on the web through medical sites and places like this forum, and do our best to then educate our doctors so others may benefit from our experience. End of rant.

From reading through the posts on this thread, it does not sound like the amount of gluten you have been eating would be sufficient to give a positive blood result. The blood test measures antibodies you manufacture in response to gluten, and without gluten--no antibodies. The same will probably hold true for the endoscopy; you have to have been eating gluten for 6-8 weeks for a valid test, otherwise healing begins to take place and precludes the diagnosis of intestinal damage. This is why so many of us do not have diagnoses--we could never contemplate going back and eating gluten for that long to get a positive diagnosis.

I don't think there was that much variability between your two test results. It was probably just a function of how much/little gluten you had been eating

Good luck with your cyst diagnosis, but if I were you I would not expect a celiac diagnosis .

[happygirl]

To clarify on your blood tests - only the tTG IgA is a Celiac test (which was negative.) The other - the IgA test, checks for IgA deficiency, and is not a specific Celiac test. If you are IgA deficient, then you have an increased risk of inaccurate results on the IgA tests (like the tTG IgA, the EMA IgA, etc). In addition, being IgA deficient is seen at higher incidences in those with Celiac.

The good news is that you are not IgA deficient, based on the lab work you presented.

The tTG IgA is a screening test, and can't necessarily rule Celiac "out', as there isn't one perfect Celiac blood test.