JoshB

Raven, I agree with you that for many of the blood tests in use, false positives are extremely rare. So rare in fact that I suspect those cases are just beginning and haven't yet developed intestinal changes. That's not the "false positive" I'm referring to, but rather anyone who decides they were "positive" when truly they were not.

The consequences of having and not knowing are devastating. But there is a significant cost both socially and economically to eating gluten free. Doing this unnecessarily (or even necessarily) will strain your relationships and finances for the rest of your life.

Irish, I have little doubt at this point that you will decide to "take offense" with anyone who does not agree with your line of thinking.

Now, first, chill out. Second, go back and read the thread again. I was here giving honest --and I think good-- advice to someone who asked for it. You're the one picking a fight. You "took offense" and "exception" before you were even involved in the thread, and now you're trying to attack my arguments by attacking my character, making it look like I've set out to antagonize you.

If you would like to change my mind, or even just post an alternative viewpoint for discussion, then please make a well reasoned argument backed by dependable evidence.

Anecdotal evidence is your uncle telling you how dangerous the ocean is because he was bit by a shark when he was ten. Scientific evidence says that it's not very dangerous because only one out of every twelve million beach-goers gets bitten. One of these forms of evidence is considerably more valuable than the other.

The manufacturer of the test kit seems to think that the specificity is above 98%. Usually "A" type antibodies seem to be higher, so that's a little odd. Did they do a "Total IgA" test as well?

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I would think this is a positive result. If there's any question left in your mind, then now is the time to get a biopsy.

I've got a very good idea of what IGA deficiency is, Irish. It means that your "A" type antibody response is abnormal, and that the IgA-anti-TtG test will be invalid. Fortunately this is not a "false negative" as a celiac panel should always include a total IgA check, which will flag this issue. And, in any case, only about 3% of celiac disease patients have low "IgA".

In a research setting, where the clinician actually knows what they are doing, and where they know there is accountability for their work, the sensitivity of ELISA IgA-TtG, TgG-TtG, and EMA are all upwards of 95%. In the "real" world the sensitivity of each of those is usually ~90% or even less depending on lab. This is part of why a celiac panel includes redundant tests. I think it would be a good idea to get retested at another lab if there was very strong reason to expect celiac disease, but negative blood work.

It's very easy to think of the cost of a false negative. Remember that a false positive has a cost too. Especially for a child.

I'm not sure that Entero is quackery. The ideas behind the tests do seem to make sense. You find antibodies in the stool, it seems likely that your body is pissed off at something in there. But since this is all being immediately expelled from the body, do the antibodies really matter? Is there opportunity for a feedback loop to develop like in celiac disease? Nobody knows, and it doesn't seem like we're likely to find out, because they seem more interested in getting every customer than can than they are in publishing their results and having other organizations validate their methods.

As for the blood tests failing, I really think they should be quite reliable. Study after study shows how good they are. The trouble with taking anecdotal complaints against a test like this is that there's a selection bias. The only people who are going to speak up are the freak cases that the blood test didn't work for. You have a lab failure or mix-up, or just something very strange about the person taking the test and it doesn't work out. Well, those are the people you're going to hear from when you ask about the blood test. Not the 1,000 other people it worked fine for.

With one DQ2.5 I think her odds are somewhere around 8% of developing it in her lifetime. That number seems to vary a bit from study to study. Genes don't appear to be enough to cause it. Usually there's some trauma: an illness or injury, or even extreme stress can kick things off.

Actually, blood antibodies are generally much more sensitive and specific than biopsy. Though they don't always run anti-gliadin now, like in your Enterolabs test, because it's not specific to celiac disease. There are several other, very good tests though. You can just ask for a "Celiac Panel".

I would absolutely look into it for yourself. There's a big crossover between Hashi's and Celiac. There are even a couple studies showing thyroid improvement on Gluten Free for people who do not have celiac disease. I don't think the "why" part of it is understood yet.

Tracy, children usually heal in a few months. Adults, though, take anywhere from a year to "forever". Or at least that's what used to be thought; my GI tells me that they have excellent success with prednisone in those cases. This is why they'll want to do an endoscopy now, and then a followup in a year or two.

You're lucky to be symptom free, but you really should be just as careful. The upset stomach is bad, but the real worry is bone loss and cancer.

I was trying l-glutamine for a bit to try to speed things up. Some people swear by it, and hospitals use it to help you recover from intestinal surgery. I didn't really notice a difference, but then I'm not sure I would have even if it was working well. We really need studies in this area.

She has one very risky gene [DQ2.5] for celiac disease, but it should not be taken as a diagnosis; about 13% of the population in the US has this.

As for the other results... who really knows? The tests that Enterolabs has developed seem reasonable on the surface, but they have not published their work. It's not been peer reviewed or duplicated. They are the sole backers of their tests.

They are banned in a number of states, and your insurance isn't going to pay for what they do. There are reasons for this.

Frankly I don't think it's possible, and you are likely endangering your relationship with your workmates by worrying about it. If you're concerned about crumbs on the door, then stand second in line and don't open it yourself, or wash your hands after the meeting.

Maybe you should stop in and see the doc, or take a vacation day and rest up. Hard to remember it sometimes, but people do get sick without the assistance of gluten!

Did you get a copy of your lab-work? That might be helpful.

40% or so of celiac cases involve no intestinal discomfort that the patient noticed. This is generally referred to as "silent celiac disease". Usually in these cases it's discovered because of the "minor" manifestations of the disease or because a family member was diagnosed. Symptoms and severity differ a whole lot from person to person.

It's fine. Almost no one uses gluten or even wheat starch as a binder now, so there's nothing to cross contaminate with. Besides if any manufacturing facility is going to have good protocols against cross contamination on a processing line, it's a pharmaceutical plant.

That is a good point. There's a lot of areas where the current scientific answer is "We followed for two years and this is what we saw", but the real answer is "In the long run, who knows?"

For many questions we'll never have an answer, just because finding that answer would be incredibly cruel or expensive. About the only reason we know of so many risk increases is because of the Korean War study where they were able to look at frozen blood samples from forty years ago and determine who had celiac disease at the time and what happened to them over the following decades. How else would you do long term studies? You can't exactly figure out that someone has celiac disease and not tell them just so you can see how it progresses. And it's hard to pay for studies on symptom improvement.

I've asked this myself. Everything I've read says that neuro issues that come from actual damage don't usually get much better.

Stress and pain, however, do have a major effect on your nerves. Also, there are some common vitamin deficiencies that can do horrible things to the chemical transmitters your nerves use to send messages. Fatigue, of course, has an enormous effect on our mental sharpness. All of that should correct itself as you get better. So, I guess it depends on you and your situation.

It sounds like you and your son are allergic to wheat rather than gluten intolerant. I think you could test that without eating wheat for a long time, just get an allergist to do a prick test.

If your reactions are that quick and clear, I'm not really sure what a doctor or a diagnosis is going to do for you. You'll have to eat wheat for several months to test for celiac antibodies, and frankly I don't think you'll be positive. What difference does it make to you if the rash is allergic or auto-immune? Either way you're not going to want to eat wheat. I guess it would be nice to figure out if anti-histamines help you.

I'm pretty certain that they don't really knock you out for tests, but they do give you a sedative that is an amnesiac. I don't remember my colonoscopy or either of my endoscopies. Now it's time for another colonoscopy 10 years later.

richard

It depends on your doc and possibly what you ask for. My GI has finally talked me into one, as some issues aren't resolving. I'm supposed to go in a few days here, and he says I've got my choice between full sedation, a little something for the pain, or nothing at all.

The "IGA" you're referring to is simply an indicator that your "A" type antibodies are in working order -- the other tests can report false negatives if you're low here. It has no bearing on whether you are celiac positive. It's the other numbers on your test that actually count.

If you have positive blood work, you almost certainly have celiac disease. In fact, the certainty is much greater than with the endoscopy. The endoscopy at this point may give you some indication of how bad off you are, but even a negative endoscopy should be taken to mean that they either missed your damage or that you caught things early. Studies show that a follow up endoscopy after a negative scope and positive blood work will find damage on the scope 95% of the time one year later if the patient continues on a normal diet.

With that in mind, I would not keep eating gluten just to emphasize damage on the scope. Every day you are losing irreplaceable bone mass, and may be doing some of the other associated sorts of damage. Unless your scope is months away, it's very unlikely that any diet change you make now will visibly effect your results. As an adult with celiac disease, if you've progressed to level III villi changes, you have more than a year of healing ahead of you.

Im sorry. I haven't a clue. I've been on a celiac diet for a long time now without ever taking the test until recently.

I found out I was pregnant but when I told my OBGYN that I had celiac they said they wouldnt see me till I had test that confirmed it. So, I went to my doc and he ordered a blood test for me. Only, it came back negative. When I asked if my non-gluten diet could have affected it they said no.

So, now I'm at a lost. My mom, sister and I all feel better on a gluten-free diet. W/o it we get a rash, abdominal pain, and fevers. I also have anemia.

I dont want to go back on a gluten diet and I'm worried that my OBGYN wont take me serious now and give me medicine or something that could harm the baby.

I don't know what to think or to tell you. Sorry.

As long as you're eating diversely and maybe taking a mutli-vitamin, being gluten free should not harm your baby. It certainly seems unwise to do a gluten challenge while pregnant, and your diet would absolutely effect the blood test. Frankly, your doctor saying otherwise is a very good sign that you should not take his advice for anything having to do with celiac disease. I would consider finding another doctor in general, as he is obviously willing to advise you in areas where he has no knowledge.

Sorry Kim, that's a positive result. On the plus side now you know, and you should start feeling a lot better.

Your GI may want to do an endoscopy to determine the severity of damage. You might want to do that depending on your plans for the future and your insurance situation. You'll have to eat gluten free from now on no matter what, but a GI may compare an endoscopy now with one from a year from now to make sure that you're improving. Some people need a little help from steroids, and in a tiny number of cases a more serious version of celiac disease develops, so they like to watch for that.

You need to go get your vitamins checked by blood test. Critically, D, Calcium, and B 6 and 12. If you have had symptoms for more than a year or two, and/or have any risks for osteoporosis, then you should probably also have a dexa scan. It might be a good idea to just assume you're low on Calcium and D until you get the scan, and start taking supplements. Blood levels can be pretty high even when your bones are being depleted.

There's a lot of factors here. It's possible to have a negative blood test, but know that it could be a false negative. There is a percentage of people that cannot make type "A" antibodies. A celiac panel should always include a "Total serum" check to determine if this is the case for you. Also lab mistakes can happen and old test kits or kits that have been improperly stored can fail. In strongly suspected cases a negative blood test might be rechecked at another lab.

All that said, I think every bit of research clearly shows that the endoscopy is much less effective than the blood test. The endoscopy has frequent false negatives, because early damage can be hard to pin down, and because damage may be spotty and can be missed with sampling. False positives occur when a tech miss-orients a sample or confuses damage from another digestive condition for celiac related damage.

I've been completely unable to find a LabCorp DQ test sample, but I did find one for Quest:

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So it seems that if you're using Quest you can determine your DQ type, not just whether it is 2 or 8.

I think it's worth noting that it doesn't just tell you, however. You have to look up what your "A" and "B" values mean for yourself. I'm certain that my GP would not have known what to make of this, and that if it came back and didn't say "DQ2" but did have sub-types for DQ7.5 that he would have missed it and said it was impossible for me to have celiac disease.

So my take-away would be to use Quest for now if you have the option, and to be sure to get a copy of the test for yourself.

I'm pretty disturbed that these tests aren't better. I'm thinking that if I asked someone from a testing-company about it they'd say "Yeah, but it's pretty good. This is going to be correct for 97% of cases!" -- That, frankly, is nowhere near good enough. Three percent of the celiac-positive people taking a DQ test that doesn't report your sub-types are going to be told "Nope. Not you", essentially sentencing them to die by lymphoma.

Antibody levels can take months to fall. A couple weeks probably didn't have a significant effect.

If you have access to a microwave and a little spare change, the "Amy's Kitchen" brand of frozen lunches are all very good. My only problem with them is that #1 -- they are pretty low calorie, and I usually want a snack as well. And, #2 -- some of them are a bit high in fat.

Just saw this Cougie. I wasn't saying that you were off topic, but that I was. I posted another question and moved it to a separate thread, because it really didn't have much to do with the original topic.

Writing lacks so much compared with a conversation. I really think we need a whole other set of punctuation to indicate mood, sarcasm, agreement, doubtfulness. All sort of things that tone of voice and expression would normally carry.

Can't speak to the female issues, but B12 deficiency is classic celiac. If it is celiac disease, you will likely have a very hard time correcting that with supplements until your intestines are healed. If you are that bad off, I would suggest immediately getting blood drawn. Then, that very day, go gluten free. You can wait for confirmation from the blood tests, but if it is celiac disease and you're at that point you are likely losing nerve and bone tissue every day; you'll have a hard time regaining what you've lost, so don't let it get any worse.

OK, so Labcorp does not seem as useful as one might hope. Better than I feared though, as there is some suggestion that there are tests which won't tell you if you're 2.2, only 2.5. Knowing only "2" is not as useful as 2.5/2.2, but at least it's better than not spotting 2.2 at all. I'd be really interested in hearing from anyone about what a "negative" result looks like from them. Also, has anyone ever gotten a DQ7.5 result? It seems pretty useless if they don't identify 7.5

It can take a very long time.

I'm sure that someone will be along to say otherwise, but the blood test should be pretty accurate. Your issue is very likely something else. You can certainly keep gluten free to see if it helps, but I wouldn't give up looking into alternatives either.