JoshB

Getting a blood test after that long gluten free is a pointless waste of money. Your doc might humor you and test for thyroid antibodies, but it's more likely that he'll ask to go back on gluten for a few months to do a proper celiac blood test first.

That's certainly suggestive of celiac disease. Unfortunately with only level 1 marsh changes it's not even close to diagnostic, and I think your location may raise the likely-hood of other the other potential problems. At the age of one I don't think that a blood test would be likely to be effective; his immune system wouldn't have developed to the point where he would start showing normal signs. However, at the age of four it's much more likely that he would test normally.

In light of that I would suggest:

#1 -- Redo the blood test, before starting a gluten free diet. If at all possible make sure they use "deamidated gliadin peptide", which is supposedly more effective with young children.

#2 -- If the test is positive, be glad you know what it is and start the gluten free diet.

#3 -- If the test is negative, start gluten free anyway -- he may still be too young for the blood test. Now you'll have to evaluate effectiveness for yourself.

Josh, the numbers currently quoted are one in 133, which also are out of date and grossly understate the extent of the problem.

I'm not sure why that would necessarily be an understatement. 1/133 comes from the red-cross study. You might get more if you take all people with wheat and gluten issues, not just celiacs. I think that the 1/133 study is probably an over estimation for actual celiac disease, though. Caucasians are strongly over-represented among blood donaters, and the also make up the majority of celiac cases, so it stands to reason that uncorrected studies based on our medical blood supply cannot be a good direct comparison for the whole of the US. It might be safe to suggest that 1/133 is a ballpark ratio for Caucasian Americans.

I don't think that being 70% gluten free is going to help you any. It might affect your tests. The official answer is that to get an accurate test you should be eating at least four pieces of bread for three months. The "real" answer is "nobody knows".

Are you sure that you don't have another autoimmune disease as well? Might be time for you to see a rheumy. I have both neuro (brand new symptoms- yayy! Not) and joint issues/arthritis for years that seem to be some kind of connective tissue disease. I was so excited going gluten free because I thought I might go into remission with that stuff...Sorry to say I have been gluten free since dec 2010 and no difference whatsoever! Arrgghhh!

I'm not sure at all, but I'm so tired of wasting money and time, and there are so many co-morbid conditions that kind of fit I don't even know where to start looking if I was going to. I went to the gastroenterologist mainly for this purpose; my assumption was that he would be experienced in dealing with celiac disease as a whole and know best how to proceed from there. What I actually got out of him was basically "Of course you have a bunch of associated problem, and no there's not much we can do. Good luck. No I can't tell you much about your joint pain/eye pain/memory problems/frequent sinus infections; I'm not a ortho/ eye/ neuro/ ear doctor."

It's just economics. Most docs when not given some incentive (a kick back from the drug company is very common for prescription-writing for instance) will do what they can to save you money.

In the worst case, let's say they decide to screen everyone. They'll get a positive about one every two hundred people. So at $250/person, that single diagnosis cost $50,000. Medically, there's a lot of important things that could get done for that money.

Of course, there are other risk factors and at some point they should be saying that it does make sense to test. A lot of doctors are still operating under what they were taught in med school, though, which means that they think the rate is maybe 1/3000 instead of 1/200. So they think there is very little chance of it, and that there are many other things which should be ruled at first. It's hard to remember it from this side of the fence, but usually that's the right call. We're the freakish exceptions that get to suffer for years so that fifty other people didn't have to unnecessarily waste money on testing.

Very, very unlikely but technically possible.

Still, what have you got to lose by trying the diet to see if it helps you? If you're on it for a month and feel better, well good for you.

If that fails you might go in for allergy testing, or try more extreme elimination diets. Maybe you're just allergic to something. If you could do two or three days on rice and cottage cheese and verify that you felt well, then you could add things back into your diet one-by-one until you find the culprit. This of course assumes that you are reacting to something you're eating.

Did you perhaps stop eating gluten before your tests? Your anti-gliadin results are somewhat low, but these tend to drop faster than other anti-bodies.

Your ttg-igg is highly suggestive of celiac disease. You should certainly talk with your doctor about it as there are a couple of other possibilities. But, yeah, you almost certainly have it. Very odd that they did ABS and that they did only the "igg" form of "ttg" rather than "iga" which is generally thought to be superior. Very strange lab.

I know three other people with celiac disease. Two of them have torn at least one rotator cuff. I've done this as well. Is it just a freakish coincidence, or is this a very common problem with celiac disease? Anyone else had this happen?

Well, I definitely haven't been as careful as possible. I normally eat whole foods that I've made myself, but I do eat out. I don't want to become a hermit.

My antibody levels have fallen to very low values, doesn't that indicate that I'm doing well enough on avoiding gluten?

I think I'm good on vitamins, though the lab screwed up the "B" tests and wanted to draw again, but I never did go back in. I'm assuming that since everything else is OK, that B is good too.

I'm about thirty and have probably had celiac disease for twenty five years, so that's not as bad as some, but apparently bad enough to accumulate issues. Everything I've read says that about three times more women are diagnosed than men, but that men tend to have much worse symptoms. I've also read that blood screening shows equal rates between men and women, so what I suspect is happening is that men are less tenacious in figuring out what is wrong; more prone to "tough it out". Probably the ones who do seek out help are the worst cases.

I guess I'm hoping that someone knows a wonder-drug, or revolutionary new treatment, or... anything. I'm a programmer, so fatigue, lack of memory, finger pain and eye pain are all very bad. I could hardly have picked a worse set of symptoms to make work difficult. I'd exchange those "minor" symptoms for the "major" stomach issues again in a minute if I could.

So, I finally got fed up with my GP and went to see a gastro. Going gluten free has made my stomach about 50% better, but hasn't really cleaned up all the other problems that seem to go along with it.

The gastro, of course, wants to do a endoscopy to evaluate how much damage remains and whether any further intervention is required, but he says that there's really nothing much to be done for all the other symptoms. He says particularly for neurological issues the time required for the body to heal is somewhere between "months" and "forever", and that all you can really do is eat properly and wait n' see.

I really dislike the side symptoms more than the "central" stomach symptoms, so I hope this isn't true even though it matches all the books and studies that I've read. Has anyone had success handling nerve and joint problems? IE you had tingling/static shock feelings/hot point pain/etc and you found some way to deal with it beyond "wait and see". Similarly if you had joint pain and/or eye pain was there anything that helped?

Probably the number one concern for me now is memory and concentration, and I don't even know where to start there. My vitamin levels seem to be back in reasonable ranges, and that's really all I know to do.

That's amazing and wonderful. Where I live, you can't even get a copy of your lab results from a lab unless your doctor writes on the rx that you can have a copy.

If you live in the US your certainly can. So many doctors have their heads up their butts that we actually made a federal law that requires that they give you any information pertinent to your own health upon request.

So... none of that is really part of a celiac panel, and you should probably discus those results with your doc.

Your DQ2 type doesn't rule out celiac disease, but it certainly doesn't diagnose it. About 30% of Americans have your DQ type.

It certainly sounds like celiac disease, but then a lot of things do. That's one of the reasons it's difficult to diagnose.

You should just be able to ask for a "celiac panel"; you really shouldn't have to know anything more. Some people also like to have their genetic "DQ" values determined, as this can help screen out celiac disease and also help you gauge risk for your family members -- If you have one DQ7.5 then your family is probably at less risk than if you have double DQ2.5 for instance. If you're willing to wait a couple months for processing, then 23andme.com can tell you much more for much less cost than your doc's lab as far as genetics goes.

Good luck on finding your answers. Don't go gluten free until your doc says that he's done with testing!

That is a very good book.

Also, get blood work done now before you go gluten free or you might regret it later.

Yes, but that doesn't mean much. There are many, many things that occur with celiac disease. It's a "great mimicker".

There are many things that can cause level I and II changes, but few that can cause level III. So it depends on how "bad" your biopsy was. If it was really level III changes -- which is normal for long term celiac disease, then the biopsy should be reasonably dependable. Though, it's apparently pretty easy to orient the sample the wrong direction on the microscope slide and make it look like you have flattened villi. That is much more likely, I think, than a true negative blood test and positive biopsy. I really don't think much of the biopsy, despite it for some reason being the "gold" standard. Maybe that's because it makes the doctors a lot of gold?

The blood test accuracy assumes that you have normal IGA serum levels, which they should have tested for.

Not a doctor, etc... read the studies yourself and write down what you need to discuss with your gastro. It's also certainly possible to have celiac disease + something else. There are unfortunately other digestive problems that seem to be more likely if you have celiac disease.

Yes there are varying degrees of both illness and sensitivity. Some people have all the classic symptoms and a half dozen of the weird ones. Some people only find out on accident and never realized they were having any stomach issues at all.

The only study I've ever seen on sensitivity found that people started reacting at somewhere between ten and fifty milli-grams of gluten. I personally have never noticed extreme reactions from cross-contamination. I try to eat out with friends and family, and yes -- mistakes happen. Hard to say if they happen too much, but I'm getting my antibodies tested every six months, and I figure that if I can keep them in the "normal" range that I'm doing pretty well.

There can be a gluten detox period. Gluten gets metabolized into several opiate like proteins, and if your body reacts to them as opiates then you'll be used to this, and may feel pretty badly for a few weeks while you readjust. I don't think that this would explain your rash, unless maybe stress was what really caused it.

You doc wants you to do a celiac blood test rather than a genetics test because even in the worst case for genetics results, it still does not mean you have celiac disease. It's more useful if you had close relatives, because if it might help you estimate risk for you family members.

There's certainly nothing stopping you from trying gluten free yourself, but I would think hard about it. If you do this you remove the opportunity to do a blood test or biopsy. Neither one will operate properly unless you have been eating gluten for two or three months. So, if you have continuing trouble you will be stuck in limbo wonder if you just aren't properly eating gluten free, or if you just haven't been on the diet long enough. Get the blood test now and handle those doubts.

That's very strange, but you know that you can just order the test yourself, right? There are a number of testing companies that will work with you rather than your doctor. The downside is that you won't have any insurance reimbursement -- cost is about $250.

I'm very ill the first day -- generally a very painful and upset stomach. The second I have an upset stomach, and possibly some other elevated symptoms. From the third day to about a week out I may or may not be just a little "off".

I felt much worse for more than a month after starting gluten free. It would not surprise me that you're not feeling great yet. Keep at it.

False positive biopsies are possible, but they would could involve some other fairly serious issue, and you ought to know if that was the case.

The more common cause of false positive is lab mistake; apparently it's really easy to flip the sample the wrong direction and hide the villi (Open Original Shared Link). Maybe that's what the doctor thinks happened? Or maybe your positive was only for minor changes that can be explained by several different conditions?

I'd be asking your doctor to explain why he thought you were negative despite the biopsy. There should probably be some answer other than "Oh... Well, the blood work wasn't positive."

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*Tissue Transglutam AB IGA, Result 44H

TtG-IgA is the normal go-to test they use. Ranges vary between labs, so it's hard to say how positive you are. This is a machine run test. They have a slide prepared with human tissue trans glutaminase then they drop your blood on and add a fluorescing dye that only sticks to reacting antibodies. The machine then reads how bright the fluorescence is and spits out a number based on that. You normally want to see "0", though and I think we can assume that "H" means "High". AB refers to abbreviated, which either means that your doc ordered the cheap version or they stopped at the cheap version because you already tested positive. Some labs are being a little more intelligent these days and are following up with TtG-IgG or total serum IgA only in the case that TtG-IgA didn't test positive. This was unnecessary in your case as you already tested positive in the more specific version.

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*Endomysial AB (IGA)Positive H

Sort of the same as above except that this test can be more sensitive. It's more expensive though because it involves manually preparing slides and staining samples and then counting "hits" with a microscope. Again you're positive.

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*Endomysial Titer 1:40 H

Here rather than counting fluorescing dots on a microscope, they add the dye to diluted samples of your blood and keep diluting until it stop reacting. They kept seeing a positive result until your blood had been diluted forty to one.

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So you're positive on blood tests, which are both more specific and more sensitive than biopsy. Assuming that the biopsy was done well, I think that probably means that you were just starting to develop issues. That's actually really good news as far as your health goes. The bad news, unfortunately, is that you need to eat gluten free from now on to make sure you don't actually start developing serious damage.

I'm not a doctor so take all that with a grain of salt, and while the TtG tests are very good, they are not absolutely perfect. More rarely (very, very rarely; this is almost certainly not you!), you can test positive because of auto-immune damage to your liver. So if your doctor has reason to suspect that you are dealing with something other than celiac disease then you should cooperate with him to make sure you're not dealing with some other issue.

Deaminated gliadin doesn't seems to be more specific or sensitive than ELISA TtG-IgA. It's just the new kid on the block. Though there is a little evidence that sometimes it will show a positive in young children that other tests would miss.

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