Igg Positives Only

[organicmama]

A couple of weeks ago, I got the results of testing back that I requested from the doctor. They can't interpret the results at all and are largely unfamiliar with the tests. I duplicated what our pediatrician has ordered for our children, who have all come back with similar results.

Essentially, I show positive IGG results in gliadin antibodies, wheat antibodies, and my casein antibodies are above the range they can measure. I did not show results in the high range for any IGA antibodies or TTG. Total IGA was not measured.

I have had undiagnosed autoimmune and neurological issues for years. I began a Gluten-free Casein-free diet and have mentally felt much better with less fatigue, but still feel I have a long way to go. I have no real GI symptoms nor do my children.

Our ped recommends that we eliminate for 6 months and reintroduce. There is no obvious immediate reaction when we eat offending foods. Is their plan really appropriate, and can I rule out celiac? After a year of elimination, our children all tested normal, but now all test in the abnormal range again, less than two years later. They did not grow out of it as the peds thought they would.

My concern is that we have celiac or a lifelong sensitivity issue and risk permanent damage if we reintroduce later.

[mushroom]

Hello, and welcome.

What I am understanding from your post is that your pediatrician ordered anti-gliadin (AGA) IGA and IGG tests as well as tTG IGA an IGGfor your children, who had positive AGA IGG results only. You then had your doctor order these tests for you and you had similar results.

The following are the tests that are considered to make up the full celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Normally the IgG versions are used if the patient tests low in total serum IgA, meaning they do not make normal amounts of antibodies. Doctors love to do the tTG test, but the EMA is really more specific for celiac and the DGP, the newest test, is considered to be the most specific and is easier to run than the EMA. I would think it would be important to get full panels run for all of you to get a better idea of what is going on and to find out if you are low in total serum IgA.

You do not mention anything about a diagnosis from your doctor or your children's pediatrician. Are you eating gluten free on your doctor's advice? And no, I would not think you can rule out celiac based on those results for any of you. The fact that your test results are all identical is suspicious. I am curious as to why your children were tested if they have no symptoms? Or is it that you all do have symptoms but the reactions are delayed? This is quite confusing to me and I would not be happy personally to let the matter rest there. You say your doctor is not celiac knowledgeable and it is unclear to me what testing he did which showed "wheat antibodies" and "casein antibodies" - were these ELISA tests? Can you actually print out what your test results say or do you not have a copy of them?

You are correct that going gluten free and then reintroducing it six months later is a risky proposition. Much better to keep eating gluten now and get the full testing done. You can be negative on tTG and still have celiac disease. (Sshhh, don't tell the doctor that )

[organicmama]

My children were all tested because of diaper rashes as infants and toddlers that only went away when they potty trained (they are all 4 and under). They were retested after a year or more of elimination, so naturally, all tested in the normal range since we eliminated the offenders. I was told to expect that they were permanently gone.

One of my 3 year-olds has eczema now, so I had her retested. With her wheat IGG results being much higher than they ever were, I had all retested and sure enough, all came back with positive results for Anti-Gliadin, Wheat, and Casein IgG tests only. I've wondered myself lately if I had food issues because of chronic fatigue unlike anything I've ever had, which caused me to ask for testing. I honestly had no idea sensitivities could cause neurological or autoimmune symptoms until after I got the results.

The pediatrician told us to go gluten free and casein free (although the casein is mild for the children) for all four children and similarly advised me on my test results given that my regular doc could not interpret them. The pediatrician has told me though, that since everyone did not show high TTG results, that no one is celiac, so to reintroduce later and see how it goes.

Here are my results from Quest Diagnostics:

Anti-Gliadin (AGA) IgA - 5 (range shows normal is <11)

Anti-Gliadin (AGA) IgG - 21 (range shows normal is <11)

Anti-Endomysial (EMA) IgA - never ordered

Anti-Tissue Transglutaminase (tTG) IgA - never ordered

Deamidated Gliadin Peptide (DGP) IgA and IgG - never ordered

Total Serum IgA - never ordered

Additional test results from Quest Diagnostics:

Anti-Tissue Transglutaminase (tTG) IgG - <3 (range shows normal is <7)

Wheat GF4, IGG - 15.1 (range shows normal <2)

Milk Cow IGG4 - >30 (range shows normal < 0.15)

[Skylark]

Wow, that's a really tough call.

For you, I'd say stay away from gluten and casein. You're feeling better, and people with neuro autoimmunity may only ever show anti-gliadin. The celiac panel is for GI autoimmunity.

For the kids... sheesh. What a tough choice. The IgG results are pretty much allergy results, though allergy/intolerance can make people feel pretty rotten. If they're still eating wheat, see if you can get them the newer deamidated gliadin peptide (DGP) test. It's more sensitive than tTG and specific for celiac. It's done as both IgG and IgA and I believe I read the IgG is more sensitive. Hopefully someone else can confirm. They should be eating a "normal" diet for at least two months before celiac testing; longer is better.

My own childhood allergies did not start to resolve until I was older than your kids. I think I had a less restricted diet when I was 9 or 10 but I don't remember exactly. Unfortunately I got put back on wheat because the old '60s celiac tests were inaccurate and I lost my skin prick allergic reaction.

[Cara in Boston]

My son (6) tested positive on all the IgG tests and negative on all the IgA tests. The doctors seemed to think his results were odd.

My MD looked at his results and said he could NOT have celiac but we took him to a specialist at Children's anyway. They ended up doing a biopsy and it was positive for celiac - very positive.

He has ZERO symptoms other than behavior (tantrums, meltdowns, etc.)

Now, he gets a few symptoms if he gets glutened (sore joints, rash around mouth, wakes frequently in the night) but that is about it.

I had all the classic sypmtoms (for years, since pregnant with 2nd son) and tested positive on IgA tests but negative on all IgG tests. My biopsy was negative, but avoiding gluten has made all my symptoms go away.

It is all so very confusing.

Cara

[organicmama]

I'm thinking I'm going to do Enterolab testing to see if I have any IgA positives and to see if I have genetic propensity for sensitivity vs. celiac. It would explain so many symptoms I've had for years if gluten is the culprit. If not, it's all still a wait and watch mystery, where the rheumatologist continues to test me every few months sometimes getting funny results but without diagnosis.

I see it mentioned often that Enterolab is controversial. Pardon my ignorance, but why is that?

Also, for people with neurological and autoimmune issues (and the absence of GI issues), how long until most saw results? I feel mentally clearer, but still have a lot of fatigue and still have pain flare ups.

[mushroom]

Enterolab is only controversial because Dr.. Kenneth Fine who owns and runs Enterolab has yet to publish any of his reasearch backing his theories and testing in any peer-reviewed medical journal.

[Skylark]

Enterolab is only controversial because Dr.. Kenneth Fine who owns and runs Enterolab has yet to publish any of his reasearch backing his theories and testing in any peer-reviewed medical journal.

Also the unpublished research on his web site shows that a gluten-free diet is a better predictor of long-term out come than whether or not the person had antibodies on his tests.

If you are interested in your genetics, there is no harm in getting them done. Thing is, there are celiacs without the so-called celiac genes and people with "celiac" genes who tolerate gluten just fine. Dr. Fine thinks that DQ1 is more strongly associated with gluten intolerance and neuro problems so I'm not sure what you would make of your results. Chances are very good you have DQ2, DQ8, or DQ1.

I think I remember people around here with neuro saying that it takes a few months, and that you have to be very strict.

[organicmama]

I thought I saw a list of articles Dr. Fine had written in medical journals. Are those just not focused on his methods and that's the major concern?

[Skylark]

Fine's story is pretty much on his website. He is a published expert on microscopic colitis. He started suspecting that in some patients the colitis was caused by an autoimmune celiac-like reaction. He was disappointed in the inaccurate serum tests so he developed highly sensitive stool tests. The discovery of gluten-caused microscopic colitis was a very nice piece of science.

The problem isn't that he hasn't published at all, but that he has never published anything on the the stool tests. When that happens, particularly in someone with a track record of publication, you have to wonder why they aren't publishing. Perhaps he wants to keep the methods proprietary but the other reason might be that he suspects his data won't pass a peer review. Also, most of his customers couldn't read the paper anyway so why bother? He has a nice business going and only scientist skeptics like me saying "hey, waitaminute..."

He runs the test with VERY low sensitivity levels. A staggering 60% of the people who approach Enterolab because they are feeling unwell have anti-gliadin in their stool, as do 29% of healthy volunteers. There is other research that IS peer-reviewed suggesting that stool anti-gliadin IgA can come and go as a normal part of immune function. Even serum anti-gliadin IgA can come and go. (That's why you want the newer celiac panel tests along with anti-gliadin.) The stool anti-TTG is a better test, but I haven't seen many people on the board come up with anti-TTG from Enterolab. One person who did have anti-TTG missed getting treated for Crohn's for over a year because Enterolab said she had celiac and didn't mention that she needed to see a doctor to rule out other GI disorders. Not cool.

Fine has his lecture slides posted at Open Original Shared Link (works best with Internet Explorer), and as I mentioned, his own data show that fecal anti-gliadin IgA is a poor predictor of whether someone will benefit long-term from a gluten-free diet. In other words, you get much better information from trying the diet than from the fecal IgA test.

The genetics are fine if you're happy with only the HLA-DQ beta subunit. Unlike some services, which only tell you if you're DQ2 or DQ8 you will get the full results. It does not test for alpha subunit. It's not diagnostic but many people find it interesting.

[sreese68]

Also, for people with neurological and autoimmune issues (and the absence of GI issues), how long until most saw results? I feel mentally clearer, but still have a lot of fatigue and still have pain flare ups.

My symptoms are neuro, and I had originally seen my neurologist for peripheral neuropathy. I went gluten-free for 8 weeks before I did a gluten challenge (my bloodwork was negative, but my neurologist told me to go gluten-free anyway). I ate gluten 3 times a day until I was convinced gluten was a problem. I had jitteriness, hypoglycemia, brain fog, lightheadedness on and off, irritability, and the worst tingling in my legs to date. I never knew that my slight hypoglycemia was indicative of a health problem, so that was a big surprise.

I saw improvements in the tingling in my hands within a couple of weeks gluten-free, though they weren't 100%. My legs didn't have much improvement. I've been set back in improvements due to my challenge, so we'll see how the next few months go.

Oh, I got glutened this week when I had a friend help me get the last of the baking goods out of the house and wipe the shelves down. I didn't touch any of the flour or the cabinets and washed my hands a lot, so I was a little surprised. Felt jittery that night and my legs tingled a bunch the next day.

Anyway, I'd suggest keeping a log of symptoms, so you can track improvements or any changes you may notice.

[organicmama]

Thank you. Did you have only IgG positives yourself, or other positive tests? I'm frustrated reading from my insurance company today that IgG tests mean nothing, along with a bill. I am hoping my mind isn't just creating a temporary placebo effect.