Supposed Non-celiac Son's Lab Results - Help (please)!

[Cam's Mom]

Hi! I am hoping that the vast collective knowledge here can help me make some sense of this.

A little history (i'll try to be succint): daughter diagnosed with type 1 diabetes and was tested as part of routine screening for celiac. Turns up woppingly high in the tTg and confirmed diagnosis for celiac with villi blunting on endoscopy. She goes gluten-free - okay. Her twin brother (my son, obviously) is tested by lab order from daughter's gastro as he said all immediate family members should be tested.

Now for the BAAAAD mom part: when we went in for daughter's follow up, the doc said "oh, and i have you'r son's labs back, they are normal and we tested him for the gene and he does not possess the celiac gene. Now (as an excuse for being a complete lame @$$ idiot) - we were completely overcome with dealing with daughter's dire and immediate health issues that when we were given this info about our son we just let out a huge sigh of relief and left it at that.

Fast forward alomost 2 years . . . our entire house is gluten-free but son was still eating gluten at school, friends houses, restaurants, etc. He is very small (like 0 percentile for weight, slightly less than average height), he complains of stomach pain frequently and has what we would call a very high anxiety level and an increasingly wiked temper. So suddenly he decides (on his own) that he'd like to go gluten-free. We start to see amazing results. He's calm, happy, hungry as all get out and no tummy probs. So I call the gastro and ask for the medical records - I've got to see those lab results myself and they won't give me the numbers over the phone. The Gastro says he's not even a patient of theirs and finally they locate his labs mixed in with her chart. Okay, whatever, I say just mail me anything you've got on either of my kids. So they do.

Here are the results:

IGA is 6 with 0-19 being norm.

IGG is 69 with 0-19 being norm.

IGA is 36 with norm being 70-312

tTG is 1 with norm being 0-19

There is absolutely no record or evidence of any genetic testing having been done!! NONE!

What am I to make of this - how can they say this is totally "fine" he's got 2 "normals, a high and a low? Now I am under the impression that tTg is the big one to watch (daughter's was 180+ on diagnosis). And in that regard "1" seems great - but what about the rest? Do they mean anything?

Another little bit of info is that he had the same panel a year earlier (prior to daughter's diagnosis - due to his stomach pains) and the results were similar:

tTg=10

IGA = 9

IGG = 54

with the same norms as above.

I am trying to call the gastro to get some clarification but they say he is not a patient and that they would need to see him - can't respond to the labs and don't know anything about whether a gene test was ordered or not. I am so totally frustrated - no way would I take him to this quack!! And, now he's been on the diet for about 3 weeks because I thought we had already completed any testing we were going to do.

Please any insight, thoughts, ideas . . . what does it all mean???? Sorry, I'm kind of freaking out, I had hung my hat on the illusion of the genetic testing and now I'm lost. Help!

TIA!

barb

[ravenwoodglass]

The fact that your son is wanting to do the diet is great, let him. At present there are only two genes commonly recognized as celiac genes and there are an abundance of GI doctors that know nothing, literally about the neurotoxic effects of gluten. You could test with Enterolab they can do fecal testing for antibodies to gluten, casein, soy, eggs and yeast. They can also do a gene panel. They can not diagnose celiac but they can tell if he is forming antibodies. Many folks that have celiac or it's ?precursor? gluten intolerance do not have the recognized genes. Many of them are also conclusively diagnosed. You should see an improvement in your son's growth, health and disposition fairly soon. To be on the safe side I would also eliminate dairy totally for a couple months.

[Fiddle-Faddle]

If it makes you feel any better, those are very similar to my own blood test results (though mine were likely screwed up by being on prednisone), and I thought it was MORE than enough to warrant going--and staying--gluten-free. And I didn't even bother with genetic testing.

I don't think they know enough yet about genetics to rule celiac out (there ARE people on this board with biopsy-confirmed celiac who do not possess the so-called celiac genes), and they don't know enough about possible non-celiac-gene--caused-gluten-intolerance (for example, Lyme disease, mercury toxicity, and eosiniphilic disorders) to be able to rule celiac IN just by a gene test. Which makes the gene test practically worthless. All it can do is tell you whether you have a genetic predisposition t develop celiac, not whether it's actually been triggered.

[Cam's Mom]

Okay, one more question to ye of great minds (mine hurts right now!):

I was just reading on-line that a person with a total IGA deficiency could present with a false negative due to the deficiency resulting in an inability to produce anti-tTg. It went on to state that in that case, IGG is a better indicator for diagnosis.

So, then I extrapalate that his IGA being low (36) and his IGG being high (69) he fits neatly into this false negative category. Am I missing something? Maybe I am trying too hard to make sense of this non-sense. I am now calling my PCP because I have been tested twice and was neg. both times but I KNOW gluten makes me sick as a dog - could I be IGA deficient too? Hmmm.

I really should just be satisfied that we're all gluten-free and healthy and leave it at that but now I'm freaking out! And I am the one who was arguing with "threedee" about his double blind gluten testing at home - justice has been served - hope you're reading threedee!

Thanks for your feedback all!!

barb

[neesee]

If he is truely IGA deficient you might ask your dr to run an IGG tTg. Elevated IGG alone shows only a possible gluten intolerance, not celiac. With your dd being type 1 diabetic, you should definately do more testing on your son to be sure.

neesee

[AndreaB]

Whether or not he has the celiac gene or even has celiac, it sounds like he definately has a reaction to gluten.

IgG is a delayed allergic reaction. He does have a problem with gluten, with celiac in the family it would be best for him to stay gluten free. I'm happy to read that he voluntarily did and what an improvement it been for him.

You could test the genes through enterolab. I think the gene test is around $170.

[CarlaB]

So, then I extrapalate that his IGA being low (36) and his IGG being high (69) he fits neatly into this false negative category.

This is what I was going to say .... is that second IgA testing for his total IgA? If so, it would mean he's IgA deficient, which I think also affects the Ttg.

[Cam's Mom]

Hi Carla,

I think the answer to your question is yes (I'm so confused!!). The test which was 36 and categorized as "low" was for Immunoglobulin IGA (that's total, right?). The normal range was 70-312. So, would that make him IGA deficient thereby rendering the tTg test somewhat useless and calling into question the high IGG?

I know, I should just not care . . . but he's 7 and worried. He's been fighting with the chronic symptoms since he was 4 (and we've been having him tested, it's not like we ignored him) - but some gastro seems to think these test results indicate that he's "fine". I guess with the diagnosis being so clear in his TWIN sister we should just see the writing on the wall!

Do you think enterolab testing would help any or do I just need clarification on these test results from a doctor that actually knows something about Celiac disease. Why don't they say anything about IGA deficiency?

So I ran over to my PCP and got my medical records and this is what I've got:

IGA= 2 (0-19 norm)

IGG = 12 (0-19 norm)

tTg = 4 (0-19 norm)

Total IGA 79 (70-312 norm)

So, this is a totally beautiful clean bill of health - couldn't be better, but if I eat gluten I'm glued to a toilet for days, go figure.

Does anyone think enterolab could shed some light on it? For me, I don't care - I feel great, don't really care about gluten one way or the other and am spending the hours NOT on the toilet training for a triathlon, but for my kid - I feel like eventually he's going to need more info. Thoughts?

Thanks!

barb

[CarlaB]

Barb, I would go to someone who knows what they're doing to have the test analyzed ... it seems to me that his test would be inconclusive because of the low IgA. But, if you would want further testing, he would need to be eating gluten. I would guess that they would want to do a biopsy.

You can find out at home what Enterolab can tell you ... that is whether or not he's gluten intolerant ... Enterolab cannot diagnose celiac.

[mftnchn]

I think you are wrestling with what many of us deal with, we think we are celiac, but we don't have the gold standard positives for whatever reason. The reality is that the blood tests and biopsy are of limited value other than if they are positive--you definitely are. But negative with symptoms that respond to a diet--well, you fit into the area that is conflicted in the medical field. Some diagnose celiac, some diagnose allergy, some diagnose gluten sensitivity, and some say "you're just fine" but we know that last one is STUPID.

I'd like a more clear answer too, but am not willing to push gluten for months in order to have blood tests and biopsy that only might show the celiac.

Also I think you are correct about the low IGA, and I think if you could see a really good celiac specialist (find a referral from the board here might be useful), maybe he/she could do further testing that would be more conclusive. A twin with celiac is mighty suspicious.

Maybe eventually there will be a better test panel. For now we are stuck. Essentially we have a clinical diagnosis not one based on testing.

[Cam's Mom]

Just wanted to drop a line to say that I think we got our answer. . .

He got glutened last night

he had a stomach ache shortly after the offending food. Then he had several bouts of D today but most telling - the nasty temper is back with a vengence. We haven't seen it for the three weeks that he's been gluten-free but he is beside himself with anger and misery. And, when he runs out of things to melt down about he just sits in the middle of the room and cries. Says he's felt this way all day and can't stand being in his own body. Poor baby! (poor family )

That's enough proof for me. No more testing - just a nice clean gluten-free life!

Thanks for listening!

barb

[AndreaB]

That's a pretty good indication. I'm sorry he has such a reaction.

I'm glad you'll be able to keep him gluten free without worrying about further testing.

[mommida]

Some people have reported their "official" Celiac diagnoses have left them paying higher insurance premiums (health and life).

An un-official diagnoses can be a gift in disguise.