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Looking For Advice On Which Enterolab Test(s) To Do

HouseKat

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HouseKat Apprentice
HouseKat
Posted

This message was posted: Dec 14 2007, 04:32 PM

So, I just got back from the GI doc. He said to me, "You definitely do not have celiac disease." He bases this on test results - which state clearly, "Results do not exclude a diagnosis of celiac disease" - taken when I had been off gluten for three months and back on for only four days.

Here are the results:

AGA IgG: 1.5U/ml

AGA IgA: 0.8 U/ml

TTG IgA: 0.6 U/ml

EMA IgA: negative

Total IgA: 202 mg/dl

Alleles detected: HLA DQA 1*05 detected

DQ Genotype: DQ2-, DQ8-

I went gluten-free on Labor Day and the ignorant GI doc announced me "definitely not celiac" after I was on gluten for only four days before he did the blood panel. (Note: Even though the date on the fax showed that the results had arrived nearly two weeks earlier, it was obvious that when he pulled them out of my file it was the very first time he was looking at them. Shouldn't he have looked at them earlier?!)

I would now like to do some Enterolab testing, but I'm not sure which test or tests would be best to do at this point. Would the Stool Test for Gluten Sensitivity be sufficient? Or should I go for the Gluten Sensitivity Stool and Gene Panel Complete? (I could do the $99 test immediately, I'd have to save up a bit for the big package of tests.)

Kate

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Ursa Major Collaborator
Ursa Major
Posted

It appears that you have the 'official' celiac disease genes, not just one, but both. So, you don't need the gene test any more, which is included in the big package at Enterolab. Why don't you call them to see if they can give you a deal on the big package, if you exclude the gene test? Because it really is the best test.

Otherwise I would at this point go for the $99.00 one for now.

And for your GI to tell you that you definitely can't have celiac disease just shows you that he is an ignorant idiot.

Do you have a copy of the test results? If not, go and get one and drop him, he doesn't know what he is doing.

HouseKat Apprentice
HouseKat
Posted
  • Author
Do you have a copy of the test results? If not, go and get one and drop him, he doesn't know what he is doing.

I do have a copy of the results; when he gave me his bogus diagnosis I asked for a copy because I knew I'd likely be going elsewhere for a second opinion.

Once he had dismissed celiac he started talking about wanting to do tests for microscopic colitis and I B S!

Kate

CMCM Rising Star
CMCM
Posted

I'd had a celiac blood test (negative) but I was having a lot of symptoms AND I hadn't been eating much gluten for a long time, so I wasn't surprised about the negative blood test. I wasn't about to start eating tons of gluten again, so I decided on the Enterolab full battery of tests. I found it to be extremely informative because I learned which genes I have (yes, a celiac gene), I found out I was reacting, and I found out I had a very low malabsorption score, which I've interpreted to mean I probably had no appreciable villi damage...yet. I also learned I was casein sensitive. This is more information than any "doctor" has been able to provide, and it pointed me in the direction I needed to go. I'd really suggest the full panel for you. In the long run, it's cheaper than doing a bunch of tests individually.

So I will never know whether I had active celiac disease, whether I had villi damage. But it doesn't matter. Given my genetic predisposition, given the unpleasant symptoms I had, I now know I should never eat gluten again.

You can learn this for yourself, too. You don't need the stamp of approval of a clueless doctor!

hathor Contributor
hathor
Posted

I'm not sure you do have the celiac genes, although I don't know I'm reading the results properly. There are minus marks after DQ2 and DQ8 -- could that mean you do NOT have them? It also says DQ1 is detected and mentions nothing else in that category.

There is no need to redo the genetic testing. Just get the doctor to explain what the test results mean. Do you have double DQ1 (no laughing matter according to this double DQ1 person B) ) or what? There is research tying DQ1 to neurological problems from gluten and plenty of us have gastro problems too.

Is your doctor discounting celiac (or gluten intolerance in general) due to the antibody levels or the genetic testing, do you know? Some doctors don't think you can have a problem with gluten if you don't have DQ2 or DQ8, but this is incorrect.

I think the other Enterolab tests would be useful to get. You might even go for the casein and other substance testing as well to figure out if you should be avoiding those things, if you can swing the cost.

HouseKat Apprentice
HouseKat
Posted
  • Author
I'm not sure you do have the celiac genes, although I don't know I'm reading the results properly. There are minus marks after DQ2 and DQ8 -- could that mean you do NOT have them? It also says DQ1 is detected and mentions nothing else in that category.

There is no need to redo the genetic testing. Just get the doctor to explain what the test results mean. Do you have double DQ1 (no laughing matter according to this double DQ1 person B) ) or what? There is research tying DQ1 to neurological problems from gluten and plenty of us have gastro problems too.

Is your doctor discounting celiac (or gluten intolerance in general) due to the antibody levels or the genetic testing, do you know? Some doctors don't think you can have a problem with gluten if you don't have DQ2 or DQ8, but this is incorrect.

I think the other Enterolab tests would be useful to get. You might even go for the casein and other substance testing as well to figure out if you should be avoiding those things, if you can swing the cost.

Hathor,

Yes, those are negative signs after the DQ2 and DQ8 - I copied the info exactly as it appeared on the results sheet. I find it interesting that I did test positive for DQ1 but the GI doc completely ignored that result, zeroing in on the other two negatives as proof positive that I could not possibly have celiac.

The doctor also concluded that I do not have celiac based on the low antibody levels - he's completely ignorant about the need to be on gluten for 4-6 weeks before testing. I thought about challenging him on it, but just couldn't be bothered. I'm never going back to him again, so he's not my problem anymore.

When I go to see my PCP next and we discuss the results I will go armed with facts and research to show him why the GI's diagnosis is suspect. If I've been able to do Enterolab testing by then I'll bring those results too.

Kate

Sailing Girl Apprentice
Sailing Girl
Posted

Hi Kate,

If you can afford it (and none of this is cheap!), I'd definitely get the Enterolab gene test as well as the other testing. It might turn out that you've got DQ7 or DQ9 along with your DQ1. Your doc didn't screen for those because they're not recognized as Celiac genes in the U.S., just in other (more enlightened) countries.

Good luck!

Jane

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Ginsou Explorer
Ginsou
Posted

I'd go for the full Enterolab panel also. I got my (positive) results, and still had some problems and had additional tests done. Positive for casein and soy!! A complete surprise.

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