Help with lab results (IBD, Celiac, Crohns)

[radish]

6 year old daughter has had tummy issues since birth (mucous/bloody stool) Off dairy/soy since then.

2011 tests

Immunoglobulin - 142

IBD test - "Atypical ANCA"

IGA 2.1

IGG 2.9

Do these low numbers mean anything? Ranges says below 20 is negative..?

Dr days this is considered "negative" results

more testing in 2012

Prometheus test shows the HLA DQ8 gene for Celiac

We are now off gluten, but I see that the DQ8 is only in 5% of Celiac patients..?

Any help is appreciated!

Regina

[scsigrl]

Did they do tTG testing? 

[radish]

doesnt look like it.

should i ask for TTG and TTI

i have an appt tomorrow

[scsigrl]

If you are at all thinking of Celiac (and with one genetic marker, I would think it something worth looking at) I would demand a FULL Celiac panel.  It's 3 or 4 tests including tTG.  That is the blood test that is used to see if a biopsy s necessary (though with some history or family link they will dx based on blood testing alone.)

If you google Celiac panel you should be able to find all the tests it covers.

Sorry, I am only knowledgable about Celiac and food allergies. Can't help you out any with the others.  

Hugs. It's so hard trying to figure it all out.  Best wishes to finding answers and health for your kiddo!

[radish]

thank you, ill look into it tonight-

[jmarroq]

In the same boat with 6 yr old daughter (was preemie). Lots of acid. Used to vomit in her sleep...actually burned her cheek because she would sleep right through it.. Still vomits in her mouth several times a day. At times has had very bad tummy aches too. Hates to drink too much because it hurts and barely eats breakfast. It seems mostly upper GI...lots of gasping, burping. Mostly constipated looking stools. Sometimes blood when wiping. She says sometimes her vomit is mucus-like. Already had endoscopy a couple of years ago. Had upper GI barium test shortly after birth while in NICU. Doing stomach emptying study with solids next week, but worried because she hates oatmeal, and that is what they give them to swallow the radioactive material. Need to practice! Never did any elimination diets...just did rx on an off over the years but couldn't seem to do it 2x daily...only once. Now that we are off rx she seems to be doing better! Seems like every time she is scheduled for a test, her symptoms clear up!! UGGGH! Hoping to get some answers from this upcoming test. Doc also ordered blood work to check for things like celiac disease. I understand where you are coming from!! Let us know what you find out.

[radish]

oh man, its so hard.

luckily our ped has been pretty easy when it comes to my requests for bloodwork. thank goodness!

[dawnberries]

What about allergy testing?  My ds's first symptoms were blood and green mucous in his diaper.  He had allergy testing (IgE blood tests) at 5 mo's and we found several food allergies.  His symptoms are generally hives and other, more delayed skin issues.  Bananas make him vomit, but he tests neg. for those.  It would be easy to have the allergy blood testing done and if something was found, you could just avoid it.  There is also an IgG test for delayed reactions but we have not had those done.
 

[scsigrl]

Originally Posted by dawnberries 

What about allergy testing?  

Because of the high false +'s in allergy testing, it ins't recommended to go on a "fishing expedition" to try and find things that may in fact limit a diet for no real reason other than a + test.  If there are things (hives, vomiting, breathing troubles) yes, allergy testing would be recommended.  GI issues related to foods are usually IgG mediated and would not show up on traditional (IgE) allergy testing and alternative testing doesn't had a lot of science behind it from my extensive reading.

[dawnberries]

Originally Posted by scsigrl 

Because of the high false +'s in allergy testing, it ins't recommended to go on a "fishing expedition" to try and find things that may in fact limit a diet for no real reason other than a + test.  If there are things (hives, vomiting, breathing troubles) yes, allergy testing would be recommended.  GI issues related to foods are usually IgG mediated and would not show up on traditional (IgE) allergy testing and alternative testing doesn't had a lot of science behind it from my extensive reading.

I wasn't suggesting a fishing expedition.  We tested for the top 8 plus a couple of thing that I suspected (I did keep a food diary).  If  you get the same answer with two different methods (food diary & test), then that would be really useful.  And finding out if any of the top 8 are causing problems would take such a short amount of time as compared to eliminating them from your diet, not to mention how much that sucks.  As I said, my ds's first symptoms were blood and mucous in his diaper.  Perhaps I am way off, but just thought that since my son had the same symptom, perhaps his diagnosis and our course of action might be useful information and a possible way, if not to find some answers, then at least to rule out a potential cause.

[scsigrl]

Even Top 8 testing isn't suggested. If there is a known/suspected issue, test for THAT thing, not all 8 just for the sake of it.  

You are correct that testing and a diary would be useful but it is also important to remember that the testing is 50/50 so even WITH a +, the only 100% way to know for sure is a direct trial.  I am not suggesting anyone try a direct trial without D'rs guidance but it is the only 100% accurate "test".  

[radish]

We've done allergy - all negative

We've done full celiac - negative except for the DQ8 gene showed up

thank you for the replies.