I'm wigging out a bit.

[Mama Belle]

My daughter was screened for Celiac as part of a trial at the BDC . Her endo just called to tell me that her TG results came back elevated, but not within diagnostic range. They want to do a re-test ASAP since she has almost daily stomach aches. I was put on a GF diet last year because I had a biopsy come back with a possibility of a Celiac diagnosis, but the blood tests they ran were different than the one they ran on my daughter, the results of the blood tests were also negative. So I am completely unfamiliar with this TG test. I was hoping to get some more information about TG results so that I can compare her results. Can anyone direct me to some information about TG? All I can find is info about IgG and IgA.

I can deal with the diabetes just fine, but I am so freaked out about the prospect of having to put her on a GF diet! I know I can't really do anything about it right now, but I at least would like to arm myself with some info about her test results.

Thanks!

[aklap]

Hi Heidi,

It sounds like you have a bit of experience with the gluten free diet (GFD). Are you currently maintaining a GFD? One thing to keep in the back of your mind - if all tests are negative - do a gluten free trial and see if she has improvement. Gluten can cause problems without having CD [I'm living proof of that].

I can understand you freaking out, but look at it this way...if going GF helps...you are catching this so early for your daughter. Continued gluten exposure to those that can not tolerate is not healthy. Better to catch it now than 5, 10, 15 years down the road. By then, irreparable damage could've been done. Currently the ave length of diagnosis time is around 9 years [it was 11]. That's 9 years of damage being done that would not need to occur. One positive item about CD - it's one of the only/few diseases that can be completely controlled with "simple" diet modifications - no drugs are needed.

You may not be able to directly compare results. If they ran different tests - other than the tTG, you can really compare them directly.

Have you gotten copies of all your lab results? That's always a good idea. So many times, things are reported as "normal", when they're not, and things are never reported to you at all!

The tTg tests are designed to look for tissue damage [the antibodies that cause it]. When it comes to villi damage, this test does better at picking up more severe damage [aka total villous atrophy]. It does not do to well when damage is slight. It is highly specific for CD, which is why it's the "favored child" now, but you really need the full panel [see below] to get a true picture.

Here's some info for you on the tTg test:
http://www.enabling.org/ia/celiac/diag-tst.html#Transglutaminase
http://www.labtestsonline.org/understanding/analytes/celiac_disease/test.html
http://www.immcodiagnostics.com/Products/ELISA/download/1157%20Product%20Insert.pdf


Here's some info from my Celiac Testing Info post. I don't know if you've seen it or not:
Doctors will usually start with a set of blood tests called a Celiac Panel that should consist of the tests below. If the panel does not include all tests, you may not get the entire picture.

Please request your doctor to run ALL of these tests. Not all Doctors will know about Celiac Disease (CD) and may be unfamiliar with proper testing. This is where educating yourself becomes important.

You must be consuming gluten in order for these tests to be as accurate as they can be. Do not go gluten free (GF) before these tests are done.

If the blood tests come back positive, they may want to scope you to check for intestinal damage (the gold standard for Celiac diagnosis).

A complete Celiac Blood Panel:

Antigliadin IgA and IgG*
May indicate Non Celiac Gluten Sensitivity (http://www.celiac.com/st_prod.html?p_prodid=1417&p_catid=&sid=91hH9H1jiMYsE95-48107483107.80)


Anti-tissue Transglutaminase Antibody (tTG), IgA and/or anti-endomysial
An indicator of villi damage [slight damage is not always detected].
These tests are highly specific to CD.
However, autoimmune diseases can skew the results of these tests (http://www.celiacdisease.net/Default.aspx?tabid=85#appointments)


Total serum IgA
Rules out IgA deficiency. This must be run to ensure proper IgA test results


Anti-reticulin IgA
Rarely used but, a very thorough doctor will include this



More on Diagnostic Testing (http://jccglutenfree.googlepages.com/diagnostictesting) can be found in the The Gluten File (http://jccglutenfree.googlepages.com/)

Clan Thompson's Testing and their Results (http://www.clanthompson.com/exp_doctor_showqs.php3?category=Tests%20and%20Thei r%20Results&category_id=4)

Prometheus Labs CeliaPlus (http://www.prometheuslabs.com/wwp/pdf/Diagnostic_Services.pdf). Prometheus Labs is a respected and well known lab for processing Celiac Blood Panels.

Gluten Intolerance Group - Celiac Disease Diagnosis (http://www.gluten.net/celiac.htm#diagnosis)

American Celiac Disease Alliance - Diagnosis (http://americanceliac.org/diagnosis.htm)


*The Antigliadin IgA and IgG tests have fallen out of favor due to the lack of specificity [other medical issues can be the cause of these antibodies]. However, some organizations and Doctors do feel these tests are of importance and still include them in their panel of tests. Gluten maybe an issue, and should be investigated a bit further. These tests ARE included in followup testing to determine dietary compliance, so there is value to them.

[Mama Belle]

Thanks so much for the response, it was quite helpful.

I am not currently on a GFD because my GI Doc didn't think I actually had celiac. I was given a very unofficial potential diagnosis and started on the GFD for about a month. My symptoms had no response to the GFD, and I was about as careful as one can be, I even bought all new GF spices for my pantry. When eating out I ate at our local GF restaurant. As I said before my celiac panel was negative. But when my endoscopy report came back it showed some very minor damage consistent with Celiac, but no official "This is Definitely Celiac Diagnosis". Basically the GFD was a stab in the dark for us to see if I responded. Abouth 3 months after stopping the diet my symptoms subsided entirely. I still have transient right lower quadrant pain, but nothing major.

As far as my daughter goes ... I wouldn't really be that stressed about it (I've done GF before and it seems workable) if it weren't for her diabetes. I am just clueless as to how I can get my child to eat GF foods (which let's face it some of them are just so-so) when it is hard enough to manage her food intake with her insulin needs. We are getting her on the pump in the next couple of months which I am sure will make it easier to manage with the diabetes. Plus it is so hard to deal with the fact that she already "goes without" some of the foods all of her friends eat and she hates that! Adding a GFD is going to be like pouring salt in the wound.

I know catching it early is key and I am ultimately only wanting what is the best for her. I just know it will be hard on her if she ends up having to deal with one more restrictive disease. Of course if she goes GF, so will I. There is no way I'd let her do it alone. At least I have all of the books and information (plus a bunch of leftover GF spices from my experience). :)

And I know I am totally getting ahead of myself. She may be totally fine. I guess with the tTG the results can be skewed by other autoimmune diseases which could be the case here ... I'm crossing my fingers.

Thanks again for all of the info!

[aklap]

Thanks so much for the response, it was quite helpful.

Great!! You're welcome :)

But when my endoscopy report came back it showed some very minor damage consistent with Celiac, but no official "This is Definitely Celiac Diagnosis". Basically the GFD was a stab in the dark for us to see if I responded. Abouth 3 months after stopping the diet my symptoms subsided entirely. I still have transient right lower quadrant pain, but nothing major.

This would concern me. Damage is damage. Do you know how familiar with CD your Gastro is [how many CD patients he has]? Biospy results can be tricky to read. If they are not mounted correctly [some have mounted them backwards or not the correct orientation], or read with someone that is skilled in looking for CD damage - the results can be inaccurate. Damage can be very slight and a trained eye will see this. Villi damage can be patchy. If there are not enough samples taken, the results can be inaccurate. There should be at least 15 samples taken (http://www.clanthompson.com/exp_doctor_showqa.php3?question_id=52&category=Tests%20and%20Their%20Results&category_id=4) in order to get an accurate result. I know my gastro only took 4. Luckily I didn't listen to my gastro ;). If I did - I'd still be suffering [or dead].

I wish you and your daughter well!! Please post back here with here results, I'd be interested in knowing.

FWIW - I would venture to guess your remaining issues would disappear too ;) It can take time [weeks, months, even years] for people to fully reap the benefits of being GF. Plus it takes time to weed out ALL forms of gluten. It hides in EVERYTHING!! Like Twizzlers!! [that bit me big time!!] :) It took me a good 6 months before I felt comfortable with my food choices and 1 year to really feel "at one" with this lifestyle.

Take care!!

[Mama Belle]

My GI is one of the best in town and very familiar with CD. When he called me with the biopsy results he told me that if it was in fact Celiac we caught it so early that it was pretty hard to tell that it was Celiac. I don't have my results in front of me. But I think I remember that he took a ton of samples. He also mentioned something about how he has had other folks who did the gene testing who had no celiac but had other sensitiviteis (like corn) and had the same type of minimal damage on their biopsy report that I had. He said that at this point he couldn't rule out some other type of sensitivity, but he actually thought it was a completely separate issue. I have to say that I have begun to doubt the decision to stop the GFD. I've had pretty substantial iron deficency issues (ferritin serum of 3 ... not good) that were just recently uncovered, and that was a huge red flag. I will probably end up going back to get another celiac panel done, especially if we find that my daughter has it.

[aklap]

You are correct!! Iron Defic. is a HUGE red flag! :eek: Particularly if there's no known cause.

Yup - other sensitivities can cause villi damage. Corn and dairy are 2 of the biggies!

[Mama Belle]

You are correct!! Iron Defic. is a HUGE red flag! :eek: Particularly if there's no known cause.

Yup - other sensitivities can cause villi damage. Corn and dairy are 2 of the biggies!

I have major dairy issues (not lactose intolerance -- more of an issue with milkfats), so perhaps that is what prompted my GI doc to mention the possibility of the other sensitivities.