Test Results - Help Me Understand Please

[ChristieKate]

I've been having some workup done with the GI after 6-8 weeks of symptoms including frequent cramping and bloody diarrhea. He originally was sure I had ulcerative colitis so I had the colonoscopy. He also ordered a bunch of bloodwork at that time.

I went for my follow up last week. He says my colon looks fine (but the biopsies aren't back yet) but that I have celiac disease. I am having an upper GI scope done on Thursday.

He's based this diagnosis on my bloodwork, specifically my ttg which came back at 199.4 with the normal range <=15. Also my total bilirubin is slightly high at 19 where normal is 3-17.

My question is that my other celiac bloodwork appears normal. But as I'm only a few days in to this, I don't really know for sure.

IgG 10.6 (6.19 - 14.3 g/L)

IgA 1.53 (0.76 - 4.04 g/L)

IgM 0.5 (0.44 - 2.68 g/L)

IgG1,2,3,4 were all in normal range as well.

My first cousin has celiac. I have many severe food allergies with anaphylaxis and asthma. I also have a history of "tummy troubles" my whole life and was hospitalized at age 12 (I'm 38 now) for a long time with weird GI symptoms the docs could never explain (pancreas, liver, spleen all involved as well as stomach and intestines). My GI says he thinks I may have been celiac all along. Shouldn't my B12 be low too then?

So, what do you think? Does the high ttg matter more than the other bloodwork that's normal? My GI feels very confident and told me to start the diet and join a support group, but I'm still wondering if he might be wrong.

[mushroom]

I've been having some workup done with the GI after 6-8 weeks of symptoms including frequent cramping and bloody diarrhea. He originally was sure I had ulcerative colitis so I had the colonoscopy. He also ordered a bunch of bloodwork at that time.

I went for my follow up last week. He says my colon looks fine (but the biopsies aren't back yet) but that I have celiac disease. I am having an upper GI scope done on Thursday.

He's based this diagnosis on my bloodwork, specifically my ttg which came back at 199.4 with the normal range <=15. Also my total bilirubin is slightly high at 19 where normal is 3-17.

My question is that my other celiac bloodwork appears normal. But as I'm only a few days in to this, I don't really know for sure.

IgG 10.6 (6.19 - 14.3 g/L)

IgA 1.53 (0.76 - 4.04 g/L)

IgM 0.5 (0.44 - 2.68 g/L)

IgG1,2,3,4 were all in normal range as well.

My first cousin has celiac. I have many severe food allergies with anaphylaxis and asthma. I also have a history of "tummy troubles" my whole life and was hospitalized at age 12 (I'm 38 now) for a long time with weird GI symptoms the docs could never explain (pancreas, liver, spleen all involved as well as stomach and intestines). My GI says he thinks I may have been celiac all along. Shouldn't my B12 be low too then?

So, what do you think? Does the high ttg matter more than the other bloodwork that's normal? My GI feels very confident and told me to start the diet and join a support group, but I'm still wondering if he might be wrong.

Hi, and welcome to the forum.

Of all the tests performed, the ttg is the most specific for celiac disease. I would agree that you most probably have it. Not everyone has low nutrient levels; that is why it is always suggested that levels be checked before supplementation. Also, it takes a while to draw down all the B12 stores in the body. Even though the blood test didn't show it, your tank could be nearly empty. My B12 tests were "normal" but at the very low end, and supplementation helped amazingly. You should aim to be in the middle of the range at least.

Welcome to the world of gluten free living. With a score that high I think there is little doubt.

[happygirl]

Of the tests you listed, the only test for Celiac is the tTG. The IgA/IgM/IgG -and IgG subclasses -(as you wrote it) are not Celiac tests per se, and are tests to see if you make enough of them or are deficient.

[ChristieKate]

Thanks for the help. I am appreciating reading through this forum!

So the testing for IgA/IgM/IgG show that I'm making enough (or have enough) of these and that I'm not deficient. But what exactly, does that mean?

I have been trying to learn about the tests, but honestly, I find it all very confusing! By the time I understand it all I guess I won't need to understand it anymore.

My doc said to start eliminating the gluten. But, then I read that I shouldn't do that before the biopsy. I'm assuming he said that as the biopsy is scheduled for only 9 days after we spoke? He also said to *start* eliminating things, but not to try to eliminate everything at once. So I guess I'll still be eating enough gluten for the biopsy to be accurate.

I've been using the 9 days to "say goodbye"to my favorite foods. My husband has been marvelous, surprising me and taking me out for my last chinese food (as I have known it) for lunch but also starting to bring home things like rice crackers along with the groceries he's picked up for the kids' lunches.

My kids are responding differently too. My teenager wants to be supportive but is worried she's going to have to stop eating her favorites! Even though I've told her that I don't plan for everyone's diet to change.

My middle girl has started looking up recipes that we can cook together!

My youngest keeps asking about specific foods. "Mommy, can you ever eat Oreo's again? No? I feel sad for you". She asks this about just about everything she is eating!

I'm not kidding myself. I know that the diagnosis is probably accurate. I guess there's a piece of me that is hoping to find out this was all for nothing. A touch of denial and a strong sense of disbelief are my constant companions these days.

[Jestgar]

My youngest keeps asking about specific foods. "Mommy, can you ever eat Oreo's again? No? I feel sad for you". She asks this about just about everything she is eating!

This is sweet!

Maybe you can take her with you on your first venture to find gluten-free substitutes (k-toos for oreos, eg). She might have a blast deciding what fun things mommy needs to get.

[gary'sgirl]

Just a little encouragement about the food. There are quite a few web sites that have amazing gluten free recipes. It's taking awhile, but I am starting to find some gluten free recipes that would rival any gluten one.

Check out glutenfreegirl.com and glutenfreegoddess.blogspot. They are both great writers and cooks/bakers.

I hope you transition well!

~Sarah

[WheatChef]

Thanks for the help. I am appreciating reading through this forum!

So the testing for IgA/IgM/IgG show that I'm making enough (or have enough) of these and that I'm not deficient. But what exactly, does that mean?

By testing for deficiency in your total immunoglobulins the doctor can help weed out a false-negative. For instance, if you had been deficient in total IgA and also received a low IgA-tTG result then the tTG test might have simply been low because your body just doesn't make many of any of the IgAs.

Intestine healing time is different in everyone but even after going gluten free your body still keeps attacking itself for a while. With a tTG score as high as you have the endoscopy might simply be to rule out any additional gut problems. Unless the lab specifically mixed up your tTG scores with someone else, you have celiacs.

It's a good thing your daughters are getting involved in this, not only for your own sanity but potentially for their health as well. Celiacs is a genetic condition meaning you may wish to get them tested eventually as well. Each of them has at least a 50% chance of carrying the genes for it (depending on how many copies of the gene you have).