Help Me De-Code These Results

[user001]

So as i posted earlier, I have been gluten-free for 4 months and the doc ran the celiac blood tests without me first doing a gluten challenge. I dont understand the results, so someone help me de code them.

 

Tissue tansglutam ab IGA- >100

IGA- 202

endomysial antibody SCR (iga)- postive A

endomysial antibody titer- 1:160

 

No clue what any of it means. also it looks like IGA is just on there 3 times?

[RMJ]

IgA is a type of antibody, but just saying IgA doesn't say what "antigen" the antibody recognizes.

IgA 202 is your total IgA level. This is checked because some people with celiac don't make much IgA - if that had been the case and the other IgA tests were negative, one couldn't say yes or no to celiac and then would have to test IgG antibodies. But yours is in a normal range so the other tests are valid.

Tissue Transglutaminase IgA and endomysial antibody IgA are both tests for celiac disease. They are performed in quite different ways. Yours are both definitely positive. I don't know how much more detail you want - I am a scientist so might overdo the explanation if I don't stop now!

[user001]

Thanks for the details. If anyone could dumb that down into lay people language, it would be great! All I know is, the doctor called me to tell me that I probably have Celiac disease, but I have no clue how accurate she is presenting those details. Especially because I haven't eaten gluten in 4 months.

[nvsmom]

The Tissue transglutam Ab IgA is the anti-tissue transglutaminase immunoglobulin A (tTG IgA) and indicates there is an attack going on in your endomysial linings of your intestines. Over 100 could be very high (like 200 or 500) or it could be 101. That does seem high to me for being gluten-free - I would suspect some cross-contamination with a number that high.

 

IgA is your total serum immunoglobulin A, which just shows how active the immune system that works in your mucosal linings are.  They test it because 5% of celiacs are deficient in IgA which would cause all IgA based tests (like the tTG IgA) to result in a false negative.

 

Your endomysial antibody titre (EMA IgA) is quite high at 1:160. I believe normally is usually 1:10 or lower. The titres are doubled each time they are run so it would go up like 1:20, 1:40, 1:80, 1:160. 1:160 is about the highest I ever see that test.  After being an untreated celiac for many decades, mine was 1:40.  The EMA IgA tends to come down faster than the tTG IgA.  You get EMA IgA testing positive when your body already has significant intestinal damage caused by tissue transglutaminase antibodies (tTG). Basically, your body senses gluten, and that the intestines are damaged, so it sends in the EMA to basically wipe out the top layer of your villi to get rid of the problem. The EMA IgA is rarely positive in early celiac disease.... or in those who eat gluten-free.

 

You definitely have celiac disease. The EMA IgA is 98-100% specific to celiac disease, meaning that 98-100% of the time, a positive test is caused by celiac disease. The tTG IgA is also highly specific to celiac disease and tends to only give (rare) false positives for those individuals with a weak positive test result... which is not you.  See this report (page 12) for more details: Open Original Shared Link

 

If those are your results after 4 months gluten-free, I would check your diet carefully for gluten.  I would guess that you are getting small amounts of gluten somewhere. Check soy sauce, worchestershire sauce, teriyaki and BBQ sauces, all seasonings, boullions, old baking supplies (like sugar that has had flour coated measuring cups dipped into it), medications, vitamins, lotions, soaps and shampoos (which could get into your mouth), snacks, and be extra careful eating out. You will need a new toaster, some new wooden spoons, and maybe a new collander or pans if they are damaged and could have gluten in the cracks.

 

Best wishes and welcome to the board.  

[kareng]

My TTG IGA was very positive after a year. I was extremely gluten-free. My original was like yours - >100 . Who knows how over! It might have been fifty million trillion zillion. I put a link on your other thread from Celiac experts. The thing to do is to see how it goes down in 6-8 months of serious gluten-free.

And, since you were gluten-free for reasons other than Celiac, you may not have been as strict as a Celiac - took the burger off the bun, ate fries from a shared fryer, used soy sauce, ate cornflakes, etc.

[user001]

That's crazy. I already have ocd and now im feeling like im going to go insane over this!

[1desperateladysaved]

I am so glad for you that you made this discovery even after being gluten free for 4 months!

 

Dee

[nvsmom]

That's crazy. I already have ocd and now im feeling like im going to go insane over this!

The first few months going 100% gluten-free are a bit stressful but once you get in your groove, it gets much easier.

[user001]

Most of my cookware is expensive calphalon cookware, fairly new! Is there anyway to clean it so that I can rid it on these freaking gluten particles I cannot even see?! So nerve wracking!

[kareng]

Most of my cookware is expensive calphalon cookware, fairly new! Is there anyway to clean it so that I can rid it on these freaking gluten particles I cannot even see?! So nerve wracking!

Just wash it good. No big deal.

[user001]

That's all? And i shouldnt be using the wooden spoons i used for pasta? and the non stick i used to use for pancakes? trash them?

[kareng]

Use some common sense - can you wash it well? Get into the little cracks and clean them out? Kind of hard to do with wooden spoons and colanders - but good pans should be cleanable.

[notme]

check out the newbie 101 thread in the coping section of the forum.  lots of great advice and some tricks of the trade  welcome to the best club you never wanted to join 

[Fenrir]

I'm relatively new to living gluten-free but it is already part of the routine now. I've found there are a lot more foods I can have than I first thought, just learn to read labels well and go to the store and spend a few hours walking around reading labels. You'll find it isn't as hard as you first thought.

[IrishHeart]

I strongly suggest you get the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

Tons of great advice and excellent information in there by over 50 leading celiac experts and celiac nutritionists. 

 

Read this thread:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

What doctor just called and said "you may have celiac" like that and did not schedule a follow up or a visit with a nutritionist or other testing?

That's not very helpful at all. It's also not very definitive. 

Sounds like you need a good GI doctor to me. 

 

Do not stress out over this, okay. That does not help you heal at all. Stress creates inflammation, insomnia, all sorts of muscle pain.

Relax. breathe and know this: we all learned to adapt and so will you. In time, you may even find your "OCD" is gone.

Best wishes. 

[user001]

Thanks Irish, it was s nurse practitioner, she's only there twice a week I found out, so it took me over a week to get results with the holiday. I saw a gastro yesterday, he has doubts about celiac, but claims I need an endo, which happens to be at a surgical center that he owns. :/ and said I don't need to do a gluten challenge. I'm eye rolling so hard right now. Because In my little amount of research, I know he's wrong.

[IrishHeart]

Thanks Irish, it was s nurse practitioner, she's only there twice a week I found out, so it took me over a week to get results with the holiday. I saw a gastro yesterday, he has doubts about celiac, but claims I need an endo, which happens to be at a surgical center that he owns. :/ and said I don't need to do a gluten challenge. I'm eye rolling so hard right now. Because In my little amount of research, I know he's wrong.

 

I do not think he is wrong at all. I think he wants to make sure you have been diagnosed properly and maybe also eliminate other conditions.

You may well still have evidence of villous blunting if your antibodies are still high. 

 

If your test results indicate celiac, why does he 'doubt" it? i do not understand. 

 

Despite some of our misadventures with the medical community, I have found that not all doctors are asshats .  My new GI/celiac doc is awesome and he uses the surgical center at his practice and he takes good care of me.  

 

it's your call of course, but I'd want to make sure i had the right DX and that nothing else was a problem. 

[user001]

Im sorry, I meant he has NO doubts about the celiac.My symptoms are getting lesser as time goes on, i think i had a huge boost of healing at around 2 weeks gluten-free but its been slow going ever since because i have been eating gluten-free junk! I think i need to be really strict and just eat whole foods for now.