Awaiting Results

[Chuck1004]

Hello!

Let me just say that I accustomed to finding forums with three or four active members with threads that haven't been posted in since the last presidential administration, so I am very grateful to find this place tonight,

Last year, I did what a doctor recently joked was the stupidest thing I could do, entering a new decade of life. I got a physical. A couple of numbers here and there were quirky from the blood test, followup labs were scheduled, sidelined by a random bout of pneumonia, rescheduled, a battery of tests for everything under the sun to explain mildly elevated liver numbers and a weird platelet count were done, leading to the discovery of ten minor things wrong with me I easily could have lived without stressing over, and around there the furnace broke and I needed a root canal and my number stabilized. We declared victory.

Three months ago, on the six month anniversary of V-day, I did the second most stupid thing I could do. I asked for a repeat lab. The wacky numbers were back, specifically a mildly elevated liver enzyme and some clumpy platelets. My PCP referred me to a hepatologist who could fit me in two months from Friday. Around this time, my wife decided that after years of eczema she was going to try a month long gluten free diet to see if she had an allergy to gluten. She's a chef and I could burn water, so I joined in. The diet was fine, the food was great, and after four weeks she was ripping her arms off so back came the gluten and finally came my liver appointment. The Doc wanted a battery of tests and a liver biopsy to put to bed whether I had anything beyond fatty liver. One of the items he was checking me for was celiac disease. I joked with my wife that with all the horror diseases I've researched for months, watch I have her horror disease.

That was foreshadowing.

Anyway, the liver labs weren't that bad, the platelets were explained away as I just need a special tube during blood draws, and my TTG IgG antibody lab came back negative. I was told there were more celiac labs to follow but they doubted I had it. The biopsy was canceled. Last night, out of curiosity, I logged in. My TTG IgA lab was back, and with a range of 0-15, I show a 45.62 with a big fat positive next to it, and IgG and IgA Gliadin labs with the full celiac interpretation panel are not back yet. IgA was normal. I called back today bright and early and didn't receive a call back. I doubt I will until all the labs are back.

I know there are FAQ pages, but I find a lot of contradiction, I've read the TTG IgA is very accurate but can lead to false positives if you have liver disease. (I have a fatty liver,). Waiting for some of the liver labs to come back I feared I was going to discover horrible liver disease where there was nothing I could do. I never expected the possibility of celiac disease. I've never had symptoms! Compared to what I was fearing, if I do have this, I am comforted that I can do something about it.

Sorry for the long story, but can someone help me make any sense out of these labs?

[Chuck1004]

Me again - the doc's office called back to say the doc couldn't speak with until all test results are back, hopefully by the end of the week. My SMA and AMA were negative. ANA was positive at 1:40 and speckled, which did not seem to alarm them. I read the TTG igA antibodies can also indicate a liver disease, which concerned me because of my fatty liver. Any advice or suggestions most welcome!

[MitziG]

I am not familiar enough with the tests to say for sure, but I think your positive one was indicative of autoimmune disease, not necessarily Celiac. There are autoimmune liver processes that may be your issue. But again, my knowledge in this area is fuzzy. Perhaps a bump up will get you answers from others however.

[Chuck1004]

Much appreciated - I found conflicting information on that and since they don't want to talk to me until all the results are back in, I am climbing the walls.

Ttg iga was 45.62, with normal of 0-15.

AMA was negative.

SMA was negative.

Ttg igg was 4.62 and negative. Is there generally a correlation between this and the top number?

Iga was 261, with normal range 69-309.

ANA was positive at 1:40, negative above that, and speckled. Normally negative at 1:40.

Fatty liver.

ALT mildly elevated normally to 55. Normal range 0-55, my hospital's range 0-40 with usually the same result, so not out of range here.

Antitrypsin deficiency carrier.

Any thoughts on what it could potentially be or what it likely is not are very helpful! Thank you!

[Chuck1004]

I heard back this morning. My gliadin ab IGG came

back at 1.05 and the Gliadin iga at 2.35, with 0-15 being the normal range. The TGG IGA again was 45.62 and the TGG IGA was 4.

Despite only having that one positive test the GI doc suspects celiac disease and is scheduling a biopsy. I asked if there could be anything else it could be and she indicated it could be something else but again her suspicion was celiac'a disease as the TTG IGA is the most specific test.

Anxiously looking for opinions - is it normal to test negative

On the gliadin tests if you are a celiac or is it now more possible this is an autoimmune liver issue?

[MitziG]

Bumping this topic again- does anyone have some answers for this gentleman? Please let us know what your biopsy results are when you get them back!

[Chuck1004]

Very much appreciated! Any help anyone can offer would definitely help take the edge off until the biopsy on the 22nd.

Specifically,

1) Could the elevated ANA be related to Celiac?

2) Is it common for the anti-gliadin to be negative?

My fear, with the ANA and only the TtG IgA being positive out of the panel, is that it's a more serious autoimmune condition. If that theory is out of whack, I'd love to hear!

Thanks!

[ciamarie]

Your being on a gluten-free diet for a month prior to your tests could make a big difference in some of the testing, it sounds to me like your doc is on top of it. Celiac can actually cause elevated liver enzymes, I think there's a recent thread on here with some details about that. If you're having an endoscopy soon, continue to eat gluten!

[mushroom]

I endorse what ciamarie said - go ahead with the endoscopy while eating a full gluten diet. There ARE other things that can cause elevated tTG, and it is not the most specific test for celiac - the two that are the most specific are the EMA, and the newer DGP (deamidated gliadin peptide).

How long have you been back on gluten, because one month gluten free can mess up your results quite substantially. If you want a really accurate endoscopy you should be on gluten for a full two months before the test (or any celiac blood testing for that matter).l Perhaps you could ask your doctor to run the DGP??? By the way, you do not need for all the blood tests to be positive - that's why it is a good idea to run the entire celiac panel instead of just a couple of them (the ones you had were the older tests) because you never know which one will be positive.

Did you feel any better eating gluten free??

[Chuck1004]

I endorse what ciamarie said - go ahead with the endoscopy while eating a full gluten diet. There ARE other things that can cause elevated tTG, and it is not the most specific test for celiac - the two that are the most specific are the EMA, and the newer DGP (deamidated gliadin peptide).

How long have you been back on gluten, because one month gluten free can mess up your results quite substantially. If you want a really accurate endoscopy you should be on gluten for a full two months before the test (or any celiac blood testing for that matter).l Perhaps you could ask your doctor to run the DGP??? By the way, you do not need for all the blood tests to be positive - that's why it is a good idea to run the entire celiac panel instead of just a couple of them (the ones you had were the older tests) because you never know which one will be positive.

Did you feel any better eating gluten free??

About two months ago I ate less gluten than is normal for me, but did not eliminate it from my diet. My wife was testing to see if she had a gluten allergy so most of our lunches/dinners had no gluten for a few weeks (she's a chef and was sampling a lot of gluten free dishes), although I never gave it up. I didn't notice a difference when I cut back on the gluten, although now that I'm cognizant of my gluten intake I am noticing stomach issues after I eat. It's chicken and egg, because I'm also nervous. I developed IBS-like symptoms last year from nerves when every blood test resulted in either something new wrong with me or requiring another round of tests. Looking back on it, maybe it was the gluten!

Thanks for the info that not all the tests have to be positive! It's one thing to know it technically and another to hear it in practice. When I commented to the doc that the anti-gliadin came back negative, they made a comment that the effective rate was only 80% for that particular test. 80% sounds like a lot when you're nervous!

Would you recommend I request the DGP after the biopsy if the results come back negative? I take it the DGP is cut-and-dry?

[mushroom]

Would you recommend I request the DGP after the biopsy if the results come back negative? I take it the DGP is cut-and-dry?

Well, thre is an error rate on all the testing, but there are seldom (as in extremely rarely) false positives on all celiac the tests except fpr the tTG not being specific for celiac because it can be positive in other autoimmune diseases. If the tTG and the DGP were both positive, I think that would be more reliable, personally, than having the endo be positive, because the endo depends a lot on 1. the skill of the doctor in recognizing where to biopsy, and in his taking enough samples, and 2. the skill of the pathologist in reading the slides. The error rate in reading is higher outside of the major celiac center hospitals. Often you can send your slides to be reviewed by someone else if they ome back negative.

Sometimes we don't recognize what are gluten symptoms until we eliminate it from our diets. Things we thought were 'normal' suddenly disappear

[Chuck1004]

That's what I'm finding now! It's very strange to micromanage your day and see if your definition of "normal" has been off for all these years!

If my testing comes back negative, I'll definitely request the second test. Thank you!

I've read that Celiacs and autoimmune diseases can go hand in hand. Is it likely if they confirm a Celiac diagnosis on the endoscopy that I'll also want to be checked for other antibodies as well?

I've read that 95% of people with Celiac's Disease have those elevated TtG levels. Is there any statistic of what people who have those elevated TtG levels have Celiacs?

With that, I may be out of questions!

[Chuck1004]

I heard from the Doctor today. Test results are in the mail, but it's positive for Celiac's Disease.

As I've had no noticeable symptoms and am in a position to more easily adapt to a gluten free diet, I'm actually a bit relieved. If the biopsy came back negative I was fearing more tests for autoimmune conditions or something that would require medication in place of a diet change to repair. And at 31, I'm hopeful a gluten free diet will lessen the risk of problems as my intestine heals.

I did ask the Doctor if they could tell by the biopsy the degree of damage, and she indicated that it merely confirmed the diagnosis (in addition to positive TtG antibodies). I had been under the impression they could tell the degree of damage?

[mushroom]

Nurses are not necessarily the most reliable of reporters on celiac disease. There is generally a pretty good indication of the degree of damage in the pathology report. Congratulations on getting a full diagnosis! And yes, no medications or surgery, just a dietary adjustment Not that this is a piece of cake mind you, but it does help if you know for sure what you need to do.

[Chuck1004]

Thanks for the reply! What concerns me is it wasn't a nurse but the Doctor who did the endoscopy! I've done some reading since I posted this and I see that she should have had more information for me, so I'll look forward to getting those results in the mail in the next couple of days and will post them here.

[squirmingitch]

And lucky Chucky you; your wife is a chef! I bet she makes you some lip smacking gluten-free food. Hey, maybe she'll decide to open a gluten-free restaurant.

Congratulations on getting a diagnosis & yes, there are worse things to have. Celiacs do it without medication!

[GFinDC]

Thanks for the reply! What concerns me is it wasn't a nurse but the Doctor who did the endoscopy! I've done some reading since I posted this and I see that she should have had more information for me, so I'll look forward to getting those results in the mail in the next couple of days and will post them here.

The endoscopy results are rated according to the Marsh scale. The damage to the villi will usually repair after a while on the gluten-free diet. It may take some time to totally heal though. Some people get better faster than others.

Liver problems are higher for celiacs than non-celiacs. So reducing or eliminating alcohol may be a good idea.

Thyroid problems are also associated with celiac disease, so it might not hurt to be tested for that.

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[Chuck1004]

I spoke to the Doctor tonight as I won't have the results until this weekend. She indicated they performed the biopsy which confirmed Celiac Disease but they don't perform a test for the March scale. Is that normal? She described the degree of damage as "mild."

[sa1937]

I spoke to the Doctor tonight as I won't have the results until this weekend. She indicated they performed the biopsy which confirmed Celiac Disease but they don't perform a test for the March scale. Is that normal? She described the degree of damage as "mild."

Normal? I don't know as the pathology report on my positive biopsy didn't mention anything about the Marsh scale either.

[Chuck1004]

Normal? I don't know as the pathology report on my positive biopsy didn't mention anything about the Marsh scale either.

Thanks - that's good to know that I'm in good company!

I did receive my results this morning.

[Bubba's Mom]

I spoke to the Doctor tonight as I won't have the results until this weekend. She indicated they performed the biopsy which confirmed Celiac Disease but they don't perform a test for the March scale. Is that normal? She described the degree of damage as "mild."

Marsh scale is what they use in the lab to measure the amount of damage to the villi. The person who examines the tissue from the biopsy will then write a report about the findings. My GI didn't know where my damage fell on the Marsh scale, because they didn't tell her, she just knew there was damage.