Chuck1004

I'm sorry to hear about your diagnosis but I'm hoping it didn't show any precancerous cells?  I have a friend who has it as well and it's regular endoscopies.  From what I read few people who have it see it develop into anything.   Since I was told I was not a celiac maybe I have it after all!

It's funny you say that.  I know of at least one celiac who eats gluten free on Mondays, Wednesdays and Fridays.   I suppose that's like being allergic to peanuts but partaking once or twice a week??  I've only purposefully cheated a couple of times in six years.  Knowing I was non-symptomatic and that any contamination would essentially fire up my immune system anyway, if I was out of the country or on vacation I would confine my cheating to the same timespan, get it out of my system, and then get back on the wagon.  I had actually been nervous because a restaurant I frequented was apparently not as contamination free as I thought, but luckily, no harm done.

I suppose it makes sense that it would heal fully given how little damage I had in the first place!

That’s very helpful.  As I wasn’t able to talk to the doctor it turned into a game of telephone and all I got was “no celiac.”  I was at the very early stages then, it looks like, and have maintained the diet, so that answers my question.  As I read the initial biopsy results as almost a diagnosis of exclusion and never had the genetic test I was curious how to interpret the message.

Hi all,

Sort of a crazy question.  Six years ago, I was sent to a GI specialist to followup on an elevated liver enzyme.  It turned out to be simple fatty liver, although the specialist ordered a battery of tests that were suggestive of celiac disease.  I was non-symptomatic at the time, followed up with an endoscopy and biopsy, was diagnosed as a celiac, followed up six months later after adopting a gluten free diet, had normal blood labs, and was told to maintain it indefinitely.

Six years later, I just had a followup endoscopy from my new GI doc to followup on the celiac progression.  They thought I had Barrett's esophagus after the endoscope and the office called at 4:55 on Friday with my test results.  It was only the secretary left and she was reading from their letter that was being sent out to me.  I didn't have Barrett's esophagus and everything else looked fine, and I asked her how the celiac disease read.  She was a bit over the place, but she said, "It says no celiac."  I told her I was diagnosed six years ago.  She said it looked like there was a word missing in the letter and she'd have to followup with the doctor on Monday.

So I'm half wondering if the point of the letter was since adopting the gluten free diet and maintaining it for six years, there's no active traces of damage from celiac disease, or if it's possible I was misdiagnosed all those years ago, especially given I'm non-symptomatic.  At the very least, I have the weekend to fantasize about going back to my favorite pizza place!

These were the relevant results I received six years ago.  Could anyone give guidance as to how they read, and especially how your followup endoscopies may have gone?

January 2012-

February 2012 - biopsy results

FINAL PATHOLOGIC DIAGNOSIS:
A. DUODENUM BIOPSY:
Duodenal mucosa with increased intraepithelial lymphocytes and normal villous
architecture, (see note).
Note: A CD3 immunostain demonstrates increased intraepithelial lymphocytes
throughout most of the architecturally preserved villi. Although non-specific,
in conjunction with the known positive serum IgA TTG, the findings support a
diagnosis of celiac disease.

September 2012, April 2013 - lab followup

Very good point regarding not knowing the true state of damage! Any recommendations for restaurants while I'm there? :-)

Well if you have celiac and no damage to your villi , wouldn't you want to keep it that way? Every time you eat some Gluten your risking your health.  Do you have a test done every time you eat gluten to see if there is damage? That is like crazy talk!! The risk you take is crazy!! Sounds like your mind is set that you will taste stuff and cook on stuff that may be contaminated ... but you can always ask about gluten free meals at restaurants. I just don't understand this kind of stuff. It is way beyond my thinking capability. Hope you enjoy your trip. I have always wanted to go to England

That was the question i was looking for feedback on.  I had been eating gluten every day for years and years and stopped when I had no villi damage.  Aside from some very infrequent contamination, I've been very diligent.  What I was throwing out there was how much non-reversible damage could be done with brief contamination?  Put another way, had I been diagnosed a week later initially, would permanent damage had been done?  My mind's not made up.

And thank you!  Looking forward to it!

As an aside, I was positively glutened once at work.  A co-worker decided to use the coffee strainer for her pasta, believe it or not.  I cheated for a couple of meals last October over a 48 hour time period while on vacation, and ate a snack that possibly could have been contaminated last month after a surgery.  Other than that, I'm incredibly diligent about it, but in each event, I never felt sick.  I take what you say very seriously.  I treat it that if you're going to cheat a little bit, you're doing as much damage as if you ate anything in the world you wanted.  

I guess what I don't hear discussed often and was looking for input on was this.  For a person with no detectable villi damage who is diagnosed celiac presumably in the very early stages, who maintains a strict gluten free diet and is glutened for brief, isolated periods with no manifestations who then resumes a strict gluten free diet for extended periods, what is the likelihood for cumulative, non-reversible damage?  I have to imagine that in the past eighteen months have consumed less gluten than I would have should my original diagnosis had been made a day later.

I'm going to London and Wales.  We're renting an apartment so I have every hope that many of our meals will be as gluten free as possible.  (I can't guarantee how safe the pots and pans are...)  There just may be isolated periods where I want to sample something.

Contamination not continuation.

Hi all,

In trying to determine the cause of a slightly elevated liver enzyme 18 months ago, I discovered I was a celiac. I had not experienced any symptoms to that point and the biopsy showed white blood cells in the area but no damage to the villi. I suspect I caught it very early.

As my wife is slightly gluten intolerent, we went all out eating gluten free and are ridiculously careful about cross contamination, especially considering I wouldn't know if I was contaminated.

In terms of cheating on my diet, given the condition of my villi and lack of symptoms, I set the bar very high. I have only cheated the day after kidney stone surgery (I suspect some continuation with a snack I was craving) and while on vacation (two day period and only for a couple of meals.). Otherwise, I will drive 50 miles for a gluten free meal over risking it.

I plan to be vacationing out of the country for two weeks this month and plan to relax my diet somewhat out of necessity. I recognize many of you see this as poisoning and could never do so yourselves, but my shoutout question is how much long term damage could inconceivably do with mild gluten exposure over a two week period. We plan to home cook most of our meals but it will be much more difficult to be as careful as we are used to being.

Thank you so much for that, Lisa!

I've been incredibly diligent about keeping any trace of gluten out of my foods because I am concerned about doing more damage that I just don't want to miss the possibility that it was anything else. Thanks for putting my mind at ease! I have a fatty liver diagnosis and am a carrier for Alpha 1 antitrypsin deficiency so I think there are enough liver variables to cause what is admittedly, a very slight uptick in one enzyme. I'll see what they say this week.

Thanks again!

Thanks for replying Lisa!

Just to ask the crazy-man question I was dreading with my results this morning - given the biopsy results - it couldn't be misdiagnosis and that I had some other type of autoimmune disease, in your knowledge? With the lack of symptoms and now that the ttg iga was normal I was freaking out a bit.

That's great that your levels normalized after a year! I honestly can say I haven't noticed a difference in the past six months. I have been incredibly careful about gluten intake and I can't point to any point where I've been glutened, so it's possible if I'd been a bit less careful I might have seriously felt it by this point!

Hi all -

I posted on these boards six months ago when diagnosed with Celiac. In preparation for my six month followup I got the blood work done in advance of the appointment and I have a concern as I sit here a week out. I'm hoping you can help!

First of all, I went to the GI doc initially because of an elevated ALT enzyme level. They did the Celiac test on a whim. I was shocked when they told me I had it.

These were my results from six months ago:

Iga was 261, with normal range 69-309.

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

Ttg igg was 4.62 and negative.

AMA was negative.

SMA was negative.

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

Fatty liver.

ALT to 55. Normal range 0-55 at that hospital, but my hospital's range 0-40. I've been as high as 73. This is what brought me to them.

Antitrypsin deficiency carrier.

They did a biopsy and here were the results there.

"Final Pathologic Diagnosis:

A. Duodenum Biopsy - Duodenal mucosa with increased intraepithelial lymphocytes and normal villous architecture; (see note)

Note: A CD3 immunostain demonstrates increased intraepithelial lymphocytes throughout most of the architecturally preserve villi. Although non-specific, in conjunction with the known positive serum IgA TTG, the findings support a diagnosis of celiac disease.

Gross Description - Received in formalin, is .4 x .3 x.1 cm aggregate of tissue fragments. Entirely in A1."

And so we throw out the pots and pans, bury the toaster in the back yard, and I've made it my goal in life not to come into contact with a molecule of gluten anything for the past six months. These are the blood test results I get back this week in preparation for my appointment.

Iga was 239, with normal range 66-436.

Ttg iga was <1.2, with normal of <4.

Ttg igg was 4.62 and negative.

ALT to 54. Normal range 0-35 at that hospital.

So of course, with the ALT still high and the TTG iga at normal after six months, I am hoping I was not misdiagnosed with Celiac six months ago. Is it normal for that level to drop so suddenly and can the ALT still remain elevated? Any words of wisdom would be most helpful!

I had my appointment today and the doctor's first words after reviewing my lab results were "you definitely have celiac disease." I now have an endoscopy scheduled to make sure nothing else is going on, a DEXA scan and additional labs ordered (vitamins, iron recheck, and some others).

He gave me copies of my labs:

tTG-IgG Ab - 42

Endomysial IgA - positive

Endomysial Ab - 1:10

Iron - 40

Saturation 9%

I'm confident I'm on the right path to healing.

Your TTY levels are similar to mine. I believe the endomysial reading is the genetic test for Celiac Disease (I did not have that test) but at the very least is as clear cut and accurate as you can possibly get. Best of luck on your endoscopy (It is a snap) and let us know your results!

I recently had a positive blood test for Tissue Transglutaminase antibodies, which was reported on the test as TTG AB IGA, and my understanding is that virtually all Celiacs will have a positive hit on this particular test, but not all positive hits as necessarily Celiacs, as it can indicate other autoimmune issues. They will follow up with the endoscopy to confirm the finding and report back on the degree of damage.

In my case it was the GI doc who performed the test and later did the endoscopy, so I would imagine the GI specialist will schedule you for the endoscopy and do other followup bloodwork.

Hi Christine,

Which specific blood tests did you have?

Thank you everybody for the information. That was exactly what I was looking for!

I'm about to go and restock the shelves with gluten free products so I'm not walking around the house drooling. Plenty of gluten free wraps and buns so I can at least look at the local burger joint without tearing up.

Hi all,

In terms of the DH, it was something my wife looked at when she was trying to figure out her skin issues. When she looked at pictures of DH, it looked nothing like what she had, which appeared more like eczema, although I'm sure that's not the most reliable way of doing things! Matters were made worse for her because before we got to a dermatologist, her PCP put her on a sulfa-based cream for a burn on her arm that she had a horrible allergic reaction to (we thought it was an infection), and it took us a few days to realize that the growing rash was the size and shape of her bandage.

We're going to transition into a fully gluten free house by the next couple of weeks to hopefully eliminate cross contamination, but as was said here, there's nothing we can really do about her work, for her or for me. The only saving grace is she works for Whole Foods which delves more into the gluten free areas than other bakeries or supermarkets, but unfortunately, it's not a gluten free kitchen there. Fingers crossed!

As for the cats, of course, it's not that simple. I adopted two cats last year, and a month later the cute one had an intercession and needed emergency surgery. They weren't sure if a particular allergy contributed to her belly issues so they have her on a hypoallergenic diet, which cuts down on the available options of what I can feed her.

I may decide to just live in the shed before the week is over.

Could I trouble anyone here to offer a second, and perhaps third opinion on the biopsy results I received in the mail?

And followup stupid question of the day, but do the symptoms generally follow villi damage? I wondered if the normal villi was why I might be asymptomatic.

Thanks Lisa!

My TTG IGA was 45.62, with the normal range being 0-15. My antigliadin antibodies were both normal. When that was the only result I had back, I had read online that, "TTG false positivity has been described in patients with both type I diabetes and autoimmune hepatitis. Theoretically, it can also be falsely positive in other autoimmune disease."

As I'm asymptomatic and had mildly elevated LFT/fatty liver, I was afraid it would be one of the other issues mentioned above. I guess my issue when I posted today was do I have two inconclusive results that together may mean celiac's disease or two inconclusive results that together almost certainly mean celiac disease.

Put another way, intraepithelial lymphocytes couldn't mean anything else, right?

And thank you very much!!!

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.

I can't thank everyone enough to for the feedback they provided over the past few days. It's really help me come to grips with my new diagnosis.

Speaking of, I received the results in the mail. Can I get some feedback again on specifically what it means? I asked the Doctor yesterday if there was a Marsh level for me and she indicated they didn't specifically test for that. Here's what I did receive.

Final Pathologic Diagnosis:

A. Duodenum Biopsy - Duodenal mucosa with increased intraepithelial lymphocytes and normal villous architecture; (see note)

Note: A CD3 immunostain demonstrates increased intraepithelial lymphocytes throughout most of the architecturally preserve villi. Although non-specific, in conjunction with the known positive serum IgA TTG, the findings support a diagnosis of celiac disease.

Gross Description - Received in formalin, is .4 x .3 x.1 cm aggregate of tissue fragments. Entirely in A1.

Prior to receiving the results my fear was the IgA TTG was going to point me elsewhere. Is this more conclusive than it sounds?

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."

I'm laughing because we just had the kissing question before you posted that as I am surrounded by cats! Whoops.

She eventually switched to a different lotion that she uses more frequently throughout the day and her rash and itch are both gone. A point she raised was if it was a gluten issue would she have the rash more on her hands than her legs and arms, or would that not even be a factor?

I'll propose the strip search idea tonight and hope for the best!!!!!! :-p

Thanks for the excellent replies! A concern is my wife is a pastry chef and works with flour all day long. The concern now is will she be "tracking" it home even if she doesn't use it at home? In the event she does use non-gluten free materials in the kitchen is it possible that scrubbing the heck out of the area will suffice or am I going to get contaminated if I walk anywhere near it?

Why do I see myself in a hazmat suit??? :-D