Six Month Followup

[Chuck1004]

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!

[GottaSki]

I can tell you that my ALT was only slightly elevated at diagnosis - low 40s with 0-35 range. At six months it had not lowered, but was in the twenties after a year and has remained there for the past two years.

My tTG IgA had dropped from positive to 6 (3 months) and 3 (6 months).

From what I understand the elevated liver enzymes is your liver working overtime to help clear waste. Made sense to me that mine was elevated with the stress my body was under. I would certainly ask your doctor what else could cause elevated liver enzymes.

As far as your villi not being damaged at diagnosis - that is a very good thing - it can mean that you had not had active Celiac Disease for a long period of time. Those of us with severe to total villi atrophy can take years to heal. Catching Celiac Disease before severe damage sounds like a very good thing to me.

Since the Celiac diagnosis was a surprise to you - have you noticed any improvements in your health during the past six months that you didn't expect?

[Chuck1004]

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!

[GottaSki]

Hi Chuck-

I completely understand why you would question the dx without symptoms. It would be hard to not question it. I can only tell you how much damage gluten can do to a person with Celiac Disease - from this side of the fence you are fortunate to avoid the complications of Celiac. I have read that some folks that where symptom free prior to diagnosis did develop severe reactions to gluten once removed for some time - but I would not count on developing this early warning detection system or testing it

Autoimmune diseases do often run together. Many people with one develop other - my daughter has been dx'd with five! Removing gluten improved ALL of them in her case. You won't necessarily develop another disorder, but it is important to be aware of it. So I say your best path is to remain completely gluten-free and watch the annual blood work - perhaps more often than annual while watching the liver. With no symptoms an annual celiac panel is important to be sure gluten doesn't sneak in with cross contamination or other sources.

Stay healthy!

re-read my post -- if it is not clear -- I have no doubt that you have Celiac Disease based on your blood work and biopsy result. I do believe you were fortunate to have been diagnosed before you had severe damage. Celiac can trigger at any point in one's life, so it is not strange to have found it while looking for something else. Your normal tTG IgA indicates you are doing a good job keeping the gluten out of your diet. You may never have a positive antibody test again - that is the goal - once you remove gluten there is no reason for your body to produce the antibodies.

[Chuck1004]

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!

[nvsmom]

It looks like you're doing a great job staying gluten-free. I hope my TTG tests get low like that.

[MitziG]

I think your dx was accurate. You were fortunate that it was caught very early in the disease, before villous damage occurred. Basically, the anitbodies were there, the lymphocytes were built up, the battle was about to begin....

Because you didn't have damage to your villi yet, your numbers dropped quickly, which is good. I think once the body is in full attack mode it takes a bit longer for it to stop producing antibodies.