Overwhelmed by This Possibility

[Hchapman95]

I'm new here so please forgive me if I'm in the wrong forum.

But I could use some clarity and input.. So I'll try to make my story brief as possible?

So about 8 months ago I began itching uncontrollably and after going to the Dr for labs she found my liver enzymes were 5x what they should be and was referred to a gastro Dr.

 Gastrointestinal Dr ran multiple scans, blood work over the next 2 months and referred me to teaching hospital with a " tumor board" apparently I had a mass within my bile ducts that was blocking bile from liver. Was given a grim diagnosis of rare cancer and told would be dead within the year. Then had an endoscopy done to get tissue of the mass and for some reason it had partially resolved and was no longer blocking bile duct. At this point they could not find and cancerous cells. So fast forward 3 months I'm still in pain and had another endoscopy and the biopsy taken showed high possibility of celiacs. 

The blood work was negative for celiac but after the grim cancerous diagnosis I had been unable to eat for 2 weeks or so and so I'm not sure if that would have skewed the labs?. How could the biopsy show high possibility of celiac?  And had anyone heard of celiac causing inflammation in the bile ducts? 

I have been gluten-free for 6 weeks and have been feeling remarkably better pain in the upper right quadrant is less, and migraines ( I have had for my whole life) have lessened. 

So all this to say I don't understand celiacs and how to explain it to family. Or how all of a sudden this happens. Ask if anyone can shed any insight I would appreciate it.

Blessings 

 

[Jmg]

Hello and welcome

Firstly, don't worry about it but for ease your post (and hopefully my reply) will probably be moved to its own thread. That will make it easier for others to see it and reply and also help Galaxy's own thread here on track and making sense. 

1 hour ago, Hchapman95 said:

The blood work was negative for celiac but after the grim cancerous diagnosis I had been unable to eat for 2 weeks or so and so I'm not sure if that would have skewed the labs?.

The antibodies that the celiac tests look for can drop very quickly, so... maybe? Celiac is difficult to test for, there are different tests and sometimes someone doesnt test on one but does on the other. If you can get a copy of the tests and post it here the community may be able to help explain the results. 

1 hour ago, Hchapman95 said:

How could the biopsy show high possibility of celiac?

It may have shown Open Original Shared Link, the little tendrils in your intestine that help you extract nutrients from your food. Celiac is one, but not the only, way in which they can get damaged leading to a vast number of potential symptoms and further making diagnosis a tricky proposition.

1 hour ago, Hchapman95 said:

And had anyone heard of celiac causing inflammation in the bile ducts?

Definitely, there's a connection. Here's a page that explains it in detail:

Open Original Shared Link

1 hour ago, Hchapman95 said:

I have been gluten-free for 6 weeks and have been feeling remarkably better pain in the upper right quadrant is less, and migraines ( I have had for my whole life) have lessened. 

Fantastic  It sounds as if your doctors were happy to diagnose you on the basis of the endoscopy? It may be then that you've found your answer. I hope so, you've clearly had a rotten and very scary time.  I'm sure with the positive reaction to the diet you want to go on and get healthy, but I would only add that you should discuss this with your doctors, because they may want to exclude other potential causes if they've not confirmed celiac at this point.

Check out the advice for newly diagnosed here:

To your family I'd simply say that celiac is a disease of the autoimmune system, the part of our body that fights diseases and keeps us safe. In celiac people the autoimmune system see's the gluten protein found in wheat, barley, or rye grains as a threat to the system and it produces antibodies to attack it and in doing so attacks it's own body as well. It's genetic in component so close family members should consider a test if they have any of the many symptoms. There's roughly 1 person in 100 with celiac but most of them don't know it and are risking getting or staying sick by not finding out. 

There's further info for them and you here:

https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/

I'm going to ask a mod to move your post and my reply to a new thread, but wanted to give you an answer first

The good news is you've found a great site and there will be lots of support for you here. You've also got 'lucky' in that if you're going to have an autoimmune condition, celiac is a good one  Most react really well to the gluten free diet and you will hopefully have much more healing to come!

Best wishes

Matt

[Hchapman95]

Thanks Matt

I appreciate your response and assistance getting " moved to my own thread" thanks so much.

I do have the results of my labs they took and am unsure which labs are which so I will try to attach them and perhaps someone can help me decode them.?

 

Thanks again

Heidi

 

[RMJ]

Those labs do not look like celiac tests.  The first three MIGHT just be measuring total antibody levels of the three different classes, but on the very right it has IgA Serp (Serp cut off?) and I don't know what the Serp is referring to.  

The first column is the test name, the second column your value, the third column the units of measure, the fourth column the normal range.  The first one is a tiny bit low, all the rest in the normal range.

 

[Hchapman95]

Oh I'm sorry I didn't notice that the picture cut off. Let me attach a better one.

These are the only labs that I have had done that have IgG, IgM or igA in the name. These tests were completed when the Dr was looking for what he called " autoimmune disease" to explain my liver and bile duct problems. Unfortunately if these aren't the celiac tests I have been Gluten free for 6 weeks so to my understanding it would be pointless to request the tests now. 

Thanks for taking a look and giving me any insight that you may have.

[cyclinglady]

You did not have celiac testing done.  ☹️

Instead,  your doctor checked your immune system.  This explains it simply.

Open Original Shared Link

 In the case of celiac disease, you are slight deficient in IgA, but for celiac disease it is used as a control test to determine if celiac testing is valid.  

Time to buy or get to the library to research celiac disease.  Read all the good links given to you earlier. 

[RMJ]

How frustrating that they did not do blood tests for celiac!  

Serpl mcnc is mass concentration in serum or plasma.  So as cycling lady said,  just checking your immune system.