Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Overwhelmed by This Possibility


Hchapman95

Recommended Posts

Hchapman95 Newbie

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 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jmg Mentor

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 :P Most react really well to the gluten free diet and you will hopefully have much more healing to come!

Best wishes

Matt

Hchapman95 Newbie

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

 

IMG_2826.PNG

RMJ Mentor

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 Newbie

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.

IMG_2827.thumb.PNG.e09fc6df0c6b65238401125f9c29dfe2.PNG

cyclinglady Grand Master

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 Mentor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,571
    • Most Online (within 30 mins)
      7,748

    Catherine OBrien
    Newest Member
    Catherine OBrien
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
    • Cat M
      Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2   0-3 is negative TTG IGG  3   0-5 is neg DGP IGA 21    20-30 is weak positive DGP IGG 4    0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.  
    • Scott Adams
      This is an interesting case. A positive tissue transglutaminase (tTG) antibody with a negative endomysial antibody (EMA) and normal duodenal histology can present a diagnostic challenge, especially in an asymptomatic patient. While the absence of villous atrophy and negative EMA suggest that the likelihood of active celiac disease is low at this time, such serological discordance may still warrant monitoring. Some individuals may be in the early stages of celiac disease, often referred to as potential celiac disease, particularly if they carry the HLA-DQ2 or DQ8 haplotypes. HLA typing can be quite helpful in this situation; a negative result would virtually rule out celiac disease, whereas a positive result may justify periodic follow-up to monitor for evolving disease. The risk of progression to overt celiac disease is not well defined but appears to be higher in children, those with a family history, or those with autoimmune conditions. In this case, routine follow-up including repeat serology and consideration of symptoms or new risk factors over time would be a reasonable and cautious approach. For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Scott Adams
      Have you tried to start a gluten-free diet since your diagnosis in 2019?
    • trents
      Welcome to celiac.com, @Wamedh Taj-Aldeen! Just curious, what is your relationship to the patient? Are you the attending physician? A medical student? A consulted physician? Was a total IGA test ordered? Some physicians are under the dated and mistaken impression that such is only necessary in young children. If total IGA is low, other IGA antibody numbers will be artificially depressed. By the way, it is not unusual to have a positive TTG-IGA and a negative EMA. Are the TTG-IGA numbers borderline high or unequivocally high? There are other diseases and medical conditions that can cause elevated TTG-IGA numbers besides celiac disease but when this is the case, the numbers are usually not dramatically elevated. It can also be the case that villous damage was patchy and affected areas were missed during the biopsy. Or, onset of celiac disease was very recent and villous atrophy has not yet progressed to the point of detectability.  We also have occasional anecdotal reports in this online community of positive antibody testing with negative histology, as you report. But we also know that gluten intolerance can manifest itself apart from enteropathy. It can damage other organ systems. Many celiacs are of the "silent" type, meaning there is an absence or a relative absence of symptoms until the disease has become advanced and there is significant damage to the villous lining or other organ systems. But to answer your questions: 1. I would definitely pursue a routine follow-up and recheck of the antibodies. And, I would order a complete celiac panel including total IGA and IGG stuff in say, six months. Sooner if symptoms manifest. 2. It is impossible to say what is the risk of the future development of over celiac disease. I refer you back to my #1 above concerning rechecking.  3. I would definitely pursue HLA DQ2/DQ8 typing as it can be used as a rule out for celiac disease, though not quite with 100% dependability. I hope my thoughts prove helpful to you.
×
×
  • Create New...