Chronically swollen lymph nodes, connections to Celiac, and CT scans.

[RDLiberty]

So I've had swollen lymph nodes in my head and neck for years, in fact getting scared about it and having an ultrasound to check them last year is what resulted in discovering I had Hoshimotos & thyroid cancer. The endocrinologist who now monitors my thyroid replacement following surgery is the reason I found out about my celiac, as she ran the blood test as part of her full workup.

I have had 2 CT scans on my head and neck for the swollen lymph nodes, they were normal and just part of my other auto-immune issues (type 1 diabetes, Hoshimotos) according to the oncologist/hematologist I went to in April of this year. Problem is, at the time I didn't know I had Celiac, so I didn't bring that up with him obviously. He reviewed the latest CT scan and said it looked fine and not to worry at the time.

But now I'm scared because I've read how Celiac increases risk of lymphomas and wondering if I need to have further testing done. The CT of my head and neck was okay, but should I have an abdominal CT scan done?

Also, the nodes in my head and neck seem to be a little harder today and a couple days ago I was glutened in a big way, so that's what got me wondering about the connections between the celiac and the nodes.

Should I be concerned, should I get more CT scans done, or should I just trust that the head and neck CT scans were normal, continue with my gluten free diet, and relax? How many people have swollen lymph nodes chronically here, without having lymphoma? I'm just kind of spiraling now I guess. Thanks.

 

[Scott Adams]

I think your concerns are genuine, and I think you should bring this up with your doctors to see what tests make sense. Did you get an endoscope/biopsy when you got your celiac disease diagnosis? 

Note that the risk of cancer for those with celiac disease is still fairly small overall, but I think given your history it makes sense to follow up on this.

[RDLiberty]

2 minutes ago, Scott Adams said:

I think your concerns are genuine, and I think you should bring this up with your doctors to see what tests make sense. Did you get an endoscope/biopsy when you got your celiac disease diagnosis? 

Note that the risk of cancer for those with celiac disease is still fairly small overall, but I think given your history it makes sense to follow up on this.

I have not had an endoscope/biopsy, as I haven't been able to find a dr. I feel is genuinely versed in Celiac. I was planning on speaking to my endocrinologist at my next appointment (Nov), to see if she has any good GI doctors she recommends for her celiac diagnosed patients.

I have been at lose ends, really, because I don't know how strict I need to be with everything (cross contamination wise and such).

Plus, I thought that since my head and neck CT scans have all been normal, I was safe, but now I'm scared again. I mean, my head and neck lymph nodes look normal, but is that enough?

[Scott Adams]

For those with diagnosed celiac disease avoiding 100% of gluten is the only way to go.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[RDLiberty]

21 minutes ago, Scott Adams said:

For those with diagnosed celiac disease avoiding 100% of gluten is the only way to go.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

Thank you.

It's difficult because I'm in a shared gluten/gluten free house, as well as having multiple pets who eat gluten containing kibbles, so it's extremely nervewracking worrying about contamination.

I have been taking the Glidian-X supplement with family meals, but I'm considering taking it with every major meal that requires dishes/utensils, since I'm so scared of CC.