higher risks of lymphoma in people with celiac disease

[MADMOM]

i was just reading the articles relating celiac disease to higher risks of lymphomas both TCell and Non Hodgkins and it terrified me - i thought that by eating gluten-free and maintaining this lifestyle the small intestine would heal and keep inflammation down - Although most of the studies show the risk to be higher it also says it’s not sort of definite - what say you? im 14 months gluten-free and feeling great - other than a few hiccups with contamination which were very mild my last bloodwork was almost perfect - i’ve gained 15 pounds which wasn’t what i expected but comes with healing - but overall i am more energized and look and feel better - im gonna do follow up bloodwork soon and plan on an endoscopy late summer - to see how much i’ve healed - these articles scare me 

[trents]

Those stats must be taken in the context of total population. For example, to say someone is 3x more likely than people in the general population to develop some disease because they have a certain predisposing medical condition does not mean they are likely to get the disease if the incidence of that disease in the general population is already very small.

[MADMOM]

🙏🏻❤️i hope not - if it’s one thing that terrifies me it’s getting the c word!  Anybody that u know with Celiac has been doing so well lost dx while eating gluten-free so reading those articles made me cringe 

[trents]

"Anybody that u know with Celiac has been doing so well lost dx while eating gluten-free"

Say what?

[MADMOM]

omg sorry typo i mean anybody i know with celiac that has been eating gluten-free has been doing very well health wise- 

[trents]

15 minutes ago, MADMOM said:

omg sorry typo i mean anybody i know with celiac that has been eating gluten-free has been doing very well health wise- 

Okay, got it now! And you are correct. Bowel cancer is actually not common among celiacs, just more common than the general population.

[MADMOM]

my anxiety shot through the roof reading those articles!  thanks for the reply 

[RMJ]

4 hours ago, MADMOM said:

i was just reading the articles relating celiac disease to higher risks of lymphomas both TCell and Non Hodgkins and it terrified me - i thought that by eating gluten-free and maintaining this lifestyle the small intestine would heal and keep inflammation down - Although most of the studies show the risk to be higher it also says it’s not sort of definite - what say you? im 14 months gluten-free and feeling great - other than a few hiccups with contamination which were very mild my last bloodwork was almost perfect - i’ve gained 15 pounds which wasn’t what i expected but comes with healing - but overall i am more energized and look and feel better - im gonna do follow up bloodwork soon and plan on an endoscopy late summer - to see how much i’ve healed - these articles scare me 

The risk is increased in those with active celiac disease but doubling or tripling a tiny risk is still a tiny risk. The risk decreases once the gastrointestinal tract has healed. Here is a good article:

Celiac disease and lymphoma

[AlwaysLearning]

Before I say this, I want to state for the record that I whole-heartedly agree with Trents that a higher risk when the risk is already very small is not an area of concern.

I have not been able to convince my mom to get tested for celiac or to go gluten free, despite having a ton of symptoms of autoimmune disease. But I did talk her into going gluten light when she first started testing as having early indications of lymphoma. I can only hope that at least lowering her gluten consumption will continue to keep her from crossing over into a full-blown diagnosis. She's in her 70s and has been walking along the edge for years now.

 

[MADMOM]

6 minutes ago, AlwaysLearning said:

Before I say this, I want to state for the record that I whole-heartedly agree with Trents that a higher risk when the risk is already very small is not an area of concern.

I have not been able to convince my mom to get tested for celiac or to go gluten free, despite having a ton of symptoms of autoimmune disease. But I did talk her into going gluten light when she first started testing as having early indications of lymphoma. I can only hope that at least lowering her gluten consumption will continue to keep her from crossing over into a full-blown diagnosis. She's in her 70s and has been walking along the edge for years now.

 

has she stayed stable or gotten better? 

[AlwaysLearning]

I don't see her numbers, nor would I know what they mean, but from what she has said, I think she has stayed fairly stable, kind of like being pre-diabetic, sometimes a little better, sometimes a little worse. 

Knowing my mom and the way her brain works (how stubborn she can be when it comes to refusing that there could be anything wrong), I suspect that when her numbers get worse, it scares her and she does better at avoiding gluten, and when the numbers get better, she takes more risks. But again, I don't know for certain. This is just the feeling I get from what little she tells me, but she only shares enough to get sympathy. 

[europyia]

Before I was diagnosed,  I went through a cancer scare! I had unexplained weight loss, night sweats, extreme fatigue, lower abdominal pain. So I went in thinking I was in peri menopause.  I asked the doc to check my hormone levels.

Next thing I know, I'm being called back in for more blood work. Then sent off to an Oncologist!!! I was freaking out! In my thirties, two young kids and a busy exotic wildlife caretaker career.

They send me for CT scans w/ contrast, then even a Bone Marrow Biopsy! By this point, they told me it could be Lymphoma. All my blood work was pointing that direction. I was sent to a second Oncologist/ Hematologist that told me I had ZERO IRON stores in my bone marrow. My Ferritin was at 4. 

I began Iron Infusions just to start feeling better. After the first one, my blood work straightened back out. No one could explain it. But the doctor was thrilled. I continued getting Infusions for a few years.

The docs agreed I should have an Ablation to stop my heavy periods. So I went in for that. My iron continued to deplete but at slower pace. Eventually I was diagnosed with Celiac.

My GI doc says my Endoscopy was the worst she's ever seen. So it is true. I was on the precipice. Thank God my body turned around!