lymphoma

[scrowley]

I went for my first GI appt today after diagnosis and entocort treatment in august.
He of course thinks food has nothing to do with it.
he did say that if you leave the inflammation untreated there is a chance of developing lymphoma.
this was the first time i heard this.
i told him i wanted to try diet and no more drugs for now and he was cool with that.
sheila

[tex]

he did say that if you leave the inflammation untreated there is a chance of developing lymphoma.

Your doctor is trying to use scare tactics to get your attention. Yes, there is a chance of developing lymphoma. Everyone in the general population has a tiny statistical chance of developing lymphoma. Untreated celiacs have a slightly elevated risk of developing non-Hodgkin's lymphoma. But, the risk is so slight to begin with, that even when it's slightly increased, (as in the case of untreated celiac disease), the risk is still extremely low - not worth losing any sleep over.

However, that tiny risk of developing non-Hodgkin's lymphoma is one of the reasons why most of us choose to treat our disease with diet changes, because eliminating the foods that cause the inflammation is the only way to truly eliminate the increased risk of developing non-Hodgkin's lymphoma. Anti-inflammatory drugs can suppress the inflammation, but they can never completely eliminate it, if we continue to generate new inflammation by eating inflammatory foods.

Good for him for accepting that you want to want to try diet changes first. I'll bet he was thinking, as you went out the door, "She'll be back, to beg for a prescription". I sure hope that you'll be able to disappoint him.

Tex

[scrowley]

he actually said to me, i think you will disapear and i wont hear from you again, he asked me to keep in touch at least for the first year.
i did tell him since you guys have no idea what causes this, why discount diet when it seems to help people when they change it, he couldnt argue that one.

[JLH]

[karenswans]

I didn't know about the non-hodgkins lymphoma link. My father had Non-Hodgkins Lymphoma. I wonder if he is who I inherited my food sensitivites from?

[Noodler]

I had never heard of or seen details of the link between lymphocytic enterocolitis (I've got particularly massive numbers of lymphocytes in my duodenum) and full-blown lymphoma. I did ask my GI doc about lymphoma when I asked if the lymphocytes could be coming from a lymph gland problem but he just chuckled and said very briefly that they weren't related.

Does anyone have a link to the data on increased lymphoma risk? I've heard it increases with coeliac but they don't think I have that.

[tex]

It's a low risk, associated with T-cell autoimmune reactions, and the risk subsides with the passage of time, if the symptoms of the disease are properly treated. The inflammation that causes MC, (CC, LC, ME, and LE), is also due primarily to T-cell infiltration, similar to celiac disease.

http://www.ncbi.nlm.nih.gov/pubmed/21755296

Tex

[Noodler]

Thanks Tex. You have put my mind pretty much to rest. I can see a correlation with celiac but is there a similar one with LC or is it the same risk and susceptibility?

I've been gluten-free since August but got a lot of other food allergies with sky-high IgE.

Al

[tex]

Al,

MC is assumed to carry the same basic risk as celiac disease, since the reactions are so similar, (on a cellular basis). The risk is associated with gluten-sensitivity, and I'm not aware of any research that examined any risk associated with other food-sensitivities, but I would assume that other food-sensitivities would fall into the same category, (provided that they result in a T-cell response).

I think it's worth noting, though, that this board has been in operation for over 6 years, now, and we have accumulated a thousand members, and to date, at least, no one has reported that they they have developed lymphoma. Of course, our long-term remission rates on this board are quite high, since most people who come here develop a treatment program that works for them. I have no idea what the prognosis might be for those who go the medical route, instead, since many patients apparently never get their symptoms under control, if they strictly follow their doctor's advice.

Tex