Is It Common For Doctors To Think A Young Celiac Adult Has Cancer?

[shiffy k]

I absolutely adore my gastroenterologist. He is very dedicated to my well being. Unfortunately,I feel that at nearly every appointment that we have he always ends on the note of the possibility of lymphoma. He has a lot of diagnostic appointments for blood work and some barium imaging studies that he has me scheduled for over the next few months that are primarily to r/o cancer. Is this a common fear among celiac patients or should I be concerned? (I am already concerned actually I am just trying to see if this is common practice)

Thanks Kortney

[kareng]

Did you ask him why he is doing all this? This is not the normal follow- up for compliant Celiac patients. Are you having additional problems?

[shiffy k]

I asked my doctor and his response was that in cases similar to my case it is not uncommon to find lymphoma. (Celiac is my only dx at this point) He said it was a precautionary measure and used to be done on all celiac patients similar to me in age at time of dx (I'm only 23). He said ideal diagnosis was in children. I found it unsettling that he has me scheduled for a barium test (small bowel only) a week after our endoscopy follow up appointment. He also made a note of mentioning that my biopsies showed immense inflammation in my intestinal lining. I didn't think that this was a normal course of action. I'm wondering if the inflammation he saw has him worried about finding tumors in my small intestines, but his concerns definitely have me worried. I cannot find anything about this when I Google aside from a heightened risk for cancer when you have celiac. I am really scared, and have nobody to tell my fears to because I don't want to worry my husband or other family members. They are just as worried as me and keep questioning if I will be ok. All I can do is smile and say I hope so. I am just wondering about the inflammation. =(

[kareng]

I asked my doctor and his response was that in cases similar to my case it is not uncommon to find lymphoma. (Celiac is my only dx at this point) He said it was a precautionary measure and used to be done on all celiac patients similar to me in age at time of dx (I'm only 23). He said ideal diagnosis was in children. I found it unsettling that he has me scheduled for a barium test (small bowel only) a week after our endoscopy follow up appointment. He also made a note of mentioning that my biopsies showed immense inflammation in my intestinal lining. I didn't think that this was a normal course of action. I'm wondering if the inflammation he saw has him worried about finding tumors in my small intestines, but his concerns definitely have me worried. I cannot find anything about this when I Google aside from a heightened risk for cancer when you have celiac. I am really scared, and have nobody to tell my fears to because I don't want to worry my husband or other family members. They are just as worried as me and keep questioning if I will be ok. All I can do is smile and say I hope so. I am just wondering about the inflammation. =(

So how long have you been gluten-free? It isn't real common to do a follow- up endoscopy if you aren't having any issues.

[kareng]

Open Original Shared Link

"Am I still at risk for developing intestinal/stomach cancer even after I’ve been diagnosed with celiac disease and switched to gluten-free diet?

The risk for intestinal cancer in celiac patients is elevated, especially in the first year after diagnosis, as a result of the previous time eating gluten. Once on a gluten-free diet for a year or more, the risk returns to normal."

[shiffy k]

June 29 I was diagnosed with celiac & when I went gluten free. My endoscopy was the 25 of June. He made this appointment after he did my endoscopy. He hadn't mentioned the appointment but the ladies in recovery told us that he needed to see me again and scheduled me for the appointment that I went to yesterday (July 29).

[ravenwoodglass]

Your doctor may just be a very cautious doctor who wants to make sure that you are lymphoma free. Do make sure that your doctor has prescribed gluten free barium for the test. Not all is gluten free. You may want to ask your doctor if he does this routinely or if he saw something in either your blood work or the first endo that is making him want to do these tests.

While we do have an increased risk of cancer the longer we are undiagnosed I don't think it is all that common. There are quite a few people on the board, including myself, who went decades undiagnosed and are cancer free. Celiac also does not always present in childhood. It can be triggered at any time even in someone who is elderly. 

try not to worry IMHO (and I am not a medical professional) the chances of your having lymphoma are likely not great.

[UtahCeliacGuy]

My doctor checked me for Lymphoma immediately after I was diagnosed as well because of my severely low energy, and probably some weird stuff in my bloodwork. I wouldn't say it is too out of the ordinary after a Celiac diagnosis.