Jump to content

  • 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):

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

shiffy k

By shiffy k
in Related Issues & Disorders

Recommended Posts

shiffy k Newbie
shiffy k
Posted

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

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

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 Newbie
shiffy k
Posted
  • Author

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 Grand Master
kareng
Posted

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 Grand Master
kareng
Posted

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 Newbie
shiffy k
Posted
  • Author

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 Mentor
ravenwoodglass
Posted

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.

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

Celiac.com Sponsor (A8-M):


UtahCeliacGuy Newbie
UtahCeliacGuy
Posted

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.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Additional Concerns
      1

      This Common Blood Pressure Drug Can Mimic Celiac Disease Symptoms

      Dang. I had a moment of hope that I could change my BP med and get off the gluten-free diet. Nope. More seriously, I hadn't seen this articles about this phenomenon before. This is one of the possible answers for people who post here about having celiac symptoms (including biopsy) but normal IgA levels, especially if they are saying that diet isn't helping...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Recipes & Cooking Tips
      2

      Zaalouk moroccan eggplant salad

      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
    3. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Recipes & Cooking Tips
      2

      Zaalouk moroccan eggplant salad

      I love Middle Eastern food and eggplant, and here is another version we shared some time back:
    4. Scott Adams
      - Scott Adams replied to Richard Rusnak's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      I was diagnosed with celiac 15 years ago.

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      357

      Terrible Neurological Symptoms

      This may not be the cause, it's pure speculation on my part, but for 10-15 years I had a tingling/burning/electric-like shock sensation that emanated from my right-neck upward across the right-side of my head. I was worried about having a stroke or something so got all sorts of tests done, including an MRI, which found not much--only a minor degenerative...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,061
    • Most Online (within 30 mins)
      10,442
    Francisco1007
    Newest Member
    Francisco1007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Zaalouk moroccan eggplant salad

      By Aretaeus Cappadocia · Posted

      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
    • Scott Adams
      Zaalouk moroccan eggplant salad

      By Scott Adams · Posted

      I love Middle Eastern food and eggplant, and here is another version we shared some time back:  
    • Scott Adams
      I was diagnosed with celiac 15 years ago.

      By Scott Adams · Posted

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      This may not be the cause, it's pure speculation on my part, but for 10-15 years I had a tingling/burning/electric-like shock sensation that emanated from my right-neck upward across the right-side of my head. I was worried about having a stroke or something so got all sorts of tests done, including an MRI, which found not much--only a minor degenerative disk in my neck--which I just accepted as the cause. Fast forward to when I was ~45 and I was hit with shingles in the EXACT place that this sensation would travel--I ended up with a very painful case of shingles that felt like the right-side of my head had been set on fire, and had the blistering and pain that ran along the exact path of nerves that I had felt this sensation travel along for the prior 10-15 years. For me, that time period was a shingles pre-cursor, and all those feelings were likely inflammation in my nerves. Needless to say I've not had this since getting my shingles vaccines at 50.  Your situation could very well be something else, but I just wanted to mention this possibility because your symptoms sound similar to what I experienced. I'm not sure if you're in the age range to get a shingles vaccine, but it may be something to consider.
    • trents
      I was diagnosed with celiac 15 years ago.

      By trents · Posted

      Welcome to the celiac.com community, @Richard Rusnak! The short answer is "No". Barley is a gluten-containing grain. The three gluten-containing grains are wheat, barley and rye.  Barley and rye contain less gluten than wheat but still should be avoided. Understand that smaller amounts of gluten may not produce a noticeable reaction in so far as symptoms go, but they still may be causing some inflammation in the gut. Products derived from gluten-containing grains should also be avoided, for instance malt and malt flavoring. 
×
×
  • Create New...