Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Polyps/tumors Of Small Intestine

debmidge

By debmidge
in Related Issues & Disorders

Recommended Posts

debmidge Rising Star
debmidge
Posted

Hi All

I am submitting this as a check to see the response to "has anyone been diagnosed with polyps of small intestine or tumor (adenocarcinoma) of small intestine, as we are told is at a higher incidence than the general population?"

And, if yes, what was the outcome?; what is/was your treatment plan? What were your symptoms before diagnosis? How are you feeling now after treatment?

I'd rather not go into the reason why I wanted to know...let's just say that I have a feeling that my husband's latest testing may show this as what is going on and I want to be prepared.

Thank you very much for any input you can give me.

Deb

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

Hi Deb,

Don't know too much about it but I do know that polyps are quite common. I have had a few removed myself with my first colonoscopy. My supervisor at work, who had a colonoscopy a few months ago, had several removed. And she doesn't even have any bowel problems, this was just a "preventative maintenance" kinda colonoscopy.....

Keep us updated thought on any answers you get back from your hubby's dr....

Have a great day!

Karen

kabowman Explorer
kabowman
Posted

Ditto...I had several removed a few years ago (at age 35). My dad has had some removed and he has no problems, unlike me. My before and after was the same...Kate

dbuhl79 Contributor
dbuhl79
Posted

My father and uncle have had these removed.They have no bowel issues, but this was just a routine colonoscopy as one reaches a certain age. The only indication I've understood, is that these polyps, require one to have a yearly colonoscopy to check for additional ones and monitor the situation. To keep on the top of possibly developing more complicated issues later (i.e. cancer). Its like women and their yearly mammogram.

Granted your husband's issue may be slightly different as I assume he has celiac disease. I would guess they'd remove any of the polyps found etc and keep an eye on him and have him come back yearly. (Based on what they find of course..) Sorry I don't have any more definite responses, hope this helps put your mind at ease a little.

llj012564 Newbie
llj012564
Posted

My Grandfather died from colon cancer , my father had had polyps removed , and one of my brothers has had them removed, both did not show cancer. My other siblings we all tested as was I ( the only one with confirmed celiac disease ) and none of us had any polyps. They tend to run in families. As someone with celiac disease we do have a higher risk of developing them but early detection of polyps can help in prevention of colon cancer so I make sure to go for my exams <_<

strack2004 Rookie
strack2004
Posted

Do colonoscopies examine the small intestine? I though this test was only for the large bowel. My husband died of carcinoid cancer which usually begins in the small intestine and travels to the liver. In 1979 liver transplants were not done as far as I know. His cancer was too far advanced anyway by the time it was diagnosed. With treatment some people live reasonably normal lives for 12-20 years. My husband had terrible diarrhea and flushing over his whole body. These were the principal symptoms. Doctors accused him of drinking because his nose was so red. I knew he wasn't drinking, but they didn't come up with the correct diagnosis until one morning he asked me if I had a hard place under my right ribs. That was tumors that had spread to his liver. This disease is very rare, but if the symptoms are similar to these, it would be good to mention this to the doctors. Perhaps now doctors are more aware of this disease. Ruth

debmidge Rising Star
debmidge
Posted
  • Author

yes, my husband has celiac (misdiagnosed for 27 years) and I am specifically looking for info about malignant polyps as they relate to the small intestine.

Strack: was your husband celiac?

The endoscopy does the upper or small intestine.

Thanks for any info anyone can give me.

deb

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

Celiac.com Sponsor (A8-M):


stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

My grandmother also died of colon cancer and some other cancers and my mother just mentioned couple of weeks ago, that she, once again, has had some polyps removed. She almost has all the symptoms i have. I'm pretty sure, she has celiacl, too. But you know, some parents always know everything better. She ignores my suggestions and doesn't get any test to rule celiac out. Oh well...

Stef

strack2004 Rookie
strack2004
Posted

Debmidge, I don't know if my husband was celiac. I rather doubt it since until the carcinoid symptoms started he always had normal bowel function. I envied him!

The diarrhea that came when the carcinoid cancer started was from , I think it was hormones, that were given off by the tumors. They also affected his heart. It took several years from the start of symptoms until he was finally diagnosed. After diagnosis he only lived 2 more years. Treatment at that time was limited to palliative measures to somewhat control the flushing and the diarrhea. There may be much more out there now. Strack

  • 13 years later...
Squishyleo Newbie
Squishyleo
Posted

My brother has Celiac and just had surgery for Carcinoid tumor in small intestine. It has spread to the lymph nodes and liver. My mother died from the same thing. I don’t know if she had Celiac but I suspect it. I also have Celiac, as does my sister, so I am looking for the best way to screen for these tumors to catch them early. I’ve heard of a blood test and a 24 hour urine test, but not sure how effective they are. 

cyclinglady Grand Master
cyclinglady
Posted
16 hours ago, Squishyleo said:

My brother has Celiac and just had surgery for Carcinoid tumor in small intestine. It has spread to the lymph nodes and liver. My mother died from the same thing. I don’t know if she had Celiac but I suspect it. I also have Celiac, as does my sister, so I am looking for the best way to screen for these tumors to catch them early. I’ve heard of a blood test and a 24 hour urine test, but not sure how effective they are. 

I am so sorry about your brother and I wish him well.  Have you all been diagnosed recently or as children?  

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. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.