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

Untreated Celiac Disease Caused My Cancer!

zenjess1980

By zenjess1980
in Coping with Celiac Disease

Recommended Posts

zenjess1980 Contributor
zenjess1980
Posted

My blood work was positive for Celiac, after years of mis-diagnosis and nobody putting two and two together or giving me straight answers.  Thank you Google (LOL).

I went in for a Biopsy to confirm Celiac Disease.  Came out of my endoscopy with "no visual damage to your villi from Celiac, BUT, there's a mass in your duodenum. We biopsied that. It looks like Lymphoma."

The biopsy confirmed I had Cancer. Non-Hodgkin Lymphoma of the Duodenum.  The biopsies of my villi did NOT confirm Celiac Disease.

Upon further research, I found there's a high correlation between this type of Cancer and untreated Celiac. 

Has anyone had Cancer that was most likely caused by untreated Celiac?

I'm 2 years Cancer free as of Dec 16th, after battling the Cancer for 18 months (undergoing chemo for 18 months and having had 14 sessions of radiation.)

To be honest, I still get angry about this. And frustrated.

Mostly because, after EVERYTHING, few people are willing to respect that I have Celiac, and that having Celiac contributed to having Cancer.

My GI doctor said No villi damage = no Celiac.

(I've had a MD and 2 alternative medicine doctors say that positive blood work and negative biopsy = latent celiac disease, especially given my history and the cancer diagnosis.)

And even with that, my family doesn't much take this seriously either...

Anyone else out there relate?

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

Celiac.com Sponsor (A8-M):


annlisa Rookie
annlisa
Posted

So good you are sharing

thank you

Gemini Experienced
Gemini
Posted

All I can say is I am happy that you have been cancer free for 2 years and hope that trend continues for the rest of your long life.  As far as those doctors are concerned, I cannot blame you in the least for still being angry about it.  My take, for what it's worth, is that they missed your damaged area's from Celiac because finding a mass trumps everything else.  They concentrated on the trees because they got lost in the forest.

If a person has positive blood work and a negative biopsy, it means they missed the damaged bits. What the hell does latent Celiac Disease even mean?  Keep eating gluten until you have enough damage, including cancer, for them to find?  Nothing else causes positive blood work on a Celiac panel except Celiac Disease.  The only exception would be a positive tTg, which could mean another AI disease but it would have to be low positive, not Celiac high positive.

You will need to be determined and strong with the doubters.  Let them know you will not tolerate being sabotaged with your diet or throw any negative thoughts your way.  This is too important.  As for the docs, tell them you are strictly gluten free due to your cancer diagnosis and positive blood work so shut up about it!  ;).  Best of luck to you.........we believe you!

cyclinglady Grand Master
cyclinglady
Posted

Thank you for sharing!  Your posting will help many!  

icelandgirl Proficient
icelandgirl
Posted

I'm so sorry for what you have been through, but also very glad that you shared!  People need to understand how serious this disease is when left untreated.  Thank you for sharing with us!

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. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      8

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      Thanks this is helpful!
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    3. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    4. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    5. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,914
    • Most Online (within 30 mins)
      7,748
    Momxiety
    Newest Member
    Momxiety
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.