Untreated Celiac Disease Caused My Cancer!

[zenjess1980]

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?

[annlisa]

So good you are sharing

thank you

[Gemini]

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]

Thank you for sharing!  Your posting will help many!  

[icelandgirl]

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!