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  • Jefferson Adams
    Jefferson Adams

    By Jefferson Adams •

    Rise in Fatal Celiac-Related Cancer Alarms Researchers

    Reviewed and edited by a celiac disease expert.

    Rare, but fatal celiac-disease-related cancer cases are on the rise. Here's the rundown.

    Rise in Fatal Celiac-Related Cancer Alarms Researchers - Ambient Experience by uci_innovation is marked with CC0 1.0.
    Caption:
    Ambient Experience by uci_innovation is marked with CC0 1.0.

    Celiac.com 02/19/2024 - A recent study presented at the 2023 annual meeting of the American College of Gastroenterology has raised concerns about the increasing incidence of enteropathy-associated T-cell lymphoma (EATL) – a rare and aggressive form of T-cell, non-Hodgkin lymphoma. This alarming trend has prompted researchers to explore the possible connection between EATL and celiac disease, shedding light on the risks faced by individuals with this autoimmune condition.

    Lead investigator Dr. Isabel Hujoel, Clinic Director of the Celiac Disease Center at UW Medical Center, Seattle, highlighted the strong association between EATL and celiac disease. While EATL is rare, most cases are observed in patients with celiac disease, suggesting a potential link between the two conditions. The study, utilizing data from the Surveillance, Epidemiology, and End Results (SEER) program database, identified 463 cases of EATL between 2000 and 2020, with an age-adjusted incidence rate of 0.014 per 100,000 people. Alarmingly, the incidence of EATL increased by 2.58% annually over this 20-year period.

    Celiac.com Sponsor (A12):
     Despite advancements in medical treatment, the prognosis for EATL remains poor, with a median survival of approximately six months. Findings from the study revealed that most cases were treated with a combination of surgery and chemotherapy. However, survival outcomes did not improve over the study period, underscoring the urgent need for more effective treatment strategies.

    Dr. Sophia Dar, a gastroenterology fellow at Southern Illinois University School of Medicine, emphasized the importance of early detection and treatment. While chemotherapy showed promising results, the overall mortality rate remained high, highlighting the challenges in managing this aggressive cancer.

    Researchers emphasized the need for further investigation into the factors contributing to the high mortality rate associated with EATL. Understanding these factors could pave the way for more efficient treatment plans and improved outcomes for patients.

    Debra Silberg, MD, PhD, Chief Scientific Officer of the nonprofit Beyond Celiac, emphasized the rarity of EATL and the need for targeted screening. Screening for EATL should be considered in cases of refractory celiac disease or when there is suspicion of complications related to celiac disease.

    The rise in cases of EATL serves as a sobering reminder of the potential complications associated with celiac disease. Heightened awareness, early detection, and improved treatment options are crucial in addressing this rare but deadly cancer among individuals with celiac disease.

    Read more at gastroendonews.com


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    Belladonna

    Is this form of cancer detected by a colonoscopy? 

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    Russ H

    It would normally be diagnosed by a combination of endoscopy and biopsy findings combined with blood tests for coeliac disease related antibodies.

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    ReginaR

    Are they finding it in patients that are not on a fully 100% gluten free diet? I thought I read somewhere that it is mostly affecting men over the age of 65 that aren’t diagnosed till later in life. These kinds of articles can stir up fear in our community and while yes information is key we need clarification on which group of celiac individuals is predominantly at risk. 

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    venice

    Yes would like more info what are the symptoms if any ??

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    ReginaR
    6 hours ago, venice said:

    Yes would like more info what are the symptoms if any ??

    Here’s a bit more to the article. Basically it’s caught with your blood work. And if you have refractory celiac disease you are at a higher risk. 
    https://www.gastroendonews.com/PRN/Article/01-24/celiac-disease-cancer-enteropathy-associated-T-cell-lymphoma/72569

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    Rebecca Clayton

    If this EATL is Lymphoma (?) then I understand that those with TYPE 2 REFRACTORY CELIAC DISEASE are at most risk. RCD is rare AND TYPE 2 is even more rare.

    I was diagnosed with TYPE 1 RCD at one of only two hospitals in the UK that can do this test. (by biopsies from the duodenum and possibly bloods?!)

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    knitty kitty
    1 hour ago, Rebecca Clayton said:

    If this EATL is Lymphoma (?) then I understand that those with TYPE 2 REFRACTORY CELIAC DISEASE are at most risk. RCD is rare AND TYPE 2 is even more rare.

    I was diagnosed with TYPE 1 RCD at one of only two hospitals in the UK that can do this test. (by biopsies from the duodenum and possibly bloods?!)

    Have you been checked for nutritional deficiencies?  Are you currently supplementing with vitamins and minerals?

    Some cancers and other illnesses occur because of nutritional deficiencies.

    High dose Thiamine has been shown to be beneficial in fighting cancer.

    References:

    Small and Large Intestine (I): Malabsorption of Nutrients

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070135/

    And

    High Dose Vitamin B1 Reduces Proliferation in Cancer Cell Lines Analogous to Dichloroacetate

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963161/

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    Rebecca Clayton

    Thanks for info knitty kitty! I live in Zimbabwe and no doctors here totally au fait with celiac disease let alone RCD. I'm seeing a gastroenterologist in Johannesburg in a few weeks just a check up and will mention your suggestion.

    On another note. October 2023 a CT Scan in Johannesburg revealed blood clots on lung and near liver. I've recently read celiac disease can cause thromboembolic events....???

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    knitty kitty

    @Rebecca Clayton, 

    I know that doctors frequently overlook nutritional deficiencies as a cause of health problems.  

    It's important to get high doses of Thiamine and the other B vitamins.  I've found some research showing several other B vitamins as well as Thiamine help with clotting.  High dose Thiamine was used in Covid patients to stop lung clots.

    Association between B-group vitamins and venous thrombosis: systematic review and meta-analysis of epidemiological studies

    https://pubmed.ncbi.nlm.nih.gov/22743781/

    Evaluation of thiamine as adjunctive therapy in COVID-19 critically ill patients: a two-center propensity score matched study

    "Thiamine use as adjunctive therapy may have potential survival benefits in critically ill patients with COVID-19. Additionally, it was associated with a lower incidence of thrombosis."

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8242279/

    Hydrocortisone, Ascorbic Acid and Thiamine (HAT Therapy) for the Treatment of Sepsis. Focus on Ascorbic Acid

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6265973/

    The importance of thiamine (vitamin B1) in humans

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10568373/

    The influence of B-complex vitamins upon the prolongation of prothrombin time by acetaldehyde

    https://pubmed.ncbi.nlm.nih.gov/23406661/

    Are you following a low histamine Paleo diet to reduce inflammation and histamine levels?  How are your Vitamin D levels?  Vitamin D helps regulate and lower inflammation.

    Since malabsorption and nutritional deficiencies can be so subtle and easily overlooked, supplementation to boost absorption is important.

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    Rebecca Clayton

    Thanks again. I'll have to show above to the Johannesburg doc. Could you email this info to me or ask Jeff Adams to do so please??s.clayton88@yahoo.co.uk 

    Many thanks!

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    knitty kitty

    @Rebecca Clayton,

    You can click on the links and open and save the studies on your device or print them out.

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  • About Me

    Jefferson Adams

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University. His articles, essays, poems, stories and book reviews have appeared in numerous magazines, journals, and websites, including North American Project, Antioch Review, Caliban, Mississippi Review, Slate, and more. He is the author of more than 2,500 articles on celiac disease. His university coursework includes studies in science, scientific methodology, biology, anatomy, physiology, medicine, logic, and advanced research. He previously devised health and medical content for Colgate, Dove, Pfizer, Sharecare, Walgreens, and more. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of numerous books, including "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

    >VIEW ALL ARTICLES BY JEFFERSON ADAMS

     

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    With this in mind, a team of researchers set out to conduct a comprehensive assessment of nutritional status and intestinal absorption capacity of patients with RCDII and EATL, and to compare that with data of newly diagnosed celiac disease patients. The research team included N.J. Wierdsma, P. Nijeboer, M.A. de van der Schueren, M. Berkenpas, A.A. van Bodegraven, and C.J. Mulder.
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