Yes, You Can Die From Celiac Disease

by John Libonati on March 10th, 2008


You can definitely die from celiac disease, in a variety of ways:

1. Dehydration – Extreme damage to the intestinal lining can lead to death through dehydration.  In this case, the lining that is supposed to hold water in your body no longer functions.  The gut actually pulls water from your body.

2. Malignancies – Malabsorption of nutrients or consistent damage to cellular structures leads to cancers: lymphoma, leukemia, intestinal, esophageal, etc.

3. Pregnancy complications – Nutrient deficiencies can lead to cardiomyopathy in the mother or birth defects in the fetus from folic acid deficiency, protein deficiency, etc.

4. Immunodeficiency – A weakened immune system can allow common illnesses to become deadly – the flu for example.  Other illnesses normally fought off, are not.

5. Autoimmune diseases – Celiac disease, if not diagnosed and treated early, causes the body to react to other things in the body.  As the body tries to unsuccessfully attack and remove gluten (because the person keeps eating it), the immune system stays on a heightened alert and starts attacking other things.

6. Malnutrition – Any health problem that comes from malnutrition of any one or more nutrient that can lead to death can be caused by celiac disease.

Here are just 6 examples of how celiac disease can kill you.  It is a deadly serious condition caused by eating what is essentially a poison to susceptible people – people with celiac disease.

The gluten-free diet is the elimination of gluten from the diet.  That is only the first step.  The next step is determining any health problems that have arisen and treating them.  The final step is ongoing identification of health problems that arise in the future to determine how to treat yourself.

-John Libonati

John Libonati is Vice President and co-Founder of Gluten Free Works, Inc. He can be reached at john.libonati@glutenfreeworks.com.


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20 Responses to “Yes, You Can Die From Celiac Disease”

  1. Jason says:

    Im 35 and when I was around 22 I started waking regularly to do the toilet during the night and got very bloated and had lots of abdomi9nal pain and had mild tingling in my finger tips I also found sleeping very difficult 13 years later with nothing but its IBS from doctors I have numb hands especially my right hand mainly my pinky and the finger next to it I have gained huge amounts of weight I have constant pain below my belly button I have lots of pains in my hands and wrists and fore arms , have felt like I was dying for years but doctors just rushed me out as soon as they could…..now I have stumbled across this Celiac Disease I feel I may have found my problem….surely if it was a doctor would have mentioned this im so angry and confused 13 years of my life destroyed and it could be something as simple as going gluten free which I didnt even know what that was although id heard of it

  2. Erica says:

    I am suffering from so many Health issues from celiac disease.I can barely make it throughout the day. At what point does hospitalization occurs? I was undiagnosed for years and now my health is so bad.

  3. brandy scarberry says:

    Hello my name is brandy and I have been sick going on 2 years. Had gallbladder surgery a year ago. Ever since then I have been sick. I been to a bunch of doctors I first got diagnosed with gastroparieses a about 5 months ago. Then I recently found out that I have celiac disease and its so miserable . Im in so much pain plus vomiting and being nauseated all the time . I’m only 18 and I’m to young to go through all this. I just need some advice some one please help me

    • Hi Brandy,

      I’m so sorry you have had such a tough time. Unfortunately, you are not alone and your story is all too common. The best thing you can do is educate yourself. Read the sections of this site called Gluten Disorders. Then, find out if a Celiac Disease support group is close to you. Those people really help and will know any good doctors who understand celiac disease. Finally, like us on Facebook and Twitter. We have tens of thousands of people who can help you.

      If you are 100% strict gluten free, no wheat, barley, rye or oats, you should see improvement soon.

      Take care!

      -John

    • Megan says:

      Brandy- I just came across your post. I know it’s been a while since then so I hope you get this. My son is 16 and has just been diagnosed with Celuac and Gastroperesis. I wonder if this happens often? I also was curious as to how you are doing and coping with things. I hope you are well. If you have any advice, I’d love to hear it.

      Megan

  4. juweiriya says:

    i have celiac disease since i dont know when….got diagnosed abt a year ago and its been really difficult to cotrol my diet….i used to suffer from food poisoning twice month or once a month for at least five years and the pain was so excruciating that i used to beg my mother to kill me and rid me of the pain….i even passed out and often had to be given pain killers in the form of injections…..excluding gluten from my dite has worked wonders for me….i no longer have any food poisoning attacks….i was the shortest kid in my class and now i am the tallest girl in my family…this disease is 40% more common among people than modern day doctors had predicted…

    • I am so glad the diet is working for you. Doctors and the public have no idea how common celiac disease is. Pass along our information to others so they can get well too. Thanks for helping us get the word out there! :)

      John

  5. Erin says:

    I watched my sister for years in horrific pain, on the floor unable to get up at times. Missed some work and other events. Then my eldest sister, it skipped one and then me, the youngest of seven as well as my son.
    My son has passed out, even hit his head one time which resulted in a hospital visit. He was always tired,as was I. I spent time on the bathroom floor in terrible pain, white as a ghost sweating. I thought who could constantly have a stomach flu.
    We all suffer from depression so you can imagine that Dr’s blame all else on that. Long story short one by one we went gluten free and life has changed. When I saw day to day the changes this made for my son, not only gastro issues but also his depression no longer existed I started to think, “their’s something to this. I was the last one, the one to resist because I didn’t want to change my life and my habits and I was pleasantly surprised at how easy it is. Here are a few tips…
    1. make sure you get vitamins and nutrients
    2. just because something may say natural or organic it doesn’t mean it’s GF
    3. Even if a food is GF it doesn’t mean it’s good for you otherwise, so make wise choices.
    4. Blood tests are not reliable detection of Ciliac disease, in fact mine came back negative. The best way to detect is by a colon biopsy. We had one of us with a true detection and the other 3 of us just went gluten free.

    I believe anything can kill you, fast or slow so just pay attention to your body listen to it. It is not natural to be in pain daily. Myself as well of my 2 sisters have all been diagnosed with autoimmune disease through blood test… they ruled out majors like Lupus, RA and others and left us with ??” there are too many” I was told by a DR. “to test for everything”.
    I was told once you go Gluten Free it is extremely hard to detect Ciliac for the diagnoses because you are GF and your body has adjusted to the changes. I don’t know if this is true or not. I don’t need a diagnoses, I have enough labels. Labels for some are a way to deal with what life has given them it is an instruction, and now you need the tools for change. For others these labels are simple evil and become an excuse to be part of a pity pool. That won’t accomplish a thing. Be part of the solution, not the problem.
    I need to live healthy and being GF has given me no more stomach aches, much more energy and a better elevated mood. The End and my story will continue because I have control.

  6. John says:

    Hi on December 3 2012 I was diagnosed with the celiac disease it frightens me very much however the doctors think I have had the this disease since birth. I have also got to have a bone scan in two weeks because they think I may eventually get osteoporosis. My biggest problem is getting used to the gluten free diet cause I’ve always eaten what I please. In some respects I think I am very lucky getting away with what I have for so long. At this moment in time I don’t suffer any pain but who knows what ill happen in the future.Thank you listening, good luck everyone get well soon.

  7. clifford sisco says:

    GOOD AFTERNOON,
    I WAS DEALING WITH THESE SYMTOMS SINCE 2/2011.WENT ON SHORT TERM AND WAS DIAGNOSED 12/2012 WITH SEVERE CELIAC DISEASE,DISC DISEASE,SCHMORL`S NODES,HIP PAIN (MECHANICAL ISSUE).WENT BACK TO WORK IN 2/2012 AND IN 4/2012 THE SYMPTOMS RETURNED ,WAS DIAGNOSED WITH LACTOSE INTOLERANCE.NOW I AM ON LONG TERM DISABILITY,BECAUSE THE CHRONIC PAIN DOES NOT STOP OR THE SYMPTOMS FROM MY SEVERE CELIAC DISEASE.MEDICATIONS DID NOT WORK OR MY DIET.WHAT NEXT BECAUSE I APPLIED FOR SOCIAL SECURITY…..ANY ANSWERS THANK YOU

  8. linda says:

    HAVING JUST BURIED MY MOTHER WHO WAS DIAGNOSED WITH CELIAC DISEASE TO LATE AND SHE STARVED TO DEATH EVEN WITH ALL THE DRIPS COULD HOLD NOTHING IN

  9. Brea says:

    Guys, it’s simple enough to say, You absolutely CAN die from this disease. I talked with my doctors about it when my Gall Bladder failed on me and then my liver was starting to fail. If this disease is not taken care of, and it it goes undiagnosed then you can in fact die. If you ignore (and I dont see how you can) the disease and still eat gluten on a daily basis and don’t change your diet, then yes, it is a fact, you can die. I went undiagnosed for years and as a result, I was a very VERY sick girl. Don’t ignore the fact that you can, but if you follow the diet, and eat right then it is not deadly. So, please don’t say that it isn’t, talk to your doctors, they will tell you the same thing. If you don’t eat Gluten Free, then it is possible.

  10. Karen says:

    Kristin,

    You owe it to yourself to learn more about celiac and its potential. What is horrifying is for someone with the disease not to understand its potential.
    People can and do die of celiac with some frequency, mostly those never diagnosed until the complication occurs. CNS deterioration, esophageal cancer, intestinal lymphoma, complications from a ‘fellow traveler’ autoimmune disease, malnutrition,
    the rare but deadly celiac crisis. Its not some cutesy little condition easily ‘fixed’ with an extra shelf-full of Bob’s Red Mill products and a heavy dose of personal denial. And suggesting otherwise is what’s irresponsible to all those reading this site for whom gluten is a danger. If you have celiac outright, its the product of
    a bad gene from both parents (autosomal recessive trait), meaning its in both
    family trees somewhere. You might want to try looking at the cause of death for
    relatives and tracking how many of the listed causes are commonly found in the
    presence of celiac disease (whether diagnosed or not).

  11. Kristin says:

    This article is absolutely inappropriate, and irresponsible. NO – you will not and can not DIE from celiac. Yes, it is an auto immune disease of which may result in more serious complications if untreated, or unknown. I am furious over this headline, and find that using fear as a motivator is simply wrong. Awareness of Celiac is critical, and the subsequent gfree lifestyle is an adjustment that can be difficult but will empower and enhance ones life.

    Again- horrified by this posting. As a woman w/ celiac I am aware and in touch w/ what my body needs. It will not kill me, but thanks for your ‘concern’.

    • John Libonati John Libonati says:

      This article is completely appropriate and responsible. More so, the deadliness of celiac disease is an ignored fact that is candy-coated by too many physicians. Kristin, the simple fact is that you can die from celiac disease – if it is not recognized as such and you do not remove gluten from your diet. The health issues stemming from nutrient deficiencies and direct damage to tissues and organs due to damage from celiac disease are many and serious. In addition, I will add that limited potential and diminished quality of life resulting from chronic health issues are another type of death. Early detection and treatment with a 100% STRICT gluten-free diet are crucial to optimal prognosis.

  12. Mark says:

    I read in a library book on Celiac that it can cause no gastro-intestinal symptoms but all these other symptoms that doctors treat individually even Non-hodgkins lymphoma.

    Then I made a connection with that form of cancer. My mother who was usually tired developed Non-hodgkins lymphoma and died of it. I’m convinced in retrospect that she had silent celiac disease.

    But don’t try talking to a doctor. It much easier for them to prescribe anxiety drugs than to read up on Celiac-gluten.

  13. Lisa says:

    been following gluten free diet cant seem to get symptoms under control not sure if doctors believe me losing weight dont want ot eat at all tired of throwing at least so far theres no cancer

  14. [...] John Libonati is the Founder of Gluten Free Works and wrote the following blog post in 2008: [...]

  15. kristof says:

    Been there.

    I am a chef and wasn’t diagnosed until I was 35. My work has been so much easier now that I’m not always sick and wondering why – not to mention the other side effects that are truly painful.

    Don’t be scaired. GF Lifestyle is so much easier then it was even 3 years ago & the food is fantastic!

  16. clarissa says:

    i am 22 i gave birth to a little girl 2 years ago and ever since i been dealing with it i just got diagnosed yesterday after 22 years of stomach pain and suffering i am scared!

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