Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Can You Die From Celiacs?
0

19 posts in this topic

I'm beginning to realize I'm rather naive since joining this site. In a few posts, there have been references made to dying from celiac disease...how? (be kind)

0

Share this post


Link to post
Share on other sites


Ads by Google:

people can die from UNDIAGNOSED Celiac, or if they were diagnosed so late in life that they have so many other related health issues... however, if you've been properly dx'ed and adhere to a strict gluten free diet, then your odds of dying return to that of the average population, meaning you are more likely to be hit by a falling tree than to die of Celiac related complications. There are rare cases of refractory sprue that supposedly do not respond to the gluten-free diet, but again, this is rare and more likely the person isn't being as strict about their diet as they think they are... so,

don't panic... eat gluten-free and be healthy and don't worry about dying!

0

Share this post


Link to post
Share on other sites

Welcome here! :) Don't worry, most here are kind.

From what I know, I believe you can if it goes unDxed for a long time. Without the right minerals/nutrients (which you're deprived of if your villi is serevely damaged from the anti-bodies attacking the gluten sticking to them because it can't be taken in if your villi is barely there.), you can lose excessive weight (been down that road), lose hair (same), causes other illnesses and diseases such as cancer. The tiredness is another thing, it can bring you down fast. No energy to excerise, do things that were normal, or anything else. It affects the entire body. Combos of D and C, headaches and other symptoms can wear you down. Some people don't have these symptoms at all, but, it's still doing the damage.

Nini is absolutely right!!! Your body should give a good dietary response and the villi will heal. Keeping with the diet is the key.

If you need anything, give me a PM!

-Ash

Edited by Ashley
0

Share this post


Link to post
Share on other sites

My youngest almost died from undiagnosed celiac, but technically she would have died from malnourishment caused by celiac disease.

I do know that some people are so far gone even when they do get diagnosed that they die from complications related to celiac, like a friend of mine who is fighting stomache cancer that they say was "caused" by her celiac disease.

0

Share this post


Link to post
Share on other sites
Welcome here! :) Don't worry, most here are kind.

From what I know, I believe you can if it goes unDxed for a long time. Without the right minerals/nutrients (which you're deprived of if your villi is serevely damaged from the anti-bodies attacking the gluten sticking to them because it can't be taken in if your villi is barely there.), you can lose excessive weight (been down that road), lose hair (same), causes other illnesses and diseases such as cancer. The tiredness is another thing, it can bring you down fast. No energy to excerise, do things that were normal, or anything else. It affects the entire body. Combos of D and C, headaches and other symptoms can wear you down. Some people don't have these symptoms at all, but, it's still doing the damage.

Nini is absolutely right!!! Your body should give a good dietary response and the villi will heal. Keeping with the diet is the key.

If you need anything, give me a PM!

-Ash

Thanks for the clarification :) I have been gluten-free for 5 years now and am rather paranoid about staying that way--I even bring my own food to my Mom's when I visit. I was at the docs yesterday and he is testing my B12 levels, thyroid, calcium etc as I'm having problems with low weight (5'2" and weigh 97lbs) and hair loss--which really makes me mad. Guess I wait for the results and see what we need to do. Thanks for the responses!

0

Share this post


Link to post
Share on other sites




Thanks for the clarification :) I have been gluten-free for 5 years now and am rather paranoid about staying that way--I even bring my own food to my Mom's when I visit. I was at the docs yesterday and he is testing my B12 levels, thyroid, calcium etc as I'm having problems with low weight (5'2" and weigh 97lbs) and hair loss--which really makes me mad. Guess I wait for the results and see what we need to do. Thanks for the responses!

No problem. Let us know how the testing went. :lol:

-Ash

0

Share this post


Link to post
Share on other sites

yep, it's the undiagnosed celiacs, or the lack of compliance on the diet that's the problem. nutritional deficiencies and chronic inflammation lead to other autoimmune diseases, chronic states of nutritional deficiency, and cancers. some studies have shown that untreated celiac disease shortens the life span, on average, by 10 years, without saying anything about how it affects quality of life.

0

Share this post


Link to post
Share on other sites

If you know who Kid Rock is, he used to have a 'sidekick' rapper named Joe C, who was often refered to as a 'midget' (their words, not mine). He would always correct people and say "I'm not a midget, I have Celiac Disease." He apparently had it bad/long enought that his growth was permanently stunted. Also, it's listed as his cause of death -- I believe he was in his 20's. Obviously an extreme example.

OK, I'm done pretending to be hip now.

0

Share this post


Link to post
Share on other sites

I've always wondered about that guy in kid rock's group....I knew that celiac disease was the official cause of his death, but I don't really understand that. I've heard that he was on 20 some different medications for celiac disease too :huh: . I just don't understand how if he knew he had celiac disease and was on a gluten-free diet how he died of celiac disease. I could see if the official cause of his death was complications from celiac disease and his medications were also because of complications....but as far as I know there aren't any medications for celiac disease. I just never really understood that whole situation :unsure:

0

Share this post


Link to post
Share on other sites

I thought he had the refractory sprue which is why celiac is listed as cause of death. Although I am probably wrong since I am not up on Kid Rock!

Hez

0

Share this post


Link to post
Share on other sites

L.A., this is a scary subject, but I agree that it's one that should be discussed. Don't be worried that you haven't gained much weight after being gluten-free for so long. That doesn't mean you have refractory sprue. Some people are just wired to be thin no matter what (some lucky people that is). I think refractory sprue is a fear that has crossed every celiac's mind at some point (it's crossed my mind). Just continue being careful to avoid all gluten and you will be fine, that's what all the experts say.

0

Share this post


Link to post
Share on other sites
L.A., this is a scary subject, but I agree that it's one that should be discussed. Don't be worried that you haven't gained much weight after being gluten-free for so long. That doesn't mean you have refractory sprue. Some people are just wired to be thin no matter what (some lucky people that is). I think refractory sprue is a fear that has crossed every celiac's mind at some point (it's crossed my mind). Just continue being careful to avoid all gluten and you will be fine, that's what all the experts say.

Ok. No laughing...what is refractoy sprue?

0

Share this post


Link to post
Share on other sites
Ok. No laughing...what is refractoy sprue?

It's where the villi are unresponsive to the gluten-free diet, and the villi remain atrophied. That means you basically don't get better and you continue to not get enough nutrition, etc.

0

Share this post


Link to post
Share on other sites
It's where the villi are unresponsive to the gluten-free diet, and the villi remain atrophied. That means you basically don't get better and you continue to not get enough nutrition, etc.

And then you die? I don't need to worry about this since my biopsy was negative right? :blink:

0

Share this post


Link to post
Share on other sites
And then you die? I don't need to worry about this since my biopsy was negative right? :blink:

It is thought that if you have refractory celiac disease -the cell changes that occur will lead to lymphoma(cancer)-so yes,you could die-but nothing is cut and dried.

More often than not the people dx with 'refractory' didn't get their dx of celiac disease until late in life,so are usually pretty sick by then.

My husband was dx with refractory celiac disease(Age 40yrs) as the last 2 biopsies after going G.F showed there was no improvement in his villi.He also had a course of steroids to try and help him heal.

Believe me,my hubbies is far from dying!!!

I think there is still alot to learn about 'non-responsive' celiac disease,as in no way does my husband fit 'you're gonna die' bill.

0

Share this post


Link to post
Share on other sites
It is thought that if you have refractory celiac disease -the cell changes that occur will lead to lymphoma(cancer)-so yes,you could die-but nothing is cut and dried.

More often than not the people dx with 'refractory' didn't get their dx of celiac disease until late in life,so are usually pretty sick by then.

My husband was dx with refractory celiac disease(Age 40yrs) as the last 2 biopsies after going G.F showed there was no improvement in his villi.He also had a course of steroids to try and help him heal.

Believe me,my hubbies is far from dying!!!

I think there is still alot to learn about 'non-responsive' celiac disease,as in no way does my husband fit 'you're gonna die' bill.

thanks! :)

0

Share this post


Link to post
Share on other sites
It is thought that if you have refractory celiac disease -the cell changes that occur will lead to lymphoma(cancer)-so yes,you could die-but nothing is cut and dried.

My uncle died of Lymphoma in '98 three days after Christmas. 'Round the began of '98, late '97 or so, he began to have problems with his stomach and didn't eat very much. Looking back now, it seemed so much like he had to have Celiac. I highly think he did have celiac disease. Dunno if it was refractory but I wish celiac disease was more know of back then as it is now. :(

-Ash

0

Share this post


Link to post
Share on other sites

as for the refractory spru, how do they know if thats what you have? if my bloodwork was absolutly negative, perfectly iga lvels perfect everything, does that meen its not?

i think my dad has celiac, but he wont listen to me- his teeth are rotting out- he has what look like meth blisters on his face- a very rounded belley but no wait anywhere else... really wish he would listen to me before he does have real problems

0

Share this post


Link to post
Share on other sites

Refractory Celiac is very very rare. Say you have a biopsy done and it shows major damage so you go 100% gluten free. Refractory means after you go gluten free, the damage is still there and has shown no sign of healing. In this case, you usually have to go on steroids.

As far as dying from celiac goes, if you have celiac and do not go gluten free or even cheat as often as once a month(which proves you damage yourself just like not following the diet) you are more likely to get cancer and other life threatening and disabling illnesses and it takes about 10 years off of your life.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,365
    • Total Posts
      920,552
  • Topics

  • Posts

    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined