23738 Six Ways Celiac Disease Can Kill You - Celiac.com
No popular authors found.
Ads by Google:

Categories

No categories found.


Get Celiac.com's E-Newsletter




Ads by Google:



Follow / Share


  FOLLOW US:
Twitter Facebook Google Plus Pinterest RSS Podcast Email  Get Email Alerts

SHARE:

Popular Articles

No popular articles found.
Celiac.com Sponsors:

Six Ways Celiac Disease Can Kill You

Celiac.com 08/13/2014 - Even though some folks suffering from symptoms of celiac disease will claim they would welcome death, most people will not actually die from the immediate symptoms of celiac disease; no matter how bad those symptoms get.

Photo: Wikimedia Commons--NabokovHowever, left untreated, celiac disease can lead to numerous other conditions, several of which are potentially fatal. Remember, many people experience few, or no classic symptoms of celiac disease. These folks may find it easy to keep eating gluten with relatively few noticeable consequences; at least for a time.

So, for people with celiac disease who ignore either their doctors, or their bodies, the risks can be huge. They can even lead to death by one of the following:

1) Cancer—Nobody wants cancer, and especially nobody wants the type of cancer that can strike people with gut damage that comes with long-untreated celiac disease.

People with untreated celiac disease are at risk of developing any number of associated conditions, including gastrointestinal cancer at rates of 40 to 100 times those of the general population. Chief among these types of cancer are a type known as Enteropathy-Associated T-cell Lymphoma (EATL). EATL is a gut cancer that often ends in death. People with celiac disease also need to watch out for non-Hodgkins lymphoma.

2) Thyroid Disease - There is a 2.5-fold increased risk of papillary cancer of thyroid for celiac patients.

The good news is that papillary cancer of the thyroid has a high cure rate, with 10-year survival rates estimated at 80% to 90% for any given patient. Still, the dark side is that 10-20% of patients with papillary cancer of the thyroid don’t survive.

3) Epilepsy - Rare form of celiac disease.

Patients with an autoimmune disease faced a nearly four-fold higher risk for epilepsy. In some cases, people with epilepsy can suffer from sudden unexpected death (SUDEP).

Ads by Google:

SUDEP are still poorly understood, it is possibly the most common cause of death as a result of complications from epilepsy, accounting for between 7.5 to 17% of all epilepsy related deaths and 50% of all deaths in refractory epilepsy.

4) Heart Failure - Celiac disease doubles the risk of coronary artery disease, which can, in many cases prove fatal.

5) Diabetes - Diabetes can cause numerous complications, some of which can be fatal. People with celiac disease have higher rates of diabetes than people without celiac disease. Moreover, long-term celiac disease increases death rates in people with diabetes.

There is also some evidence that a gluten-free diet can lower rates of Type 1 diabetes.

In the end, for people with T1D, having a celiac disease diagnosis for at least 15 years was associated with a 2.80 times greater risk of death

6) Obesity - Recent studies suggest that people with celiac disease are likely to be overweight or obese at the time of presentation.

Studies show that nearly 40% of people diagnosed with celiac disease are actually overweight, not underweight. Also, a full 30% of celiac disease patients are obese at the time of their diagnosis.

Of course, long term obesity can increase the likelihood of fatality in numerous categories. People treating celiac disease with a gluten-free diet are more likely to have a healthier weight. 

So, while celiac disease won't kill anyone in the short term, it can have devastating consequences if it remains untreated for a long period of time. Share your thoughts on these ways to die from untreated celiac disease, or add additional insights in the comments section.

Celiac.com welcomes your comments below (registration is NOT required).





Spread The Word







Related Articles



42 Responses:

 
Heidi
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
13 Aug 2014 2:03:39 PM PDT
It would be nice to include some positive info instead of scaring everyone with photos of caskets. I am all for being informed but this makes it sound as if it's a death sentence. Please provide info on what you can do to prevent and reduce your chances of these diseases instead of making it sound like we are all doomed. The caskets were a horrible visual. I am going to continue liking this page but if this happens again, I am going to get my information from an honest, but more uplifting source.

 
admin
( Author)
said this on
15 Aug 2014 3:25:57 PM PDT
The article is titled "Six Ways Celiac Disease Can Kill You," thus you probably should not have clicked on it if you wanted an uplifting article.

 
Petrea Reading
Rating: ratingfullratingfullratingemptyratingemptyratingempty Unrated
said this on
18 Aug 2014 11:57:48 AM PDT
The title was specific enough. The picture of caskets was a cheap shot to get attention. We all die sooner or later especially as we age as well. Pointing out how celiac CAN lead to diseases and effect which can lead to death is one thing. Sensationalizing with "caskets"or death heads is simply pompous! Also there is no real way to determine the actual amount of difference one would have lived if such and such...etc!

 
Jefferson
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated ( Author)
said this on
21 Aug 2014 1:51:41 PM PDT
Thanks, Petrea, for your comment. I agree that the chosen photo is a bit overly dramatic. I had scant time to source a photo, and took the easy way out on this one. It's definitely not the only option. I'll keep that in mind going forward.

 
Sally Baker
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
05 May 2016 12:33:58 AM PDT
And yet it's still there.

 
Patti
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
09 Sep 2014 5:44:16 AM PDT
Thank you and I agree...as a celiac patient, a nurse and also a multi-focal papillary/follicular thyroid cancer survivor, I appreciate when articles touch on the severity of the disease. I hear perceptions that CD causes, bloating, GI upset, etc. It is an autoimmune disease and the severity is often misunderstood as a disease of "food intolerance" or really just an annoying condition to those around us. I am gluten free for 6 years, post thyroid cancer/treatment for 2 years, and still I battle iron anemia an malabsorption of nutrients. Quite possibly a lifelong battle of irreparable damage.

 
Realtruth Please
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
21 Jun 2015 8:50:21 AM PDT
I think a lot of people are in denial about the severity of celiac disease. Wake up calls are needed.
I've watched two people slowly die from diarrhea and the results of having intestines that are no longer able to process food. They eventually can't even absorb water. Their veins become too small to get needles in them, and they die very slowly and miserably. This is not a scare tactic, this is a reality. These two people knew they had celiac disease, but did not take it seriously, nor did their doctors or families. So I was left at their side watching them slowly waste away, cleaning up poop, knowing that they could easily be saved, but no one will listen and I have to watch them die. Please, publish more real life stories of people dying from celiac disease. It's not just the autoimmune diseases associated with it that kill people, the disease itself will kill them.

 
Cassie
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
09 May 2015 3:16:44 AM PDT
I had that same thought. I clicked on this article to find out what makes celiac disease fatal because I have it and haven't been sticking to a gluten free diet. This article is exactly what I needed to read. My friends and family just don't understand how important it is that I stay gluten free. I was even in the hospital for six days in January for blood clots in which celiac disease is a factor for them as well, which I guess can also be fatal. Thank you for this article, it really opened my eyes.

 
Liz
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
12 Oct 2015 6:56:56 PM PDT
Thanks for the wake-up call. My mind sometimes lies to me, telling me it's ok. This past couple months I've been eating a lot of gluten, especially pizza (my favorite binge food). I have been experiencing problems I've not had previously. I need to get it together.

 
Mary Pratt
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
25 Jul 2016 9:31:46 AM PDT
I love it, someone is always ready to argue about something...they have nothing better to do with their time. Anyways the important thing is the article is great and very helpful, thank you.

 
Jefferson
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated ( Author)
said this on
16 Aug 2014 10:41:16 AM PDT
The first paragraph makes clear that "most people will not actually die from the immediate symptoms of celiac disease; no matter how bad those symptoms get." The rest is simply fact based reality. Untreated celiac disease can lead to potentially fatal complications down the road. Sorry if that was a bit much for your sensitivity setting.

 
Amy
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
18 Aug 2014 8:40:19 AM PDT
You always have such good information! I have both the DQ2 and the DQ8 gene markers. My mother has finally gone gluten free, and I always wondered where the other one on my dad's side of the family came from. This information points straight to my paternal grandmother. Wow! Another point, I know most people at diagnosis are overweight, but I was not. I was dangerously close to death from being malnourished due to my undiagnosed celiac. There are a lot of people that die from "failure to thrive" due to undiagnosed celiac.

 
Amy, An Allergic Foodie
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
20 Aug 2014 3:35:00 PM PDT
Amy, I have the DQ 2 and DQ 8 gene markers and I'm also named Amy. My dad had epileptic episodes late in life and died of heart problems. My brother has diabetes. I also have other autoimmune issues. My youngest son has celiac disease. Still, no one in my extended family believes that celiac is genetic!

 
Patti

said this on
09 Sep 2014 5:49:47 AM PDT
Amy,
I can relate to your strong family history and yet the denial remains! I too have te DQ2 and DQ8 markers, my children are positive as well and yet none of my sisters have been tested. Instead my eldest sister reassures me that she only buys whole grain organic flour. Oh good! Very good quality poison. I am a nurse and just resign to allow those members to have the knowledge and make informed autonomous decisions.

 
Ruth

said this on
22 Aug 2014 8:46:36 AM PDT
Like you, I was not overweight when diagnosed with celiac disease, but I had become so ill by the time I was diagnosed I almost wished I would die. I was so undernourished I believe I could have eventually died of malnutrition.

 
Mary
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Sep 2015 12:00:06 PM PDT
I, too, was way underweight. Down almost to 100 lbs at 63 years of age. Had celiac disease my whole adult life, but always treated for individual health issues. I was getting weaker, and expected to hear I already had cancer, but my doctor said it hadn't turned to cancer YET. I'm in Stage 4 of celiac disease. I immediately went 100% gluten free. I'm up 35 lbs. in a year. Stunned, but realize, celiac disease damage is irreversible, but stoppable. Keep researching, read labels, and download the gluten free app on your iPhone to scan labels in the market before you buy. Feeling Grateful everyday!

 
tammy garrett
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
26 Jan 2016 6:39:24 AM PDT
My mother and I both have celiac...I self diagnosed in early 2009, she was diagnosed in Oct 2009 after numerous endoscopes and colonoscopies we were never under weight, always over weight she has so many issue today, I cannot even begin to describe them. Our family has no idea, my husband is only first beginning to understand. Gluten free has been the best option for me. I still have issues, but try to be as educated as I can be...wish I was more normal!!

 
Peggy Cook
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
06 Feb 2016 3:59:44 AM PDT
I just wanted to respond to something you said.
You said gluten free is the best option for you. People with celiac disease there is no other option. Gluten free is the only option. I personally believe everyone needs to be gluten free as gluten causes so many problems. If people care about their health they would keep gluten out of their diet before it hurts them too.
Take care of yourself and please don't wait like I have. I am tired of being sick and hope it's not to late for me. I am taking a drastic change because I do not want to die or suffer anymore.

 
Luann
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
18 Aug 2014 8:44:45 AM PDT
I think this was an excellent article. It clearly states how important it is to follow a gluten free diet. I for one would love to not follow a GF diet and this reminds me how crucial it is.

 
Peter
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
18 Aug 2014 10:50:32 AM PDT
There I am in the ER having a heart attack, the head of cardiology is introducing himself to me before I head off to the Cath Lab for 3 stints. He asks do you have any other medical conditions. I share that I'm self diagnosed celiac, he responds"oh yeah, I remember that from medical school....he states.
I had not been gluten free for a number of years leading up to that day, my bad. It wasn't even on his radar.

 
Donnie
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
18 Aug 2014 12:57:27 PM PDT
It is always a good idea to tell it like it is. Too many people cheat on a gluten-free diet, or won't eat gluten free at all, even when they have a celiac diagnosis. If they know of the many risk factors of untreated celiac, it might be a wake up call for a few of them. I had the classic symptoms of celiac disease most of my life, but was never tested for it, until 10 years ago. I didn't even know anything about celiac. But, when I found out what was wrong I went totally GF, and never cheat. I was diagnosed with Hashimotos thyroid disease, many years before my celiac diagnosis.

 
Linda
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
18 Aug 2014 7:06:47 PM PDT
I was more interested in the title and content than the photo. It is a good reminder for people with celiac disease and non-celiac gluten intolerance to continue avoiding gluten. The potential diseases that may result from gluten are not worth the risk.

 
Cindy
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
18 Aug 2014 8:46:29 PM PDT
This was a great article! I was diagnosed with celiac disease at the age of 52 and at that time weighed 110 lbs, losing 5 lbs every week until the diagnosis was made. I also have Barretts Esophagus , had a brain tumor, and had 5 tonic clonic seizures consecutively in one day, and had thyroid disease as well. All of these maladies were later connected to celiac disease. It is important to follow the GF diet, but that does not guarantee that none of these things will happen

 
Szilvia
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
20 Aug 2014 12:49:23 PM PDT
It was a good eye opener article! More education never hurts.
Fortunately, there is so many different ways to get preventative methods or products to help heal and be better even for celiac sufferers. There are so many natural herbs out there to aid prevent the constant gut inflammation and/or help to boost the immune system and the absorption ratio also.

 
Donna
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
20 Aug 2014 9:31:36 PM PDT
I love the fact that the coffins are there. I am beating my head against the wall to get folks to take this serious!!! and if graphics is what it takes to get them to read and start their own research, so be it.

 
christine
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
25 Aug 2014 4:09:13 PM PDT
You left out depression and anxiety.

 
Sue Farrow
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
01 Nov 2014 1:24:39 PM PDT
I have recently been diagnosed with coeliac and continue to eat wheat because I cant stand gluten free food. I weigh 5 stone 13lbs because I have a poor appetite, all I eat is soup, bead and crackers, wheat ones of course. I was told I will die because I am continuing to eat wheat but I didn't eat wheat then I would starve as the soup contains wheat, the bread contains wheat and so do the crackers. My taste buds won't like anything else and that's all I eat. I'm scared of dying and will I die in my sleep just like that one night I don't know or when or will I be ill before my death, my consultant has not told me. Does anyone know.

 
Mary
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Sep 2015 12:13:41 PM PDT
Try Amy's brand frozen dinners, pepperoni pizza, UDI'S Millet Chia Bread. Toast it. It's not going to get any better, until you change your diet. If you don't like any gluten free breads, then eat no bread. You must be strict with yourself. Fresh fruits, veggies, grilled meats, Bushes Vegetarian baked beans are gluten free. I add lots of seasonings, and you'll find you don't like the old regular diet, because gluten free has introduced you to much tastier foods. Snicker Doodle cookies are way better than cake. Bob's Red Mill cornbread mix is better than regular we were buying. Nature Valley Almond bars are So good, betcha can't eat just one. PLZ give it an all out effort. I don't miss cakes, never did like breaded and deep-fried, and I'm healthier now. Good Luck

 
Maureen
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
18 Jan 2016 6:09:07 PM PDT
You're not dying from celiac, you're dying from stupidity.

 
Madeline Vance
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
19 Nov 2014 7:48:44 AM PDT
I don't have thyroid cancer but I do have lots of thyroid nodules. How do I get rid of them and why have they developed?
Currently, I read about using cabbage leaves on the thyroid area of the neck and bound it tightly with a cotton cloth. Very unusual and in the beginning very uncomfortable.

 
Brenda
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
29 Mar 2015 7:25:03 AM PDT
Thank you for your article, it was very informative. This Jan. of 2015, one of the worst day of my life. I was at a health store and all of the sudden I wasn't feeling right, I was sweating bullets and I blacked out, then came to and yelled for my husband, he pulled me outside with my wheel chair (I'm disabled), when we got outside, I blacked out again and threw up, they called 911, by the time they got there, my lips were blue and when they got me into the ambulance, they lost me, and had to do CPR on me, and got me back. Thank God the hospital was only less than a mile away. Come to find out, my Hemoglobin was so low that the doctor was shocked that I was alive, they admitted me and I had to have 3 blood transfusions. From there, many different specialists came in and I had two procedures and surgery and that's when I was diagnosed with celiac disease, colitis, & H. Pylori. They said I was very lucky to be alive. So its been almost two months since I have been diagnosed & I am learning how to eat GF, its so complicated for me, but I am following what the doctor is saying. I have never realized how serious this is. I never even heard of celiac until now. As far as family having it, no one, has it. People needs to take this seriously. I am 43 and I would like to live longer. I almost lost my life because of it and now I have to live a whole new lifestyle and I am okay with it, just its taking time to adjust to it, one day at a time. Articles like this we NEED, so people can understand the consequences that they are taking, if they don't follow the GF diet. Thank you again for your article!! God Bless.

 
Joe Denver
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
19 Jun 2015 10:02:48 AM PDT
My opinion is that this article is one of the most interesting and relevant to celiac conditions.

 
Darlene
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
12 Sep 2015 12:03:14 PM PDT
This freaked me out!

 
Pat
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
19 Jan 2016 8:47:17 AM PDT
Suicide is the 7th way to die from celiac disease. Scary.

 
Shelly
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
19 Jan 2016 3:29:29 PM PDT
The article was interesting! I was told I had celiac disease when I was 49 years old. I was down to 100 pounds. I couldn't eat anything. It has been really hard being on a gluten-free diet, because I have to be so careful. People need to understand that celiac is very serious. Last week I was told that I had fluid around my heart and I have a heart valve problem. I still have a lot of stomach problems and hurt daily. Someone needs to find something that will helps us. For me it is not a fad, it is my life style and I have to live with it for the rest of my life!!!!

 
Mary
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
21 Feb 2016 10:06:11 AM PDT
I also became very thin down to 75 pounds, very sick, everything I ate made it worse, my hemo was down to 5.3. I was dying, starving to death, and being told I was emotionally disturbed and was starving myself. It's hereditary. I'm glad you found out you have it and can feel better now. I have found out that you can actually claim a certain amount of the money you spend on your gluten free foods on your income tax, just save your receipts. Since it is a disease that can not be medicated like, diabetes, and other diseases, you have to eat foods to control it, you can claim that on your income taxes.

 
Walter
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
27 Mar 2016 8:30:09 AM PDT
Most food is gluten food. Since only grains have gluten and there is no nutritional need for grains avoiding grains makes your diet gluten free.

Of curse, frankenfood manufactures love to add wheat and other grains to their products so you will have to cook for yourself.

 
Mary
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
21 Feb 2016 9:54:58 AM PDT
When I was finally diagnosed with Celiac I was only 75 pounds, even though I was eating more than most people could everyday, I was starving to death, because the gluten was stopping my body from absorbing any fat, vitamins, and minerals from the food I was eating. I was told that I was going to die, and no one could figure out why, I was accused of starving myself, having mental problems. My blood count was so low it was down to 5.3. I had to go to hematologist every Friday, for months, while they put an iv in allowing medicine with iron, vitamins, and other minerals to put into my blood. I was being told I was going to die from starvation. I also want you to know that I had problems with some foods as a child. The disease started to get worse in my late to early 30s. Someone I knew was spending a lot of time researching online, and found out bout celiac, which at the time was not something many people really paid attention too. I was tested, and I am now 115 pounds, feeling great, no more anemia, no more emotion, problems such as anxiety, depression, no more female monthly problems ( which were really horrible). I absorb minerals and vitamins, fat, everything I need from my food. If you are having any bad stomach problems, anemic, feeling run down, tired, depressed, or anxious all of the time, having issues with your female monthly, lost weight, gained weight, just have the test done, don't wait, please, there are many people who have died in my family from cancers, that did not know about celiac, it is hereditary. Please be tested, and please have your children tested. I am also wondering why the people who put up this website force us to give them our names and email addresses to share important information with others that we might be able to help.

 
Karen
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
15 Mar 2016 2:29:02 PM PDT
About 3 years ago, my doctor did some blood work on me. When I went back for a follow up, she said she "believes" I have celiac disease. The doctor was reading aloud the numbers to certain blood tests I had done and I asked her so what do those numbers mean, she replied she was not sure! The doctor suggested that I try a gluten free diet and see if I feel any better. I tried that for a few weeks and not only was it very hard to find gluten free foods, especially because I live in a very rural town, I also did not feel better or really did not understand celiac disease at all. Now it is three years later and I feel like death! My feet are numb, my abdomen is swollen and I am in severe pain. I suffer from chronic fatigue and I could go on and on. I can honestly say I feel like death. My appendix has ruptured, my gall bladder was removed also. I saw another doctor but he refused to do any blood work and only told me to eat a better diet! I had an endoscopy a few weeks ago and today I got a phone call from that doctor. He informed me that I have severe celiac disease and soon I will be seeing this gastroenterologist to take the proper steps to help me live with this disease. I am upset with myself for not going to another doctor sooner yet I truly did not know of celiac disease. Hopefully I will be able to sustain a "healthy" life. For all those out there who do not take this disease seriously, please do! I have waited to long and was seen by a questionable doctor and now I suffer daily. I did not view this site when the caskets were visible, however, that's just where I feel I will end up! Open your eyes everyone for celiac disease is unpredictable and painful!

 
Bailey
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
07 Apr 2016 8:32:21 AM PDT
I'm dead thanks to this post

 
Ian Kay
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
06 Oct 2016 4:02:47 AM PDT
No clinical evidence whatsoever or clinical evidence references. The science is complex new diagnosis techniques, long there % death rates of coeliacs vs villi of the intestine other than coeliacs. Ref royal college of physicians London conference 2006.

 
Joe
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
03 Nov 2016 5:36:37 PM PDT
Regarding your GF diet and T1D claims - the study cited showed lower incidences in offspring of *mice* that were *affected by diabetes*. Not regular mice.rnAs type diabetes is an autoimmune disorder, But the thing that gets me is that T1D is an autoimmune disease, as is coeliac. So it only logically stands to reason that mice with autoimmune disorders are going to be likely to pass on many of those same markers to their offspring. Meanwhile, this article is drawing the conclusion that all people with GF diets have lower incidences of T1D, which is frankly untrue.




Rate this article and leave a comment:
Rating: * Poor Excellent
Your Name *: Email (private) *:




In Celiac.com's Forum Now:

All Activity
Celiac.com Celiac Disease & Gluten-Free Diet Forum - All Activity

That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer. Please know that you are not weak or crazy. Keep pushing for testing. It could still be celiac, it could be Crohns. Push your Dr's to figure this out. Best wishes.

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. I know I'm not crazy, but you know.

From what I have read online there is about a 1-3% chance of getting a false positive for celiac disease from a blood test. Was it a blood test that you got done? It may be worth your while to get a biopsy or more testing just to confirm it. I know being gluten free is a pain but it is better than getting cancer or other auto immune disorders.

I prefer edible candy. I have glaucoma and celiac so it helps me on a daily basis for all of my medical problems. I wish I could find a strain that has laxative effects so I didn't need linsess. Leafly.com has a lot of strain information and cannabist is a good resource, too. You can use CBD or THC and not get 'stoned'. I function fine on 20 mg of the candy. I refuse to drive if I smoke though. Good luck, hope it helps.

Is it NCGS or Low stomach acid misdiagnosed Low Stomach Acid and Celiac Disease Dear Gluten Intolerant please consider Low Stomach Acid as a possible Differential Diagnosis as a possible way to achieve remission of your GI symptom's. ?Consider what I say; and the Lord give thee understanding in all things? 2 Timothy 2: 7 Low stomach acid has now been linked to a probable cause of damage to the Small Intestine before and/or occurring with a Non-Celiac Gluten Sensitivity (NCGS) or Celiac diagnosis. See this research as reported on celiac.com that discusses the increased risk of/for someone to develop celiac disease after taking PPI?s. http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html Note how the article starts quoting ?Rates of celiac disease and the use of drugs to inhibit the secretion of stomach acid have both increased in recent decades. A research team recently set out to explore the association between anti-secretory medication exposure and subsequent development of celiac disease.? If these medicine are lowering stomach acid what cause effect relationship does/ could this have on Celaic/NCGS diagnosis is what he is postulating. He goes on to say without being very technical (read the whole article for yourself) that ?The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines. The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship?. If even after a year OFF these medicines your chances of developing Celiac Disease (celiac disease) not to mention even NCGS which is much more prominent surely the researcher is correct in postulating that there is a cause and effect relationship between low stomach acid and NCGS and/or Celiac disease. Surely there is something we can learn here. I now postulate some homework for the reader of this blog post. Do some research for yourself and see if achlorhydia or hypochlorhydia symptoms don?t at least resemble in some manner all of the GI symptoms you have been having. (I note some of the many symptom?s low stomach acid can present with below as referenced from Dr. Myatt?s online article ?What?s Burning You? for easy reference (It might not be what you think (my words)) It is important to note here that ?some? symptoms does not mean all but many or several. It is called a differential diagnosis. It is an important diagnostic tool in medicine. Think of the tv show ?House? where they spend the whole hour/over a week times going through the ?differential diagnosis? in short any one symptom can/have many different causes. The trick is how to quickly eliminate possible outcomes as symptoms (many) go up. All is usually never meet because that would make the disease in full outbreak and obvious even to the layman a condition described as ?frank? or ?classic? Scurvy or Rickets as an example. Sadly too often after 8 to 10+ years of testing after all the differential diagnosis?s are ruled out you are said by process of elimination to have Celiac Disease if you are lucky or maybe NCGS and not some other acronym GI disease as I like to refer to them as a group. GERD,IBS,UC, Chrons etc because if they turned down that street ? . you are/could be in/at a dead end for they stop looking at the trigger (gluten) as the cause of your gastric upset/digestive disorder(s). So in summary if 3 or 4 or 5 or 6 of these symptoms overlap ?many of? these symptoms could be Low Stomach Acid related. IF that is the cause/case for you then there is hope! For remission! From Dr. Myatts? Online article what?s burning you? From Dr. Myatts? Online article what?s burning you? http://healthbeatnews.com/whats-burning-you/ Diseases Associated with Low Gastric Function Low stomach acid is associated with the following conditions: * Acne rosacea * Addison?s disease * Allergic reactions * Candidiasis (chronic) * Cardiac arrhythmias * Celiac disease * Childhood asthma * Chronic autoimmune hepatitis * Chronic cough * Dermatitis herpeteformis * Diabetes (type I) * Eczema * Gallbladder disease * GERD * Graves disease (hyperthyroid) * Iron deficiency anemia * Laryngitis (chronic) * Lupus erythromatosis * Macular degeneration * Multiple sclerosis * Muscle Cramps * Myasthenia gravis * Mycobacterium avium complex (MAC) * Osteoporosis * Pernicious anemia * Polymyalgia rheumatica * Reynaud?s syndrome * Rheumatoid arthritis * Scleroderma * Sjogren?s syndrome * Stomach cancer * Ulcerative colitis * Vitiligo When low in stomach acid we become low in essential nutrients Quoting from Dr. Myatts ?what?s burning you? online article ?Our bodies need 60 or so essential nutrients. ?Essential? means that the body MUST have this nutrient or death will eventually ensue, and the nutrient must be obtained from diet because the body cannot manufacture it. Many of these essential nutrients require stomach acid for their assimilation. When stomach acid production declines, nutrient deficiencies begin. Calcium, for example, requires vigorous stomach acid in order to be assimilated. Interestingly, the rate of hip replacement surgery is much higher in people who routinely use antacids and acid-blocking drugs. We know that people who have ?acid stomach? were already having trouble assimilating calcium from food and nutritional supplements due to lack of normal stomach acid production. When these symptoms are ?band-aided? with drugs which decrease stomach acid even more, calcium assimilation can come to a near-halt. The result? Weak bones, hip fractures and joint complaints resulting in major surgery. Jonathan Wright, M.D., well-known and respected holistic physician, states that ?Although research in this area is entirely inadequate, its been my linical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal. When we test plasma amino acid levels for those with poor stomach function, we frequently find lower than usual levels of one or more of the eight essential amino acids: isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. Often there are functional insufficiencies of folic acid and/or vitamin B12.? Remember, these are essential nutrients. Deficiencies of any single one of them can cause serious health problems over time. Weak bones, diminish immune function, failing memory, loss of eyesight and many other ?diseases of aging? are often the result of decreased stomach function.? It is me again reader. So low stomach acid is the triggering agent (often) for low nutrients. Make too much sense! Now don?t take Vitamin?s for this condition where low Vitamins/Minerals are known to be low in patients who have this condition because . . . . (if you do you won?t need to keep coming back to the doctor) I can almost hear the doctor say now. Of course he/she doesn?t say that . . . just that the ?average person? doesn?t need to take Vitamins. Well I hate to break it too you . . . . but if you are having GI problems and reading this blog post on celac.com then you are not the ?average? person. You my friend or a sufferer or a friend of a sufferer still looking for answers. If that is you then consider taking either powdered stomach acid ? Betaine HCL or taking Niacinamide to help you reset your stress clock. A Canadian researcher wrote about this connection 15+ years ago but still most doctors? don?t understand this connection between about how ?Niacin treats digestive Problems? Here is the full link so you can research it more yourself. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml And you might not after a first reading. I didn?t believe it myself for over a year . . . but every time I thought about it ? it (Low Stomach Acid) made/makes the most sense to me. **** Note: research this yourself. Here is a link about how to take Betaine HCL (powdered stomach) for maximum effectiveness. http://20somethingallergies.com/how-much-hcl-do-i-take-learn-to-test-for-your-correct-dose/ Don?t take my blog post as medical advice. It is only what I did . . . it might not work for you but I think it is worth a try especially if you are not now taking an acid reducer. (see notes below about why this might) be more difficult if you are already taking an acid reducer . . . because the rebound wall (see chris kresser link) keeps us locked in . . . sometimes for years. Since I was not taking acid reducers at the time I took Betaine HCL my stomach problems improved and I am sharing this now in the hopes it might help yours too! Now back to (really) LOW stomach acid being diagnosed as HIGH stomach acid these days. How can we know if it truly high or low? You?ve heard the phrase timing is everything well it is here too! Timeline is important in any diagnosis. IF your stomach acid was HIGH as you often hear (everywhere) you hear take a Proton Pump Inhibitor aka acid reducer?s for heartburn/GERD (medical name for heartburn) then eating food (carbs, greasy things) wouldn?t bother you. The acid would cut it up but if it is already low/weak then even a little acid can burn your esophagus which is not coated like the stomach to protect you from high acid. BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight your in and things (carbs/fats) become to ferment, rancidify and cause heart burn. Leading in time to Non-Celiac disease first and with enough injury (and time) to Marsh lesions qualifying you for diagnosis as a Celiac candidate / patient. See above link between/about PPI?s in the year preceding a Celiac diagnosis. If you (can) be that patient and weight the xx number of years for all this damage to occur, there is a better way it is called digestion! A virtuous cycle can replace the vicious cycle you are now in ? it is caused digestion. Digest your food with healthy stomach acid and your body will thank you for it with the God given burp. A healthy child burps (at 6 months of age normally) and a healthy adult should too and you will again after taken Niacinamide 3/day for 6 months or this is not the right diagnosis. *********Note this is not medical advice only my experience with Niacinamide and my many years researching this topic as a fellow sufferer. Let me make these disclaimer(s). If you are a) experiencing heartburn that causing vomiting (with unintended weight loss) you may have a special case of heartburn that feels like heartburn (on steroids) that is really Bile Reflux and taking Stomach is not something you should do without medical advice and supervision. See this NYtimes article that discusses the many complications often seen with Bile Reflux patients and why it is treated as Heartburn often and why Bile Reflux is especially hard to recover from. http://www.nytimes.com/2009/06/30/health/30brod.html you are already taking an acid reducer then the chance you will get better (off of acid reducers completely) is only 50/50 on your first try but going low CARB can help your transition. Otherwise most people will get better when taking BetaineHCL for gastric support and Niacinamide to help them/you reset your digestive processes. See this online article about how Jo Lynne Shane got off Nexium for good. http://www.jolynneshane.com/how-i-got-off-nexium-for-good.html and her Epilogue http://www.jolynneshane.com/epilogue.html You will see she still struggles some but is much better when she let her natural digestive juices do their job. I call it the ?Natural Order of Things?. See this article about the digestion process being a North South Affair from the bodywisdom website http://bodywisdomnutrition.com/digestion-a-north-to-south-process/ Taking it (Niacinamide) (or any B-Vitamin) should be taken 2 to 3/day (too keep up serum levels) for 3 to 4 months (the time you can store B-Vitamins) in the liver mostly. Once you have a distinctive BURP that displaces the bloating and sense of ?I am going to explode? if I eat another bite (though you haven?t eaten half your meal) then normal digestion is occurring again. If you stool did not sink before this process (of taking Niacinamide begun) and burping became your ?new normal? then it (your stool) will begin to sink too! Burping without bloating is the ?Natural Order? of good digestion. Don?t stop this process of taking B-Vitamins as Niacimaide or Slo-Niacin 2/day for at least 4 months then you should see most of your GI symptom?s go into remission. (I did not say "cure" but remission from your cross contamination's (flares/symptom's etc.) might be possible. Because our defenses are now strong enough to cut up proteins before they reach our small intestine (where most of the damage is done). Think of a castle with a moat around it (stomach acid is designed to protect us) when it is low (the moat doesn?t protect us) and when the moat is dry the castle becomes a ruin!!! So do proteins (lactose (casein), gluten, soy, seafood etc.) to our small intestines (they become ruined) when our stomach acid (moat) is low or worse dry! I repeat again Timeline is important in any diagnosis. All heartburn is not equal. IF your stomach acid is truly high then it WILL occur between meals when there is no food to tamp down the fire (occurring in your stomach) not your esophagus. The excess pressure from fermented carbs push open the trap door allowing the low acid you have to burn the lining of your uncoated esophagus. See also this online article by Chris Kresser to study this more about why/how this could be a case of medical misdiagnosis in more detail https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ This is part of a 3 part series that I think you will find very informative. This (low stomach acid) is a vicious cycle. STRONG stomach acid makes it a virtuous circle/cycle. Now food benefits you because low acid not only causes heartburn it limits your body?s absorptive ability by limiting its ability to cut up your food into digestible peptides and amino acids which are no longer harmful to your Small Intestine but helpful to your overall health because nutrients can now be absorbed because the food particles are now small enough to not cause harm to your villi. I hope this is helpful and it helps you the way it helped me. Maybe it will help you in a similar manner. I write this only as a guidepost on your way. May you find your way back to digestive peace! The ?Natural Order? of things! Praise bee to God! It is not a long way if you know the way . . . . from someone who has found his way back God being his help! There are more things I could say . . . but this post is getting kind of long but you get the gest. I noticed someone else on the celiac.com noticed the same improvement when they treated their low stomach acid and thought it was time a blog post talked about it. It is so much easier to consume all this information in one setting instead of hunting and peeking through several thread posts. Search for the posterboy on celiac.com and you will find it is my focus (how low stomach acid is misdiagnosed) and how Niacinamide helped me to restore its ?Natural Order? in the digestive process because it helped me! Here is the link to the Prousky?s abstract. 15+ years is a long time for people to continue to suffer but if the research it right then Niacinamide might help you too! http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm Let?s hope it is not another 15 years before doctor?s and people realize low stomach acid can explain many of the same symptom?s an IBS, NCGS or even a Celiac patient might experience given a long enough time for these conditions to develop from too low a stomach acid to protect our Small Intestine. See link at start of this blog post posted here again for convenience. http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html And it is worth noting about the time Celiac disease started (began to be more prevalent) / to increase in the population Acid reducer?s became more and more popular. *** Some plot the increase in time to Roundup usage but I am not buying it. PPI?s increase seam more plausible to me based on the relatively new research (less than 5 years old) is pretty current by research standards and the near linear response to increased first H2 stomach acid reducer?s then PPI?s in the population at large. *****Note: after I finished writing this blog post new research that in my mind confirms this connection was reported on celiac.com today that notes the link between gastric pH and impaired nutrient absorption. This very topic as I was getting ready to publish my post about low stomach acid possibly being diagnosed as Celiac disease on my posterboy blog mentions how a Celiac patient?s absorption can be impaired by gastric pH. https://www.celiac.com/articles/24738/1/Can-Celiac-Disease-Impair-Drug-Therapy-in-Patients/Page1.html Where they (researchers) say/ask discussing Celiac Disease and whether it (celiac disease) can impair drug therapy in patients. Note the opening paragraph discussing this topic quoting ?Celiac disease is associated with numerous chronic conditions, such as anemia and malabsorption of some critical vitamins. Changes in the gastrointestinal tract, rates of gastric emptying, and gastric pH are responsible for impaired vitamin and mineral absorption." i.e., low gastric pH can effect absorption. It stands to make reasonable sense to me they are related conditions and one is being diagnosed for the other often or at least one is being confused as the other and treating one (raising your stomach pH) might treat the other since many of the symptoms? are the same. *** this/these opinion(s) are my own and do not reflect an endorsement by celiac.com of these ideas, comments, thoughts or opinions. I hope this helps! You the way it did me! Good luck on your continued journey, Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen. 2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things. Posterboy by the Grace of God,