What Are The True Risks Of Eating Gluten?

[Magnus]

I was diagnosed with celiac spue by blood test/endoscopy this past year. I went to the doctor because I had been having diarrhea on and off for 6 years. I went to other gastro's several times before, but they never could find anything. I have gotten used to taking loperamide or lomotil and it keeps it under control. I have no problems with weight loss/gain, no other symptoms and what I have read about potential risks is that I am at a slight increased risk of lymphoma, but not greatly so. My doctor before doing my endoscopy said to eat as I usually do so that my intestines don't heal and he can see the damage. If he was concerned that 2 weeks of being gluten-free would heal 6 years of disease, how bad can it really be? I realize some people have different levels of disease and symptoms and I'm not diminishing your pain or suffering, I am just saying for me, I would rather take an occasional imodium and enjoy life not constantly worried and stressed over every single piece of food, soap, toothpaste, drink, etc that comes near me to avoid a slight risk of illness. My doctor admitted he was not an expert in this area and referred me to a specialist who wasn't on my insurance and wanted $500 just to have an office visit. I can't afford that which is one reason I am posting this. From my research, the risk seems minimal. It is like a dermatologist telling everyone that they should always wear sunscreen if outside for any length of time, but how many people really do that? I don't know anyone who hasn't been sunburned at some point or tan knowing there is a slight risk of skin cancer. Even if people don't tan, according to dermatologists, being in the sun AT ALL can cause cancer. Now drinking soda can cause esophageal cancer. Stomach cancer is common in diets high in rice and fish. Second hand smoke causes cancer. For me at least, I feel that my quality of life would be less giving up my favorite foods, being a pain to all family and friends about every food, etc when all I have is diarrhea 2 or 3 times a week. I guess the reason for my post is I would like to know what the true RISKS are in the future and not just some hypothetical some doctor has told you. (like the dermatologist) I have looked up some JAMA articles and they seem to support my conclusion that the risk is slight if malabsorption problems are not present. Considering I've eaten gluten for almost 7 years now with celiac disease and have virtually no pain and just occasional diarhea, other than a slight increased risk of lymphoma, what do I really have to worry about? (I am sorry for the length of this post)

[darlindeb25]

well magnus---let me give you some real things that have happened to me--i was sick my whole life, not just 6 years--i searched for a diagnosis for so much longer then that--the average diagnosis timein the US is 11 yrs--now that sucks and believe me--no one heals from celiacs in 2 weeks--i have been gluten-free for almost 4 yrs and i am still trying to recover--i didnt find celiacs until i was 46, my sister was 43 then and diagnosed with celiacs too, now our dad was this last nov---anyways--we both were so vitamn and mineral deficient, i was having severe panic attacks, diarrhea all the time--she was so vitamin deficient, the doc couldnt figure out how she could walk--she had to have iron transfusions--an IV drip for 3 hours every wednesday for over a month and then they told her she would be having this drip once a month for life---AND, when celiacs is undiagnosed, that leaves the door open for other diseases to jump in and take over--MS, severe arthritis, colitus, neuropathys, lupus, sjogrens disease, you name it--------i went so long undiagnosed that i have neuropathy--my fingers go numb, i have no strength in my hands, my ftoes go numb, the soles of my feet will burn--my face now has neuropathy and burns--i am now also intolerant of soy and very limited with corn, potatoes make me ill---it is very difficult for me to get the proper amount of vitamins now------DO YOURSELF A FAVOR AND GO GLUTEN FREE, for now--if your symptoms arent too bad--be thankful and make sure you feel good for the rest of your life--------deb

[celiac3270]

Here's a link to many of the problems associated with celiac. Untreated celiac disease can give you cancer, type 1 diabetes, osteoporosis, malabsorption, arthritis, lupus, neurological problems...the list goes on and on:

https://www.celiac.com/st_main.html?p_catid...-05105162400.d1

[Guest gillian502]

I can understand why you feel hesitant about this since you've never truly felt really ill, but let me tell you, it can happen at any time. I had some various stomach and other type symptoms for many years and blew them off, until I woke up with a startling vertigo attack one day and my life was never the same. I began to go downhill from there, experiencing constant dizziness, escallating migraine headaches, numbness in my arms and legs while sleeping, extreme abdominal swelling and pain, watery diarrhea every day for months, eventual weight loss, and I developed a heart condition known as "POTS" while waiting to be properly diagnosed with Celiac, as well as Colitis. I am still unable to hold a full time job, and I fell ill in 2002. I don't know how many of my symptoms I can blame on Celiac, but I'm assuming quite a few are related. I'm stuck with the heart problem, though, no matter how much better I get. That's the price I paid for the doctors taking their time to diagnose me. Trust us when we say, go gluten free. If you wait because you aren't symptomatic, then you'll have no one to blame but yourself when the day comes in 2 years or 5 years or 10 years when you ARE having problems you can't handle, and you don't want that. Why not just make it easy on yourself and deal with the disease now before things get worse...if you think Celiac makes life unpleasant, try lymphoma.

Gillian

[KaitiUSA]

I see where you are coming from but ifyou look at the risks that celiac3270 put up there is it worth it. Your life expectancy goes down significantly and you are 40-100 times more likely to get cancer and other life threatening or disabling illnesses. Not just cancer but diabetes, osteoporosis, kidney/liver/gallbladder/pancreas complications, etc.

The diet is not bad...we can eat some really good foods. You can still enjoy a lot of food. Is it worth your life and health? You eat to live not live to eat ,which I think this country has that turned around.

There are no degrees in celiac...you simply have it or you don't and if you do you have to follow the diet.

Some people have symptoms and some don't get symptoms...but they still have it and still need to follow the diet. It damages your body..you only get one body and I think its safe to assume that if you find out one day at the doctors office that you have stage 4 cancer that you will wish you had done everything you could to prevent that ( my grandpa was diagnosed with stage 4 cancer one day and not even 6 months later he died...and I bet he was going over everything he could have done to help himself to decrease chances)

So don't just think about the now which they teach you to do now...think about the future as well.

[lovegrov]

I can look back and see that I had celiac as a kid and then for a few years in my 40s. My only real symptoms were DH, which I kept under control with dapsone, and a little fatigue. Then suddenly I was nearly dead and in the hospital for 11 days because of malnutrition. I missed 10 weeks of work and wasn't really right for nearly a year. This came on very, very suddenly. I was so weak I couldn't walk by myself or think clearly enough to hold a conversation. If your celiac is advanced enough to see on a biopsy, you will almost without question eventually get sicker and perhaps develop other autoimmune diseases.

richard

[mmm..gluten]

Magnus, I totally agree. I feel the same way as you do - occasional bowel issues, but other than that totally asymptomatic. I have only been gluten free for a week or so, so I haven't noticed any changes yet, but my initial reaction was exactly the same as yours. I still haven't decided what I think yet, but I have to admit I was laughing hysterically at the "kissing someone who ate gluten" thread. It seems so patently absurd that I damn near fell out of my chair. I was close to writing everyone off as a bunch of hypochondriac martyrs, but I figured I should at least give gluten-free a shot and see how I feel.

I'll report back after my next gastro appt in 6-8 weeks and let you know the findings, but I am still definitely on the skeptical side of the fence myself. I mean, come on, realistically, if 1 in 250-300 people have this thing and it's such a big deal, why do we not see the CDC, NIH, or whomever coming out and urging everyone to get tested? With a market this big, the drug companies should be all over this if it's that common! I just don't get it yet, but I'm open-minded enough to try it, read the boards, and listen to people with experience in it until I feel I can form my own opinion.

Just my .02..

[KaitiUSA]

Actually 1 in 133 people have it and studies have shown it may be as much as 1 in 100. Celiac disease is finally starting to get some attention because it was thought to be uncommon and doctors were not taught about it because of how uncommon it was. Now, things are different and alot of doctors do not know what they should yet but there has been alot of progress.

As for you being gluten free for a week...thats not enough time to even expect changes. It took me 3 months to feel really good again and a few more to get back to normal.For some people it takes longer then that and for some shorter...it varies but you can't say o I don't feel better after a week so screw the diet...if you have the diagnosis then you need to follow it...they dont just hand out a diagnosis for no reason.

I thought the same thing you did at first...I went through a denial stage where I think alot of people go through that.

Your lucky thats all the symptoms you had before diagnosis...at least they caught it before your symptoms got really bad. I for one had 2 years of pure hell before diagnosis and some went through it way longer then me.

The fact is that some people do not get symptoms with celiac

your fate is in your hands though...nobody can control what you eat but you

[luvs2eat]

My ONLY symptom that sent me looking for answers was diarrhea. Like you, Imodium was part of my daily diet. I had no abdominal pain (lots of NOISE, but no pain) or any other symptoms. It was reading about all the things that can happen down the road that convinced me that going gluten-free was mandatory.

I've been completely gluten-free for almost 3 years now... and almost 3 years later, I'm noticing new and different symptoms cropping up... arthritis-like pain in my joints (yea, it could be age, I'm 52) and I've had blood work to rule out Lupus.

celiac3270s list of other diseases related to Celiac is awesome. A must read.

Good luck.

[Canadian Karen]

Okay, mmm..gluten, I was ready to jump all over you with that post as it seemed that you were ridiculing everyone one here who, out of necessity, takes celiac disease as seriously as they do because of their level of sensitivity. But after thinking about it for a few minutes, we have to remember that people who have not lived with this disease for a long time and have only just learned about it quite often feel the way you do, especially when they have very mild symptoms or are totally asymptomatic. But rest assured, there are people out there who are so severely affected by gluten that even the slightest amount sends them into a tailspin of pain, sickness and quite often, a trip to the ER.

The medical establishment unfortunately, has long been "under educated" about celiac disease. Even my own doctor admits this. She says that in med school, they were taught that celiac only affects children, and mostly those malnourished with extended bellies. Well, doctors are only now just starting to realize the scope and magnitude of this disease, and the retail sector is not far behind. If I compare gluten free products on the market two years ago to what is available today, there has been an astounding "wake-up" the last few years. The number of gluten free products available now are 100 fold from what they once were. Even main stream shelf items at drug stores (vitamins, medications, etc.) are starting to print "gluten free" right on their labels......

mmm..gluten, you didn't mention how you came to be diagnosed. If your symptoms are so minute, how did you come to be tested for this disease? Just curious, since most of us end up suffering needlessly for over a decade before we finally get the proper diagnosis......

If you google up "refractory celiac disease", you might understand more why this disease is given the respect it deserves on this forum......

If you do decide to continue with the gluten free diet, we are really quite a bunch of helpful people who are always willing to help out in any way we can. There is not question we consider "stupid" on this forum, since this is such a difficult disease to wrap your brain around...... most of us are still trying to get it!! LOL!

Welcome to the forum.

Karen

[mmm..gluten]

Actually 1 in 133 people have it and studies have shown it may be as much as 1 in 100. Celiac disease is finally starting to get some attention because it was thought to be uncommon and doctors were not taught about it because of how uncommon it was. Now, things are different and alot of doctors do not know what they should yet but there has been alot of progress.

Interesting.. Hopefully this leads to more tasty gluten-free foods. Some of the stuff out there tastes like the packaging it comes in!

As for you being gluten free for a week...thats not enough time to even expect changes. It took me 3 months to feel really good again and a few more to get back to normal.For some people it takes longer then that and for some shorter...it varies but you can't say o I don't feel better after a week so screw the diet...if you have the diagnosis then you need to follow it...they dont just hand out a diagnosis for no reason.

Agreed, that's why I said I haven't noticed any changes yet. Notice I also never said "screw the diet". Jeez, you people are touchy. Must be all the crappy tasting gluten-free food! Anyway, how do they confirm that the gluten-free diet is "fixing" things? Another endoscopy?

Your lucky thats all the symptoms you had before diagnosis...at least they caught it before your symptoms got really bad. I for one had 2 years of pure hell before diagnosis and some went through it way longer then me.

Yeah, my doc said it was in the "beginning stages", although I am not exactly sure what that means or how he figured it out. Anyway, like I said, I'm going to give gluten-free a shot and see what happens.

[Emme999]

First of all, are you *sure* that you only have occassional bowel problems as your symptoms of Celiac?

Because I *never* would have guessed that I had any intestinal problems at all. I don't have diarrhea, constipation, or any of those other fun bowel problems. I do get heartburn after I eat grains, but other than that, I would have considered myself symptom free.

Fortunately, I have a doctor who got really worried when I told her I went to this "Free Bone Scan" test that some wacky chiropractor was having that told me that I have osteopenia (the precursor to osteoporosis). The testing system they were using was some cheap little unit that isn't very accurate and so my doctor sent me for a "real" scan (Dexascan). It turns out that I have osteoporosis. And without the Dexascan - I never would have known. I am active and physically fit. I was doing all of the things that should have prevented it (lots of calcium, exercise, etc.) but this is my big symptom - and it's completely silent. (BTW - I just turned 32 last month).

When I was a little girl I had no classic symptoms either - but the enamel didn't form correctly on my teeth. So, there's another common symptom of Celiac - but it isn't something that affects your everyday life, so no one tested for Celiac or (obviously) did anything about it.

As for not having symptoms - or thinking that they aren't problematic enough to bother you - maybe you ought to find out for sure if that's the case. It is extremely common for adult Celiacs to have bone problems (such as osteoporosis) and not have a clue.

There are a lot of varied, random *silent* symptoms that affect people at very deep levels. Be careful how you talk about the triviality of your symptoms. You might just not know.

[mmm..gluten]

Okay, mmm..gluten, I was ready to jump all over you with that post as it seemed that you were ridiculing everyone one here who, out of necessity, takes celiac disease as seriously as they do because of their level of sensitivity.

[KaitiUSA]

Interesting..  Hopefully this leads to more tasty gluten-free foods.  Some of the stuff out there tastes like the packaging it comes in! 

Jeez, you people are touchy.  Must be all the crappy tasting gluten-free food!  Anyway, how do they confirm that the gluten-free diet is "fixing" things?  Another endoscopy?

There are some great gluten free foods out there it's a matter of finding the right brands. There is alot we can have even at the regular grocery store...brands like Kraft are a godsend for us.

They can use blood tests to monitor compliance of the diet or they can do another biopsy in 6 months to see if the damage has healed..

I really am not appreciating the rude remarks you are making..please be respectful to everyone on this board...you will find we are on your side not opposing sides.

Keep in mind I was in your position at one point in time so I do know where you are coming from and if you need any help with what things you can and can't eat I would be more then happy to help. There are a bunch of brands that will list wheat,rye,barley,oats right on the label if they contain any and those brands are "normal" brands. You will find there is more good stuff to eat then you think. I know some of the stuff is crappy tasting but when you find the right brands then you may change your opinion.

[Canadian Karen]

mmm..gluten, forgot to mention something.....

I LOVE YOUR PICTURE!!! Is that what you do really? Work with dolphins? My daughter would TOTALLY ENVY YOU!!! Last year, when she was asked what she wanted for her birthday, she said, "Find somewhere where I can swim with the dolphins!!!!"........ (Unfortunately, that was not possible!)

Karen

[Canadian Karen]

I honestly don't consider us "thin skinned or touchy" here on this forum. See, most of us here have taken quite a different road to diagnosis than yours. We struggled, suffered, endured, begged for help, etc. for years upon years before we found a doctor that was smart enough to figure it out. I would have given anything to have taken such an "easy road" as you have taken. You really did kinda "fluke" into it.... So when it seems that, after going through hell and back, when someone comes on here who does not understand the pure hell we have been through, comes on here and ridicules how serious some of us have to take this disease, maybe our backs do go up a bit.......

Karen

[KaitiUSA]

Yes the picture is awesome!

[mmm..gluten]

There are some great gluten free foods out there it's a matter of finding the right brands. There is alot we can have even at the regular grocery store...brands like Kraft are a godsend for us.

They can use blood tests to monitor compliance of the diet or they can do another biopsy in 6 months to see if the damage has healed..

I really am not appreciating the rude remarks you are making..please be respectful to everyone on this board...you will find we are on your side not opposing sides.

Keep in mind I was in your position at one point in time so I do know where you are coming from and if you need any help with what things you can and can't eat I would be more then happy to help. There are a bunch of brands that will list wheat,rye,barley,oats right on the label if they contain any and those brands are "normal" brands. You will find there is more good stuff to eat then you think. I know some of the stuff is crappy tasting but when you find the right brands then you may change your opinion.

Yeah, I have been experimenting a lot with various foods and so far it isn't as bad as I originally thought it would be. I was already very careful with my diet and exercise, so this is just one added complication that seems manageable.

Thanks for the info on the follow-up. I was just curious how they did the re-examination and whether it was blood or endoscopy. Neither were very bad, so it's not a big deal, but it is something of a PITA to get someone to take you home from the doctor when you go for an endoscopy (totally unnecessary, IMO).

I don't necessarily think of it as rude, but more "direct". I am not the "OMG, help me, I can't have gluten, oh lawd, please, let's all go hug a gluten-free tree" type, but more a suck it up and deal with it type. Neediness, weakness, and babying make me want to throw the heck up and are one of the biggest problems in the country right now, IMO. Everyone wants something for nothing and has a serious case of "poor me" syndrome. I'll tell you one thing, go do some traveling in Somalia, Rwanda, or anywhere less privileged than here and I can guarantee you that people aren't "wheat intolerant", "soy intolerant", or "lactose intolerant"...they are HUNGER intolerant. So I apologize if the ridiculousness of it all gets to me at times, but really, we should all be thankful we are alive and have some type of food to eat!

I think I'll go have a piece of almond rice toast now!

[mmm..gluten]

I honestly don't consider us "thin skinned or touchy" here on this forum. See, most of us here have taken quite a different road to diagnosis than yours. We struggled, suffered, endured, begged for help, etc. for years upon years before we found a doctor that was smart enough to figure it out. I would have given anything to have taken such an "easy road" as you have taken. You really did kinda "fluke" into it.... So when it seems that, after going through hell and back, when someone comes on here who does not understand the pure hell we have been through, comes on here and ridicules how serious some of us have to take this disease, maybe our backs do go up a bit.......

Karen

I can respect that. In all seriousness, no offense was intended. I do consider myself lucky that I didn't have all the complications and symptoms that some people on this forum have had. Like I said, I'll shut up now and go have that almond rice toast..

[SharonF]

I fluked into my diagnosis, too. I didn't have majorly bad symptoms. I wasn't in the hospital for pain. Just some diarrhea that went on for too long.

But after I went gluten-free, I started feeling SO much better. Things I hadn't even realized were bothering me went away. So give it a real try, this gluten-free diet, and see if you don't feel better as well.

And you know, this is a board for people with Celiac. Of COURSE we're going to complain about the problems related to celiac and not the people suffering in Rwanda. That's what this particular little universe is about.

[mmm..gluten]

I fluked into my diagnosis, too. I didn't have majorly bad symptoms. I wasn't in the hospital for pain. Just some diarrhea that went on for too long.

But after I went gluten-free, I started feeling SO much better. Things I hadn't even realized were bothering me went away. So give it a real try, this gluten-free diet, and see if you don't feel better as well.

And you know, this is a board for people with Celiac. Of COURSE we're going to complain about the problems related to celiac and not the people suffering in Rwanda. That's what this particular little universe is about.

Good point. The funny thing is, a week into it, I am experiencing some weird fleeting stomach pains. I am positive it's psychosomatic, but it's pretty interesting nonetheless.

I'll stick with it though...I even bought a new grill so I can start eating more meat. The thing I hate is that I was considering giving up meat altogether before the diagnosis, but I don't see myself doing that now!

[Canadian Karen]

If it wasn't for meat, potatoes and rice, I would be dead by now!!! That is my main diet!

Karen

[mmm..gluten]

If it wasn't for meat, potatoes and rice, I would be dead by now!!!  That is my main diet! 

Karen

Yeah. When you guys talk about "getting glutened" I almost wish I could experience that. It's really difficult to tell what's safe to eat when you have no reaction no matter what you eat. At least with a reaction I could do a "note to self - don't eat BigMac ever again".

[mmm..gluten]

Yeah. When you guys talk about "getting glutened" I almost wish I could experience that. It's really difficult to tell what's safe to eat when you have no reaction no matter what you eat. At least with a reaction I could do a "note to self - don't eat BigMac ever again".

Here's a follow-up to that point that just occurred to me and helps steer this back on topic.

Is MUCH LESS gluten better than just ignoring it or is it a total all or nothing game? Does occasionally eating gluten accidentally have the same effect as eating whatever you want and ignoring gluten-free? It doesn't make logical sense, but I figured I would ask the obvious token stupid question and get it over with..

[tarnalberry]

I'd add that the "well, why should you really bother being that careful" attitude - albeit an understandable one if you don't get severe symptoms - turns out to essentially be poking an open wound around here. A newbie wouldn't know that, and wouldn't - in most cases - have read any of the stories or had any of the experiences to understand it, and I don't blame them for that.

The new folks who don't have severe symptoms, who haven't had this problem derail their life, who haven't spent years asking doctors to figure out SOMETHING, not only will those folks not understand the urgency and the importance that *finding out The Answer* may have in some people's lives, but they also haven't dealt with the family and friends who constantly question and deride the celiac's choice to follow the diet. So when celiacs come to this board, it's usually to escape having to be on the defensive, and, to a certain degree, get some degree of empathy/sympathy from a like minded crowd. One of our escape mechanisms, if you will. To see that ... strongly challenged in a skeptical sort of way from someone whom the celiac would try to identify with (because they also have celiac) is disorienting and can feel a bit like your own family turning on you again.

But that's a perception thing, and I think we can all realize that it wasn't meant to be a cheap shot or anything like that.

As for not experiencing many symptoms and hence not necessarily following the diet strictly...

I also don't have severe symptoms. I was not in and out of hospitals. I wasn't in and out of doctors offices. I didn't take days off of work. I didn't even have to rush to the bathroom all that often. I felt a bit bloated, had some uncomfortable (but not awful in any way) rumbling in my stomach, and was kinda more tired than I'd like to be. That's it. So I sympathize with not having many symptoms.

But the problem is chemistry. The molecule of gluten has a segment of amino acids on it, heavy in proline, that happens to fit nicely with a particular protein structure the immune system produces. When that happens, this combination of molecules can attach to other molecules and sets off a chain of chemical reactions (which I've read takes about a week to die down once the gluten is removed). If you've studied chemistry, mass balance, and rates of reaction and all that stuff, you can imagine the soup of molecules that is your intestines. It doesn't really matter how much pain or how severe your symptoms are, the definition of celiac is that these things are occuring.

When these reactions start occuring, still regardless of your symptoms, damage occurs, and inflammation occurs. Both of these things do seriously increase your chance of secondary problems. Osteoporosis, which others have written about, is one that you may not know about until it's too late, and that can come on very subtly. There are other vitamin deficiency issues which may not be obvious at the moment, because your body may have sufficient stores of some of them, but if you are absorbing at a slower rate (because of some level of intestinal damage) than you are making use of it, at some point, you're going to come up short.

The fact remains that untreated celiac - regardless of symptoms, and it's a pretty safe bet that a good number of those who don't follow the diet and hence end up in these studies are those who don't experience life-threatening or life-altering symptoms, decreases your expected life span by over 10 years. It increases your risk for cancers (primarily due to the inflammation process, an immune system always "on active" can be a dangerous thing), which you already know about. The complications associated with celiac disease are one of the reasons that insurance companies sometimes deny people coverage. They certainly take it seriously.

Finally, just because you don't have symptoms that you recognize now, doesn't mean - as other people have given examples of - that you won't later. While you're young, your body is better at healing itself of the damage that gluten is apparently doing to your body. As you get older, you'll find that your system changes, and you may well start experiencing symptoms that you could have avoided in the first place. (I hate that I can say that from experience even though I'm only 26. ;-) )

In the end, it's your choice. Many of us here would think that it's a foolish choice to eat gluten when you know that it damages your body, but that's from our perspective, and everyone needs to make their own choices that work for them and their lives. Don't let the food selection be the problem though - you can have pretty much anything you want, if you make it from gluten-free sources. I eat a much wider variety of things now than I did before being gluten-free.