Ok…now that I got that out of the way, let me explain. Celiac disease sucks. I know that. You know that. Not only does it suck, but there is so much bad info out there about our disease, that for the newly diagnosed, it becomes a minefield of fear. (And for those wondering what the heck Terminus has to do with this post, they made their decision partly based on fear. Never a good idea. Especially for Bob.)
Anyway, here’s an email I received that talks about living in fear with celiac disease. I’m embarrassed to say that I received this email in April of 2014. Yes…2014. That proves three things:
- Poor man wanna be rich.
- Rich man wanna be king.
- King ain’t satisfied til he rules everything.
Wait…that’s not what it proves. Those are lyrics to Badlands. Sorry. Here’s what it proves:
- I really do read all of your emails and save the ones that I want to respond to.
- My life is out of control crazy busy and I seriously need to find more free time.
- I’m totally lame.
On to the email:
I only just recently (like, yesterday) discovered your blog while looking for answers.Short background: I’m 51. I was diagnosed with celiac disease on 10/11/12. My diagnosis was a fluke; the G.I. I saw ordered an endoscopy looking for gastritis and discovered celiac instead. He knew next to nothing about the disease…he called it a gluten allergy with no cure and the only treatment was a gluten-free diet for the rest of my life. But he said I could occasionally cheat, gave me a few pamphlets and sent me on my way. It took 30 seconds on Google when I got home to discover that what I had was far more serious than simply an allergy, and that it was NOT ok to cheat. I was sick, scared to death by what I read and overwhelmed by conflicting information.
I joined a couple of online celiac support forums and posted some questions but quickly backed away because the only responses I seemed to get were from fear mongers who took great delight in posting links to articles linking celiac to long-term complications and cancer. Nothing I found offered any hope, nor could I find anything online posted by upbeat celiacs with a positive attitude about their disease. I struck out on my own, learning how to read labels, calling companies about the gluten-free status of their products, and slowly educating myself and my family about the disease and living gluten-free.
I was very fortunate to have responded to the gluten-free diet quickly…within 6 months all my symptoms resolved themselves and within 9 months I gained back all the weight I lost, and then some, thanks to discovering Trader Joe’s gluten-free cupcakes. I have never cheated and take all my supplements, including a probiotic, every day. I feel well and back to working out regularly and feeling more “myself” again.
But I’m still occasionally haunted by many of the things I read during my research immediately post-diagnosis. Things like being at increased risk of developing long-term complications, heart/thyroid issues or other autoimmune diseases (two first cousins on my father’s side have MS so it’s a legitimate concern). I’m not as worried about cancer after reading a legit article online that the vast majority of celiacs do not develop it. No one has ever explained to my satisfaction if those risks apply only to undiagnosed, untreated celiac. Should I still be concerned, especially if I’ve never cheated since going gluten-free (occasional accidental exposure notwithstanding), have responded well to treatment, am asymptomatic and all medical tests to date show everything’s fine? Even my monocyte levels were normal at my last blood test. They were through the roof at time of diagnosis.
My biggest fear is having a shortened life span due to the disease, and the conflicting information I read online does nothing to allay those fears. I suspect my mother has undiagnosed celiac based on her medical history. Yet she’s 87 and still relatively healthy. My nutritionist also reassured me that based on my genetics (my father is also still alive and healthy at age 93), and as long as I continue to live a healthy lifestyle and don’t cheat there’s no reason I can’t live a good, long life despite the celiac. But I’m still haunted by that fear and it’s the one thing holding me back from enjoying life.
I love your blog. I love your supportive community of readers. I intend to keep coming back every day. It’s a good thing I’m self-employed; I probably would have been fired by now as I’ve just clocked three hours of reading and posting today.
Keep spreading the word and offering support and hope!
First off…wow, your doctor sucks. He called it an allergy and said you can cheat? No words. None at all.
For the newly diagnosed, here is my advice:
Live your life. Do not let celiac hold you back. It’s a bump in the road, but it’s a bump that is manageable. I promise. Yes, you’ve got some serious adjustments to make. Yes, your body will take some time to heal. Yes, you will lose a little bit of freedom and spontaneity in your life.
But you know what? You’re getting your health back and that’s what matters.
Will celiac kill you early? I don’t know. But if you knew it did, would you live your life any differently?
There is an unbelievable amount of fear-mongering online. “You can’t have this” and “you should stay away from that”. Some of it is accurate. Some of it is complete BS. Just stick with the facts.
Do not live your life afraid to do things simply because of GLUTEN. No matter what people say, it’s NOT everywhere and you CAN lead a normal life (with a few adjustments). Take precautions. Educate yourself. Use common sense. And if in doubt, do without.
And if you have any questions about something, just ping me. I’ll set you straight.
It just may take a year 🙂
22 thoughts on “Do Celiacs Have to Live in Fear?”
Just today I had to correct a well meaning article written by a nutritionist on living with celiac disease. In it, it said celiac disease could lead to other autoimmune conditions like Type 1 diabetes and MS. Talk about fear mongering!!!
Yes, research has shown elevated celiac (11%) rates among those with MS and plenty of autoimmune diseases strike in pairs probably because immune system screwiness in general with us… BUT no research that I’ve found has shown untreated celiac can cause other diseases.
thank you again, Dude, for being a voice of sanity in a wilderness of misinformation.
Having any autoimmune disease, including celiac, does in fact make a person more suseptible to developing other autoimmune diseases. It all comes down to the immune system malfunction that causes the inability to distinguish self-antigens from non-self antigens. Once this immune malfunction occurs it leaves genetically predisposed individuals more suceptible to developing other autoimmune diseases. In addition, untreated celiac disease causes tissue damage that causes the proliferation of autoantibodies. These autoantibodies can then cause damage seen in other autoimmune diseases if there is a genetic predisposition.
I meant to add-that’s one of the many reasons why adhering to a strict gluten-free diet is so important. Our autoantibodies diminish substantially when we take gluten out of the picture (how lucky we are that we are not only aware of what causes our autoimmune response, but we have the ability to refrain from it!). This means that many celiacs can essentially life long and healthy lives as long as we stay away from the gluten. Obviously this varies by person as many celiacs are diagnosed only after extensive damage and other diseases have presented.
As someone with 4 autoimmune diseases and the last one diagnosed as celiac, I might have to disagree with you. 🙂
Sanctuary! Thanks, GD, for a great laugh!
I, for one, am not worried about a shortened lifespan. But then I’ve already lived a long life, and if celiac pares a year or two off the dwindling remainder, how could I tell? I am sure that my remaining life will be much better for having gotten the diagnosis and going GF. Things were getting kinda crappy pre-diagnosis (pun not intended, but recognized), and I was thinking that most of it was just old age. Turns out it wasn’t, and I’m feeling better now than I did any time after about three years pre-diagnosis.
My own opinion is that now that I’m gluten free and seem to have recovered pretty well from the active celiac, my chances of getting cancer or having thyroid problems or any of the other things associated with undiagnosed celiac disease are no worse than they were before something activated celiac in me. I suspect that there were some gluten-related problems many years before (what I think of as) active celiac disease set in. And if so, and if I my system is not getting those particular forms of irritation any more, I may be somewhat better off with respect to some things. But all this stuff is so vague, and so many things are so difficult to study, that I’ll never know. But what I do know, for sure, is that I’m feeling lots better than I was pre-diagnosis. And that’s good. Real good. I can live with that and be happy about it.
And that’s what it’s all about. Thank Dick.
1. Untreated Celiac disease can lead to other diseases.
2. Celiac disease is the easiest disease to treat..with diet/food. I told someone this week I had celiac disease…their response ( a medical professional) was “what pills do you have to take”? My response none…I just eat real food without gluten and feel fabulous.!
I hear ya…I just wish it was that simple for me.
Asking a question like ” does untreated celiac cause other autoimmune issues” is like asking ” what came first, the chicken or the egg”? With each autoimmune disease you have, you have a higher chance of getting another. How do we know that those that were diagnosed later in life, that have multiple AI’s, didn’t get the other AI’s from untreated Celiac? We don’t. I was diagnosed with two other AI’s before the Celiac and I wasn’t diagnosed until I was 37 after a lifetime of celiac symptoms. Will my daughter also get other AI’s since she was diagnosed early in life? Time will only tell, as will genetics. Both my parents have multiple AI’s, I’m predisposed to them anyway.
Its true what he says that many articles about the impacts of celiac fail to mention if they are talking about treated celiac or untreated. It seems to me that people appropriately treating their celiac will not have their life shortened by celiac.
my mother and grandmother, diagnosed later in their lives, definitely did “cheat” very often i believe because of two things: adults are addicted to some foods with gluten (bagels, pizza) and so it is harder for adults to go GF, and even ten years ago or so there was not the same understanding in the medical world that no gluten means …NO GLUTEN.
and so they both had symptoms and probably blunted villi which led to symptoms that seem typical of malabsorption. they are now both deceased. did celiac kill them. I don’t think so, but i do think that since their celiac was not treated correctly they had ongoing symptoms that certainly impacted their overall health.
now as a father i have a daughter with celiac, diagnosed at 3.5. she has been 100% GF for 3 years now, in a 100% GF household and she is a picture of health and has never had a single symptom or even a nutrient deficiency even when her scope showed blunted villi. We are very careful about cross contamination when we eat out or travel. I expect her to have a healthy, fearless life as long as she continues to stay off gluten.
which is not to say that the disease doesn’t suck, it totally sucks and my heart breaks for her at times. but she is a very happy and healthy little girl and i can’t ask for more than that.
Daniel, very well stated. Your daughter is fortunate to have you & your wisdom guiding her and as she gets older and makes her own food choices to continue listening to you and her family history.
I agree being fully informed and as knowledgeable about our health circumstances as possible leaves little to no room in our hearts and minds for fear.
As a 54 yr old male with a grown daughter, my personal experiences with Celiac Disease have revealed to me that our individual responses to CD comprise a sliding scale spectrum. On one end are those of us who may be NCGS, in the middle are those of us who have full blown CD and on the far end are those of us with many varieties of complications from CD including many autoimmune related conditions and/or related various cancers.
My 79 yr old Mom and I currently reside in & around the not diagnosed soon enough cancer end but CD in no way makes us live in fear. Mom was recently healed from Stage IV lymphoma for the 3rd time after the chemo quit working and started harming by simply not eating gluten. I’ve had 3 different types of related cancers and my out of whack blood work is currently somewhere between chronic inflammation and leukemia. Last week I stopped eating out at all again in an attempt to reduce the systemic inflammation. For me, even unanticipated cross contamination, for example, from wheat factory nuts in my publicly purchased salad is too much gluten. So I’m eating great whole foods only at home again prepared by me. I’m feeling much better already and hope next week my blood test results will reward me for my effort. I’m inconvenienced some by always having to prepare my own food every meal but NEVER AFRAID because I know what I must do. My GI said last week that I’m still a medical mystery with some of my complications but agrees this is a solid conservative plan in the meantime.
So I think our mission together, if we choose to accept the challenge, is to determine where each of us currently resides on the CD spectrum by sorting through all of the white noise, garbage, golden nuggets & personal truths regarding the level to which gluten personally affects each of us at various times in our lives. Also we must realize we may change residences on the CD spectrum along the way due to our genes. We should happily get to know any new neighbors on the spectrum as we age but never be afraid to introduce ourselves and learn all we can and share responsibly with others while on our journey.
Gluten Dude and his compadres are a great sensible supportive group with which to travel the Celiac Express and enjoyable people I would not have met without CD. I don’t waste time thinking about a shortened lifespan. My Mom has also weathered through 3 brain aneurysms & 2 brain surgeries and has been given various periods of time to live from hours to months. Now 22 yrs since her first “fatal” brain aneurysm she is kicking relatively high again today since her orthopedic surgeon released her this morning from her latest frolicking escapade.
I wish you and your daughter all the best things in life! Staying away from gluten in any amounts & all forms for life is certainly a key for me but a price I’m more than happy to pay for good health and no meds.
So awesome Daniel. She’s in good hands.
I’m sure we’ve all gone through that stage after our initial diagnosis and we just have to tell ourselves to calm down. Nothing in life is certain. Focus on the positives and don’t worry about the unknowns. You can only do what you can do which is to take care of yourself. The rest is out of your hands so don’t waste precious energy and time worrying about it.
And remember when reading the articles about research findings – correlation does not equal causation! What I mean is that while a study may show that a high percentage of people with Disease A also have Disease B, it does not mean Disease A causes Disease B. There are so many variables that can be involved. Just look at that kind of information as being helpful for what to be aware of but don’t take it as an ominous sign that life is over. It is easy to fall back into that fear trap any time you are feeling low. 🙂
If you have any untreated ailment and don’t care for it your risk of somehow becoming sick in another fashion will always be higher. Bottom line- live gluten free, heal, move on.
When I was first diagnosed with celiac I experienced the EXACT same thing as the individual that emailed you: I perused forums for support and found nothing but negativity and people constantly complaining how they couldn’t do anything because of their disease. It was a lot of “woe-is-me, life sucks, and will get even suckier”. The disease was the constant fixation and there was a lot of doom and gloom of how much worse it will undoubtedly get down the road. You know, I realized that though I have a couple auto-immune diseases (and likely will develop more), I also have accomplished more than I ever dreamed possible AFTER my diagnosis because I simply had to fight HARDER and kick a little more ass. Sure, celiac sucks, but if I constantly fixate on the diseases I have and the ways it can possibly hold me back, it will do JUST THAT. Instead I look at the things I CAN DO, DO THEM, and EXCEED my expectations. Look for the strength within yourself, and don’t fear the future, because living in fear will hold you back from accomplishing what you once found to be impossible. Good luck to all of you, and I wish you the very best!
I read about a disease where you can’t eat meat. Many people can’t eat peanuts or wheat or dairy etc. people with gout have a no no list. Diabetics. I’ve found people don’t become negative after diagnosis they already were. It’s a bummer. Sure I hope there’s a cure. There will be rough spots. But it’s MANAGEABLE!!!
The Gluten Free Revolution is a really upbeat, sensible book that’s helpful for supporting the sudden change to a gf lifestyle with all the concerns a newly diagnosed celiac may have. The sections covering medical issues are a bit short but still detailed and the author is definitely a success story.
The main problem with gluten free is eating out, especially on vacation. I’m a silent celiac and only very occasionally feel any symptoms. I’m very tempted to cheat during my annual two week vacation – bread, burgers, donuts. No beer is a problem too, but what about those beers which are low gluten? For example, Brooklyn Lager’s website states that its beers are below 5ppm, which is way below the GF threshold of 20ppm. Could I knock back 15 or 20 of them (or 5 with a bottle of whisky) in a night and be OK (I don’t really get hangovers)? Or do I need to stick to the Dauras and hard cider?
I know celiacs who dont respond poorly to beer. But I don’t drink beer so I don’t know. I’ve cheated on vacation but never gratuitously. I’ll have a little bit and gfd as soon as I get home. I don’t understand the insane vigilance. People can lie to you. Unless you’re literally growing your own food and making your own meds you’ll never truly know. Do the best you can! I believe I’m 99% gf and it’s good enough for me. Also hopefully that vaccine will work for small gluten exposures.
Love the reply!
Let me be reassuring
1) there have been suggestions that asymptomatic celiacs with no colon damage but abnormal antibodies may not be at risk at all
2) celiac is very under diagnosed. That makes it much harder to perform adequate longitudinal studies. You’re sampling people with moderate to severe symptoms or relatives of those people
3) there’s no evidence to suggest a shortened lifespan even among cheaters. The fact is celiac does raise risk of lymphoma which is still pretty rare. But because it’s often deadly OF COURSE celiac shortens lifespan. You’re includinb the lymphomas. Most who get lymphoma suffered severe symptoms continually. There may be a subset sadly of celiac sufferers who don’t respond properly to gfd and this subset is at highest lymphoma risk
4) celiacs who follow a gfd have no lifespan decrease
5) everything online is negative! Be positive. Pretend you lived before the cultivation of wheat. I cook more and eat healthier than I ever did. I avoid most gf products bc they’re crap. They can’t even fortify them. Why??? The breads are so calorie dense yuck. But so much natural stuff is gf.
The evidence against oats is weak to zero (it seems to be cross contamination in the cases it does) so I get my grain fix from eats.
6) your lifespan is most determined by your parents lifespan, genes, dietary and athletic habits, social network, whether you engage in risky activities, and how you keep your mind active. Live healthy. If celiacs were all dying significantly younger how would you not notice?
09.17.18 I live with a recently diagnosed celiac patient (07.2018). He has been GF since the diagnosis. We have created a GF zone in the kitchen. We keep whole grain bread in the bread box opposite side of the kitchen. Separate butter, condiments, etc. While he eats GF he continues to have severe stomach pains/cramps, nausea, diarrhea. He eats sporadically. He says just thinking of eating makes him nauseas. He is 64, quit his job, now has no insurance. I cook GF. The doctor stated he is not lactose intolerant, so he does continue to drink milk. I can’t find any websites that specifically discuss daily life with celiac. I don’t know if his symptoms/behavior is typical or not. What I do know is that a negative attitude, moaning and groaning about his disease is impacting our home life. I am a diabetic (3 years) who had a mild heart attack 8 years ago. I am at my wits end, any advice?
Ok so I am one of those people who has embraced this disease. I was diagnosed 3 years ago and I think it’s the best thing that’s ever happened to me. All my symptoms were gone in one month and I felt like a young vibrant woman again. I lived 8 years with symptoms that progressively got worse. For 8 years I ran from doctor to doctor fearing I had cancer. Today I am gf and eat lots of fruit and veggies and I’m not tired anymore so I’m at the gym 3 times a week and I’m waking up early re freshed and ready for a new day.
I only wish I was diagnosed earlier!
I love my new life. I feel alive once again! And yes like all of us sometimes I wish I could just smash down a KFC burger and Maltesers!! 😁😁