What Turned Your Celiac Genes On?

The amazing Mexico City

 

Lago de Atitlan, Guatemala

Some research on celiac disease suggests that something triggers it, something starts it up. We are born with the genes to make developing the disease possible. It’s not certain that we will develop it but if we do it will probably be as a result of a trigger of some sort such as severe stress, physical trauma, pregnancy or viral infection. Can you pin point something in your life which could have triggered your celiac disease?

I have a few celiac friends who can pin point the start of their symptoms to a particularly stressful time in their lives and others for whom their trigger may have been a serious operation which they had. In my case I feel that it was a combination of a couple of different things. The first was an extremely stressful and terrifying event which occurred whilst travelling in Guatemala back in 2007. For six months John and I travelled over land from Iowa to Honduras, stopping off at a lot of exciting places en route. This trip was amazing, the only exception being when our bus was hijacked in Guatemala city en route to El Salvador. On boarding the bus we had to walk through a metal detector to ensure no passengers were carrying concealed weapons. We should have been safe but when our bus pulled over at the side of the road, 10 minutes into our journey, to pick up two gun carrying passengers we were in serious trouble. These two delightful gentlemen then proceeded to walk up and down the bus robbing us of our possessions.

This was absolutely terrifying. Could something like this be enough to trigger an autoimmune disorder?

The second thing, and what I think may have triggered it for me, was when John and I moved to the UK in the summer of 2007. This was a very stressful period for me. I had returned home after 2.5 years of living and working abroad and I had no idea what I wanted to do with my life. John didn’t even have a visa allowing him to legally work in the UK.

I became very depressed. I wasn’t the nicest person to be around. This was not a good time for me at all. Could my stress and depression have been the trigger?

I would love to hear your opinions and experiences on this issue. Can you clearly identify an event or time when you started to develop symptoms of celiac disease? Do you consider this to be what triggered it?

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Comments

  • I can trace it back to when I was in the Sheriff’s academy about 8 years ago. I was coming down with the flu the night we got Taser qualified. I was Tased for 5 seconds as part of the training. I didn’t fully recover from the training and flu bug for weeks. It really set me back.

  • Nice post Laura!
    Mine (I think) was my first year of university, I was 17, moved away from home and lived the proverbial student life of pasta and noodles for breakfast, lunch and dinner. It was quite a stressful year as I decided to take an undergraduate course in something I knew nothing about (12 years later and I’m not sure I still do know anything!!). I got an horrific stomach bug which lasted 3 weeks (I managed to sit my winter exams against the advice from the doctors and passed). Ever since those 3 weeks of sickness my stomach never healed again until celiac DX…

  • In 2007 I was admitted to ICU with blood clots in both lungs and almost died. I had stomach pain off & on. I sent a stool sample to a lab in Dallas, TX. The result was just out of range so I did not go gluten free. As the years have passed I have become very sensitive & have gone gluten free. I also have a rare form of Muscular Dystrophy & Fibromyalgia. I am 48 y.o. I was recently dx with low thyroid & high blood pressure. I did triathlons & rode my Harley up until 2006. It has been a strange journey.

  • Thanks a lot for your input guys! It sounds as though most people can pin point the trigger which started it all.

    Perhaps one day there will be a way of preventing triggers such as illness and stress from kicking off autoimmune disorders like celiac disease in those of us who are susceptible to developing it!

  • Interesting reading. Preventing the trigger ‘step’ is a fascinating idea – although I’m not sure any scientists are working on this or anything similar; I’m not even sure whether it’s theoretically feasiable, or not. I guess the Australian vaccine is sort of the closest thing: this ‘triggers’ tolerance, rather than stopping triggering intolerance, though.

  • Alex, I feel as though if it isn’t feasible at this time it will be at some point…here’s hoping!

    I’m assuming the Australian vaccine (if it worked) would be offered to people who have already been dx with the disease in order to allow them to tolerate gluten again? A ‘cure’ would certainly be fantastic. Something preventative, so that no one has to suffer from all the horrible symptoms in the first place, would be even better.

  • The main trigger for me was a Clostridium Difficile infection at age 28. No clue where I contracted it as I wasn’t in a hospital where most people get it. However, looking back, I can see some minor symptoms a year before when I was training for my first marathon. But it wasn’t until after the C. Difficile that I got really sick.

  • Great post! I wish I knew exactly what turned my celiac on, but my best guess is a combination of: abdominal surgery due to ectopic pregnancy, then a later C-section, or possibly a bacterial infection I may not have been aware I had(?) … wow, what a story about your hijacking in Guatemala, must have been terrifying, glad it didn’t keep you from continuing to explore the world!

  • Great post Laura!

    I was diagnosed really young, so I can’t pinpoint any Celiac Disease triggers. Although, I can most definitely pinpoint when my thyroid disease issues started last year. I was living in a black-mold-infested apartment, unbeknownst to me, and once I was getting over the mold issues my thyroid went nuts.

    I know my sister was diagnosed after a very high-risk pregnancy with twins. We are sure that triggered it.

  • This is a great post. Similarly to one of the other posts, University and a horrible stomach bug, my stomach never really recovered from that. Until last year where I experienced a family loss, I started getting intense stabbing pains which people thought might be from the stress of all of it, but actually led to me getting diagnosed!

  • My trigger was an abusive relationship, causing a few years of extreme physical and emotional stress. After a year of being in the relationship I developed fibromyalgia, and after another six months a lot of celiac symptoms. The fibro went away after going gluten free!

  • Celiac Rambler

    Mar 1st, 2012

    I had a very stressing childhood where nearly every day was fight or flight mode. I had been labelled PTSD at 13. But there were times where I could ‘run away’ and be in nature for hours on end. Those few times were heaven for me.

    I was in psych 2 times in my teens, the last week before leaving the hospital my doc back then told me I had hypothyroidism. I had more stresses for years afterwards along with a tough overtime, under-appreciated, and underpaid job. I began getting sick, my back so tight from inflamation and over-work, so eventually I quit my job and ended up ‘quitting’ life as the stress was too much.

    It is saddening but I’ve been ‘giving up’ on life for about 10 years now. It was just too hard to compete with a ‘normal’ life where food, people and who-knows-what-else was quite literally out to get me. ‘Fibromyalgia’ sounded like a nice diagnosis to describe the body pain and other digestive issues, if only as a label to state “Look, it isn’t just all in my head!” But I never got tested for it, or anything else, the other docs felt it was all just depression.

    My thyroid was never stable (TSH so high one doc said I should be dead), tried reducing meat for more veggies and nuts a few years back to help with proper fiber and nutrients.

    I then found out about 2 years ago through trial and error that gluten really does bad things to me. Lactose is difficult as well, but I seem to be doing okay with lactose free milks and tablets like Lactaid. I reduced my gluten (avoiding breads but accepting tiny ‘unknowns’ in processed foods) which helped a lot.

    Took a general allergy test back then that said I wasn’t celiac but the ‘real’ tests cost over $100. Even so, I wouldn’t want to have to eat gluten every day for a month and feel awful just to test what I already suspect. I wish there were easier, cheaper tests. Maybe 10 years from now.

    I’ve good news though. So bear with me.

    This week I discovered a possible link to some of my physical problems, Dermatitis Herpetiformis is similar in a ways to Celiac disease in that gluten + iodine salt cause terrible things to happen to my body. I’ve read somewhere that a test can be made with much less difficulty than a celiac one (via skin sample) so I’m going for that asap.

    I’ve also begun looking into a Primal (similar to Paleo) diet, interestingly it has a lot of the foods I always loved and felt comfy with as a kid. I’m also blood type O so a meat diet fits, which I will increase more of. I really really tried the vegan thing, I even wished I couldn’t harm plants – imagining myself in a happy world where all of nature gets along – but I’ve come to accept that I need meat to thrive, let alone survive. I reason that if I’m healthy and happy, I can use my new-found energy to help inspire others through my work.

    Along with gluten, I’ve also greatly cut down my salt (I use sea salt if any, rather than iodine), MSG (and its many alternate names), and have started growing a dislike for unnatural sugars, though even honey and 80+pure dark chocolate can only be eaten in small amounts before I feel saturated with sugar.

    And a big thing to add to the mental side…this year I’ve finally learned to live again by fully letting go of my worries. I don’t just count to ten, I literally have begun training myself to relax instead of tense up. If a bad thought (I have something akin to Schizophrenia on bad days) creeps in I pretend they’re Internet trolls, “So what?” I say or ignore them and try to view the thought as if I had no connection to it at all. Somebody elses’ problems. Then I can more easily see a solution to the issue.

    If a bad thought says I can’t do something I go “I might fail, but I don’t care what you think.” And focus on that attitude, ‘I’m too busy enjoying myself to worry” or “Sure I’ve failed before, I might fail again, but at least I can laugh about it this time around.” They can’t get me there, you can’t be broken if you’ve seen it all.

    It was very difficult to get to this point [I know I'm not over PTSD but I can at least see it coming now and manage it from there], and took a lot of inner-reflection to dig through a terrible Hand-Me-Down belief system, but I knew if I didn’t cut my stress to nearly nothing then I could eat the best foods in the world, have a perfect exercise routine, and still feel ill; as my immune system would stop proper digestion and attack the body, among other things.

    Sorry for the ramble, but maybe this chatter will be useful to somebody out there. If only, that you know you’re not alone and things can and do get better. Keep on trying, surround yourself with good people, food, nature, and keep reading inspiring stuffs (like this blog!)

    Thank you, Gluten Free Traveller.

    -Celiac Rambler

  • I was diagnosed with bladder cancer six months before my celiac diagnosis, but I don’t “think” the two were related. Yet I do believe the release of the celiac gene is stress related in some form. Would be nice to know, wouldn’t it?

  • Surgery.

  • Mine seemed to get triggered around the start of puberty – But I was also a stressed out little kid, so maybe stress triggered it?

  • Wow that sounds like some scary times for you! I believe that it was my very stressful job that triggered it for me.

  • Thanks so much for sharing, everyone! This topic fascinates me and it seems that most of us can identify some kind of stress trigger, whether physical or emotional, which may have turned our celiac genes on..

  • I have read this before…that of a stressful event triggering things. I moved 6 1/2 yrs ago. Now, we’ve moved all over the country many times. But we had found our way back to WI for a second time and I was VERY happy to stay there forever. My husband’s job forced us to move to MI. I THOUGHT I was taking it in stride, but as I was house hunting, I had all kinds of extreme health issues (premenopausal) that I had never dealt with before. Obviously, a sign that my body wasn’t handling the stress as well as I thought. Six months after the move, ALL KINDS of foods SUDDENLY started giving me such problems. I saw my doctor, an allergist, a GI and my doctor again….all with not much help. That covered several months and I gave up right then and there. I got online and did my own research and learned so much more than any of my “doctors”. So I decided I could live without an official diagnosis….I knew what I had to do and it wouldn’t matter if it was official or not. So I’ve always “blamed” my trigger being moving me away from WI and to MI. To make matters worse, its been my least favorite and, of course, its the one that we’ve been the longest and no signs of leaving anytime soon.

  • Celiac Jen

    Jun 14th, 2012

    I really enjoyed this post and reading everyone’s stories. My symptoms started around puberty, but this recent/horrific flare in my 30s is what finally got me diagnosed. Two out-of-state moves, stressful job, job change, family issues, wedding + long term antibiotic course/steroids for chronic sinusitis AND severe food poisoning within a 1.5 year period led up to my debilitating symptoms. I’m glad to FINALLY know what it is. I went through a pretty bad flare-up in college where symptoms became much worse (almost passed out all over campus), but that doesn’t compare to this bout. I wish it didn’t take such an extreme to finally get a diagnosis.

  • Summer of 2009 was incredibly stressful. Fellow employees had just been laid off. The rest of us took on new assignments and more work. I found myself sitting at my computer for hours and hours without a break on deadline days. Preparing for a vacation meant I was on my own with no help. Everything due during my vacation had to be completed before I left. The stress never let up.
    By the middle of the summer I started to experience joint pain. It got worse by fall. A rheumatologist diagnosed the pain as psoriatic arthritis, based on a tiny patch of what she thought was psoriasis on an elbow. I took physical therapy for about a year. She prescribed a sulfa-based drug – which did nothing for me other than trigger an allergic reaction. She wanted to put me on methotrexate after that. I wasn’t convinced I had arthritis so i wasn’t about to take any more drugs. Meanwhile, my vitamin D, iron and B12 levels had fallen. Something finally clicked and she checked for celiac, calling me out of the blue one day to suggest I see a gastroenterologist. I did and three years after that stressful summer, I was diagnosed with celiac. I’ve been gluten-free for six months…the pain hasn’t totally disappeared, but has lessened.

  • I got a bad case of food poisoning (“stomach flu”) from which it seemed I never recovered. My stress level was also very high — divorce and a new job that was overwhelming. After five years of constant symptoms I was finally diagnosed with celiac disease.

  • Thanks for sharing your stories! This is certainly an interesting topic and it sounds like so many of us can identify a possible trigger.

  • I was diagnosed after my daughter was born..i’m thinking the stress of labor/new baby? I had my son 4 months ago and just recently was diagnosed with hypothyroidism. I don’t know if it’s a post-partum thing I developed or if it’s b/c have the celiac disease and since thats an auto-immune disease, you’re more susceptible to get more. I would be so happy if a pill came out that was safe for all of us, so I could eat some of the foods i’ve missed for the past few years.

  • I’m not caeliac but am on the FODMAP diet, which excludes gluten, lactose, soya and fructose. It’s been a couple of years now and I have worked out a theory of what happened.

    I first developed symptoms during my 2nd year of University. One day I noticed I was feeling quite nauseous and generally run down. I assumed it was a bug and didn’t think anything of it. Then, a few days later, I went out for drinks with friends. I didn’t drink much, still feeling bad, but became violently sick when I got home – I just assumed it was the alcohol, and the next day suffered from what I thought was a bad hangover (I had never had a hangover before).

    The hangover didn’t go away and after a few weeks of misery I realised something was wrong. This is when I started going to doctors (who were completely useless) and then experimenting with my diet. I don’t think I am caeliac as it seems to be a mixture of different foods that give me a reaction, and settled on FODMAP on a friend’s advice (it has worked wonders).

    The way I explain it to doctors and friends is “a stomach bug that never went away”. The only explanation I can come up with is that I somehow picked up a bacteria while travelling in South East Asia. The friend who recommended FODMAP has a theory that he caught a bug while travelling, the bacteria laid dormant for a while, and then something triggered it (which could be what happened to me too).

    I’m still not entirely sure of the cause, but since the doctors aren’t helping (the last one I went to refused point blank to investigate further, and blamed it on stress, again) I am sticking to FODMAP, as it’s the only thing so far that has made a difference.

  • I was diagnosed a year ago after several months of many different symptoms. We believe menopause triggered it. I should have realized it earlier as our granddaughter was diagnosed at 18 months when she “failed to thrive.” She is now 4 and doing great. I can remember thinking at least she won’t know what she is missing and how I didn’t think I would make it if I had celiac. Strange how things work.

  • Mine was triggered when I got horribly sick in Mexico City. After that I kept getting sick every few weeks until I was diagnosed six months later. At the time I had just finished the extremely stressful first year of my doctoral program as well, so that couldn’t have helped either…

  • This subject so interests me. I thought I was the only person in my family to have problems with gluten but a (maternal) great-aunt has just found (she’s in her 80′s, bless her) that her gut has behaved much better since she recently started going gluten free.
    My gluten free journey began about 6 months after the birth of my daughter. She had a tummy bug, I caught it and then the gut didn’t appear to recover. This followed probably the most stressful period of my life to date, due to difficulties I had in pregnancy, my daughter’s early entry into the world due to HELLP syndrome, her jaundice, her tongue-tie (not treated initially), the discovery of the intolerance to cow’s milk and the problems I had with feeding her due to terribly cracked nipples (for which I had antibiotics).
    Part of me thinks my gut was blasted by the antibiotics, and was left unable to recover, when I caught the bug, but part of me wonders whether the problems I had in pregnancy and the miscarriage I had previously were indicators of an underlying problem with gluten that just hadn’t showed itself.
    I particularly think this now that my great-aunt’s problem with gluten has come to light and since I have discovered that certain other health problems, related to people with coeliacs disease, are present in my family line. I am particularly interested that so many people responding to this post have had thyroid problems. That too is in my maternal family line. I really wish some medical person could definitively ‘draw up the dots’ and make the connections for us!

  • Sarah Savery

    Sep 11th, 2013

    My son’s started in year 6 with a horrible tummy bug, which just never shifted. Stress of sats? Took 7 months to diagnose.
    Never sure whether the bug was a trigger, or whether he’d had silent (ish) symptoms for years we hadn’t picked up. He has slightly ridged teeth – lack of calcium from malabsorption? He’d always had problems absorbing orange juice/junk food – but seemed fine with gluten. Holidays in France though, when we would go wheat crazy (croissants/pain au chocolat, baguettes with every meal) had caused problems. No one else in the family diagnosed – and we’ve tested, but lots of family members with similar symptoms, which have been put down to IBS. I do wonder whether we have the gene, but not suffered a trigger.

  • Pregnancy plus family illness plus dangerous labour c section and no sleep for two years. Now have hypothyroidism and coeliac disease.

  • Stephanie

    Oct 2nd, 2013

    I was very healthy and happy during my pregnancy in 1986-87. After my daughter was born I started to feel very tired, didnt loose weight, and over the following 10 years had gallbladder disease, host of gastro issues, migraines, etc. Became so toxic and in such pain that I became depressed and very desperate to find the reason for my poor health and many disorders. Diagnosed by a blood test and a GF diet….life changing!!! Lost all of forties due to symptoms which were devastating to me and those around me. Looking back I do not know how I managed to get through each day. I was in chronic pain and severe depression. But so glad to finally have been diagnosed.

  • Hello , I can remember getting ready for our corporate challenge competitions ( a friendly competition between businesses in the area) and I was signed up for the 400 m and the 800 m run. A few days before the race I got the flu. I went to the race but had to get someone to race for me as I had no energy at all. ..I felt terrible.

    For about a year after that point (looking back now), I had issues with my gut, bloating, major weight loss, stomach pains. I was seeing a holistic dr at the time who kept loading me up with pills until my husband and mother both told me to get so second opinion, so I did.

    The new dr asked me to not take any vitamins for a week and then she would order tests…after that and the biopsy it was confirmed .. Celiac.

    My son was tested 6 mo later because he was getting headaches. Headaches? I read up on different symptoms and the gut, headaches and rashes are all symptoms. My son was 11at the time and I’m wondering if it was due to puberty. I have also read that some people are more apt to be sensitive to others because it’s in the family genes….

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