Is Coeliac Triggered By Something?

[KCG91]

Hi all,

Firstly apologies for what is probably a stupid question, but I wanted to ask it as my parents don't seem to understand how something can be permanent if I've 'only just got it'. I know coeliac is a genetic thing, but is there a reason why some people might have genes for it and not have symptoms/coeliac disease? Can we have the genes for coeliac but only have it develop (and by this I mean, begin producing antibodies) at a later date in our life? If so is there anything that triggers this?
Thanks!

[SkyBlue4]

These are not stupid questions. A good many of us are wondering the same things.

 

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[wystearya]

The first link (stresses) seems to be what triggered mine.   I had migraines sometimes, but no other major/noticed symptoms.  Then after a very stressful time at my job I was very sick.   Digestive problems, etc.  So I fully believe that stress can trigger it, or at least aggravate it.

 

I was 32 before I found out I had this!   So, you are not alone!

[KCG91]

Thanks guys!
I've had minor GI symptoms since I was 19, which began halfway through a very stressful first year of university. About a year later my already sensitive teeth became more so and this year I tested positive for anaemia (which I've tested negative for a few times during my teens) and coeliac (128u/ml). So I guess it began at 19, if it's possible for malabsorption symptoms to happen that fast? (I'm 22 now).

 

Personally I'm grateful for this early diagnosis and eventually I'd like my family to get tested because obviously I love them and want to be sure they're healthy, but like I say they don't 100% get it yet. I still live at home during the holidays though so first of all I need to get them to take it seriously and co-operate with a new diet and CC issues (and it will really help now I can explain where it *might* have all come from) Hopefully if they see that the changes are manageable and the results are worth it they'll be more open to getting tested.

[1desperateladysaved]

I have 2 copies of DQ2 and 2 copies of DQ8.  No others that know they have celiac in the family.  I really noticed symptoms after having mono when I was 19.  Thirty years later I was diagnosed.  I am so glad for you that you found out young.  It is reversible (I have proved that) and I wish you well for your future. 

[Rucko]

I've heard celiac described as 'loosely genetic', perhaps because relatively few people with the genes actually end up becoming celiac.  It seems to be the big crap shoot of life, some of us end up with celiac, others with some other autoimmune condition. In my family, everyone has some autoimmune disease or another but my daughter and I are the only celiacs.  The others who have been tested and are not celiac are most likely gluten intolerant, but I can't convince any of them to even do a trial period of going gluten free!  The only one to give it a try was my husband, who had no symptoms of any kind, and yet feels much better eating gluten free.

 

Anyway, to get back to your question about developing celiac later in life, yes that happens.  In "The Gluten Effect" by Dr. Vikki Petersen, there are statistics that show that the incident of celiac seems to increase with each decade of life.  I may not be getting the numbers exactly correct, but it was something like 1 percent of people have celiac in the first years of life and up to 4 percent in senior citizens.  Your family should definitely be tested, that's the recommended protocol anyway.

 

Your parents should also try learn a bit about celiac disease - can you recommend that they check out some of the info on the web, or throw a book their way?  There are quite a few books these days they could probably check out of their local library or find at a bookstore for not too much.  I'm sure they would want to help you by finding out about all this.

[KCG91]

Thank you for the advice guys I think my parents understand better where it might have come from now which is a great help (I now have dedicated bright pink utensils and chopping boards in their house, win!). Also, for anyone else in my situation, I found that chucking in the 'to be classified as gluten free, a food must be fewer than 20 ppm gluten' was a good way to get across exactly how gluten free 'gluten free' needs to be.

I really hope that they do eventually get tested, once we've all adjusted to me being gluten-free I'll start to nudge them into it...  

[mbrookes]

I have read that a physical or emotional trauma can trigger Celiac. In 2000 I was diagnosed with breast cancer. After surgery and radiation (Thankfully, did not need chemo)I recovered and started having stomach issues. That progressed with a vengeance. Finally, in 2007 I was diagnosed with Celiac by biopsy. Looking back, I can see some early problems like gum disease in my 40's, but nothing severe until after the physical and emotional trauma of breast cancer.

[luvs2eat]

A long while back there was a thread on here asking people their "triggers." I didn't know of one for me... I developed full blown celiac at 49 years old. If I remember correctly, there were an awful lot of people who mentioned mono as their trigger. Another was pregnancy. My middle daughter developed it first, with no triggers whatsoever. Youngest daughter developed it next... and spent the better part of 2 years eating exactly 5 foods while she tried to figure out all of her intolerances. She's better now and can eat a lot more. Anyhow, she had a HORRIBLE case of mono at about age 13... don't know if that means anything. Oldest daughter developed celiac right after her first chemo round for breast cancer.

[psawyer]

Many people have the genes, but never develop celiac disease. Something has to trigger the immune system response. There are numerous cases of identical twins (identical genes) where one has celiac disease and the other does not.

Commonly reported triggers are an infectious disease (especially mononucleosis), childbirth, marriage breakdown, job loss. Anything that causes stress to the body as a whole will affect the immune system.

In my case, there is evidence of celiac disease from adolescence, but it went into high gear in 1995 after I lost my job and was unemployed for the first time in over twenty years.

[JNBunnie1]

I personally developed all my symptoms directly after a particular emotional trigger, an event

that caused extreme emotional stress, when I was 19. Literally less than 72 hours later my

symptoms started. It's like any other autoimmune disease, it can be 'triggered' at any time,

whether that's before birth or on your 80th birthday.

[w8in4dave]

I keep thinking back " what triggered this?" I am not sure! I have been having issues for so long I cannot really remember when it started! The more I think about it the more I just don't know! I can say when I started to get gut  pain!! It has been at least 7 years ago. It is just weird! I am the only one I know im my family with the symptoms. Now I do believe My daughter has it and her son. But out of my mom and dad I think my mom had it She is passed away now but looking back yup think she had it. My siblings? Nope just me! 

[Celtic Queen]

I suspect mine was triggered by pregnancy.  I got pregnant at age 37 and diagnosed at age 42.  A non-celiac gluten intolerant friend of mine theorizes that loosing weight can trigger it too.  She tried to loose weight and her NCGI appeared.  Same thing happened to another friend.  That possibly could be my trigger too, as I tried to lose weight after my pregnancy.

[notme]

for me it was pregnancy/childbirth - very noticable changes in my digestion - my ob/gyn 'diagnosed' me with colitis (or ibs, as i was told for 25 years - what?  that is a symptom.........)  i remember the ob/gyn telling me that it was 'normal' and 'very common after pregnancy' - ummmm.  no.  it's not.  but it is maybe for women who are genetically pre-disposed to developing celiac. 

 

i was young and stupid to listen to an ob/gyn about digestive issues in the first place.  but hindsight is 20/20, i guess.

[KCG91]

As much as coeliac triggers are a pretty miserable business it's great to hear everyone's experiences. I will be taking them all as ammo to a big weekend long family gathering at the end of the month! It's mostly based around food ... maybe I should invent a competition that involves checking labels for gluten. 

[CMCM]

My mom, as it turns out, has two celiac genes.  She probably had mild evidence of it from childhood (she remembers health issues, but nothing horrible).  At 46 (this was 1968!!) she had to have a hysterectomy...and that triggered her full blown celiac.  Over nearly 2 years no doctor could figure her problems out....they mostly told her it was "in her head."  She nearly died....when she was finally diganosed by a doctor who actually knew a bit about celiac disease, she weighed 89 pounds and the villi in her intestine were gone.  There were no gluten free foods in the 1960's, so she had to eat pretty simply.  Her condition healed within a year, her villi regenerated within about 8 months, and she regained her lost weight.  She has been scrupulously gluten-free ever since, although any cross contamination makes her violently sick.  Mostly she can't eat out because she is so reactive.  AND....she is about to turn 92 and is in otherwise great health!

[WinterSong]

I think mine was triggered when I got mono in college. I remember getting stomach aches almost every night after that and it was difficult for me to put on weight. 

[jststric]

Sadly, I think stress does all kinds of things to us that we don't realize. Even when we think we've got a handle on the stress. When my father was sick and dying I was VERY aware of the stress of the situation and did everything I could to deal with it and thought I was doing well. But there were DEFINITE things going on with my body that forced me to come home when all was said and done and have to have a d&c and go on medication because of the stress. I think it could be key to all kinds of things...heart, cancer, etc. But until we understand more, we are captives of our stresses. That said....I think my own gluten-intolerance (I figured it out on my own so was never officially diagnosed) came about because of a move. Now, we had moved numerous times prior...most, cross-country. All stressful, as moving usually is. But it was not an unknown and I thought I was dealing with it just fine, although I wasn't really happy about it. I had finally returned to live in a beloved location a second time and I didn't really want to leave again. But I was dealing. It was shortly after the move that I started having all kinds of problems and my own research was necessary because doctors weren't finding anything. Unfortunately, all the material out there says once that "trigger" is pulled, it can't be "UNpulled".

[Pegleg84]

I also think it can develop gradually in some people. I can't pinpoint when mine started, because looking back I had many non-digestive symptoms for years. The first sign was in my late teens when I had iron anemia for a bit, then my horrible mood-swings/anxiety through university, then the balance issues for a couple years. Other little things like brittle nails, lack of energy, bloating, etc. The full blown "holy s$#&e I feel like crud after I eat anything" didn't kick until my mid-20s, while I was working at a pizza restaurant, so I jokingly blame that as a trigger, but honestly I think it was just hitting the point of enough damage to really feel it.

 

I don't know my exact genetic markers, but Celiac runs on both sides of my family.

 

And I'm also very glad to have figured things out early in life, hopefully avoiding all the problems my mom, aunts/uncles have developed over the years.

[KCG91]

Sadly, I think stress does all kinds of things to us that we don't realize. Even when we think we've got a handle on the stress. When my father was sick and dying I was VERY aware of the stress of the situation and did everything I could to deal with it and thought I was doing well. But there were DEFINITE things going on with my body that forced me to come home when all was said and done and have to have a d&c and go on medication because of the stress. I think it could be key to all kinds of things...heart, cancer, etc. But until we understand more, we are captives of our stresses. That said....I think my own gluten-intolerance (I figured it out on my own so was never officially diagnosed) came about because of a move. Now, we had moved numerous times prior...most, cross-country. All stressful, as moving usually is. But it was not an unknown and I thought I was dealing with it just fine, although I wasn't really happy about it. I had finally returned to live in a beloved location a second time and I didn't really want to leave again. But I was dealing. It was shortly after the move that I started having all kinds of problems and my own research was necessary because doctors weren't finding anything. Unfortunately, all the material out there says once that "trigger" is pulled, it can't be "UNpulled".

 

I totally agree! I think in my case, I went from being very content with life, to a horrible new situation which didn't resolve itself for seven months and during this time my emotional stress totally distracted me from any physical problems which developed during that time. 

The family weekend went off well - one evening of cramps after a communal meal where I suspect I got a tiny bit of gluten from somebody else's food - but on the whole everyone's taken it on board. Especially my little cousin, who was trying to be militant about me having zero gluten and about CC but hasn't quite got the hang of what it is and isn't in! Bless. 

Thanks to the info from you guys on this forum I was able to explain it well (I think) so I'm really grateful because I've had practically nothing from my doctor so far. My Mum is also aware that they should all be tested, so that'd good.