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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Did You Have A Trigger That Started Your Symptoms?
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111 posts in this topic

I know many on this forum have had symptoms all their life , while others started later in life, and I'd like to hear about it.

My story is that I was eating anything I wanted with no symptoms at all (that I know of) until age thirty, when I traveled to Peru on a climbing trip. I got just a little sick from the local bacteria and took a single dose of Ciprofloxacin (common antibiotic for gut bugs).

Over the following five years I gradually dropped weight (155lbs to 145lbs) without thinking too much of it, because I never felt sick until the last couple of years.

Then I took a two month trip around SE Asia and got really hammered by sickness, winding up in a hospital there for rehydration and antibiotics, and then taking yet another round of Cipro on my own before returning to the US.

Once back, I failed to get better and was dropping weight fast (down to 120lbs) and was wondering if I was going to die. I self diagnosed because the dermatitis herpetiformis disappeared in Asia but came back within a week of returning to the US.

I immediately went gluten-free and simultaneously started taking Digestive Advantage.

I then gained 55lbs in a month, because my appetite was in survival mode and I was eating everything in sight and now it was actually sticking instead of running through me.

It's been a year this month now and I've gotten my official diagnosis from the doc. Things are much better, not perfect, and I'm living life as much as I can. I wonder if I would have ever had celiac symptoms if I'd just stayed in the US and never gotten sick overseas. I'm worried about doing any more 3rd world travel because it might make my celiac worse or just ravage my insides more, making me unable to eat other foods too.

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I know many on this forum have had symptoms all their life , while others started later in life, and I'd like to hear about it.

I've had symptoms for years but they were relatively mild and I attributed them more to lactose intolerance and just having a "sensitive stomach" than to celiac. I didn't even know about celiac until late last year.

I got bitten by one of my pet cats last year and got a horrible infection. I was on antibiotics for a month and nearly had to have surgery. I think this threw my body into crisis and the celiac symptoms really began in earnest.

A friend of mine who is gluten-intolerant actually put the puzzle pieces together and told me to read up on celiac and be tested. I was antibody positive and had both genes for celiac. My naturopath advised me to go gluten-free unless I really wanted to have the biopsy. She was convinced. Within a week of going gluten-free, I was feeling a TON better.

Things are good now and I do feel a lot better. I'm not one of those who lost weight while eating gluten, I weigh a lot more than I should and I'm starting to have the energy now to work on more exercise with my already better diet.

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.....I was on antibiotics for a month and nearly had to have surgery. I think this threw my body into crisis and the celiac symptoms really began in earnest.

A friend of mine who is gluten-intolerant actually put the puzzle pieces together and told me to read up on celiac and be tested.... She was convinced. Within a week of going gluten-free, I was feeling a TON better.

My name is David I

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I have often wondered if I had a trigger as well. I went through the first 20-odd years of my life being ultimately ok and just avoiding cow's milk plain because it would make me nauseous and break out in hives. I did start getting sick on and off every now and then but I would always get better. Then I started training for a marathon and just about my peak training I got sick and never recovered. Then I was diagnosed. Clearly it's not the same as what you went through, but somehow it makes me feel a little better that there is someone out there that has wondered the same thing. Had I not trained for the marathon where would I be now? but on the other hand, the endurance races are a real passion for me. Attempting the marathon at some point was pretty much inevitable...

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I work at grocery store located near a beach..our third shift cashier quit Memorial day weekend(I was on vacation), and came back to chaos.Worked 50 hours a week that summer, and think the stress from that kicked in my celiac symptoms...

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Yes. The trigger that started it all was being impaled at the age of 4. No one was home and I had to rescue myself and scared the dickens out of a neighbor when I went to her home covered in blood. I developed DH (Mom was told I had 'poison ivy in my bloodstream) and ataxia soon after. I also developed severe depression at that time which was a problem off and on until I was finally diagnosed at about age 46. I became worse and developed off and on stomach problems after my twin died right before our 16th birthday. The tummy issues and depression were always attributed to stress because my Dad was an abusive alcoholic. After 10 years of trying I finally had my son and things got a bit worse but the s--- really hit the fan after my DD was born. Instead of my occasional tummy issues they became daily and progressivly worse. I developed more severe ataxia and eventually had very painful D on a daily and nightly basis and developed the rest of the problems you see in my sig.

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I also had a trigger, mine was emotional/stress. As to the OP's concern about 'triggering' another kind of food intolerance, don't worry! Celiac is not a food intolerance, it is an autoimmune disorder. Autoimmune disorders have to be activated in some way to 'start up'. You may find, now that your gut isn't paralyzed, that you are sensitive to some other foods. But another illness isn't going to make you suddenly intolerant of green beans.

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Definitely a trigger ! I was so sick - some sort of bad virus. I couldn't eat/keep anything in for a week, lost five pounds I couldn't afford to lose, and ended up in the hospital emergency room getting 2 bags of IV fluids & a shot in my butt to stop my guts from constantly contracting. I wanted to die ! Took me a year to figure out why I got sicker when I ate and probably another year to accept it and convert my kitchen (part of it) and adhere to the diet completely.

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I firmly believe I had more than one trigger--the first actually setting the disease in motion and the subsequent ones making my symptoms progressively worse.

I was diagnosed at age 49--in my late 20's I had my second child via c-section. Before this, I had had stomach problems and fainting as a child, but felt great during my teen years up until then. At that point, I began to experience nausea and persistent anemia.

I lived with those, but developed panic attacks and almost crippling anxiety. I became an expert at making excuses and pretty much stayed home, saving what energy and courage I could gather for my kids.

In early 2003, I had a bad case of the flu and was never the same. My digestive issues got much worse--I had chronic diarrhea, weight loss, tingling and numbness, feelings of burning in my mouth and soles of my feet, depression, still anemic, and fatigue. I was sure I was dying, but the doctor couldn't come up with anything except to take extra iron.

.

I read an article about Celiac Disease, and asked to be referred to a gastroenterologist. After telling him my whole story, I asked him if I might possible have a problem with wheat. The rest is history :)

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Hi there

I personally am trying to figure all that out right now...

Think it might go back to teenage years for me (I am 27 now), where I became bloated every morning after breakfast/ having sleep & skin issues, migraines...

didn't know a thing about gluten intolerance/ celiac at tat time, always put it on something else.

but nothing else for years, until 2-3 years ago when tummy symptoms would occur from time to time.

it all worsened greatly when I arrived here in the US; 1,5 year ago. took me all that time to understand (diagnosed about a month ago)

interestingly enough, I recently read about how smoking could possibly delay/ prevent the symptoms from appearing and/ or celiac disease to develop (I am a smoker, and reduced my smoking significantly when I got here and began developing more obvious GI symptoms)

anyone else has info on that??

I am now about 5/6 weeks in to the gluten-free diet; getting better everyday -and still learning, adjusting, trying to make all that work...

great to read your stories, btw!

Sophie

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I ate whatever I wanted until 3 years ago - but I always had Very Strange eating habits (because of eating disorders). I took a trip to Vegas and ate a lot of foods that I wouldn't normally eat. I also decided to get my first tattoo. I got sick the day I got home from my trip, and have never been the same since. I had extreme back pain, and pain through-out my whole body constantly. I was bloated all the time, and got extremely thin (95 pounds). It took my Doctors a year to figure out what I had. That was the worst year of my life. I felt Crazy, and I was suicidal. I felt like nobody understood what I was going through. My poor kids did not have much of a Mom during that year. I always wonder if the trip or the tattoo triggered my Celiac Disease. I still have a ton of health issues, but am much better now that I am gluten free. Celiac has certainly changed my life though!!!

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My trigger was a stomach bug in November 2008. Our whole family got sick, my sister ended up in the hospital from the bug, she had bloody stools and was so dehydrated she had to be put on an IV. The next day I came down with it, then my husband. I never really got better after that day. I was very healthy up to that point, so it must have been the trigger. Everything changed from that day :(

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I think my final nail in the coffin was 3 solid weeks of antibiotics last summer

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well, i think i have had DH symptoms for about 7 years but other than that no celiac symptoms that i can pinpoint until having my third baby 6 months ago, that must have been my trigger and i went on a fast and furious decline (from 135-110 in 2 months) and i was so weak and sick i also wondered if i was going to die. seeing me become this shell of a person they didn't even know made my family search for answers and it was my mom who first suggested celiac disease. i am ever so thankful she did and i didn't have to continue getting sicker because i had been to the doctor and they didn't seem to have a clue what was wrong with me.

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Reading all these posts is really amazing to me. I am so glad that someone brought this up. I am SO relieved I am not the only one out there who feels that their life has turned at a very specific point - something that put us "over the edge." I can't explain why - but somehow its therapeutic knowing I am not the odd celiac! Thanks all. B)

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My symptoms first started after knee surgery. At first I thought the nausea was from the narcotics I took for a week after, but then it wasn't going away, and more symptoms started. I kind of ignored them for awhile, but when I started getting really bad stomach pain after eating and the diarrhea and constipation got worse, I knew I couldn't just keep living with it. It's funny that this surgery is what started it, because I've had 2 previous surgeries before this one, so I don't know what was different this time.

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I had symptoms as a child but after early teens they went away. My first potential trigger was quitting smoking, and at the same time was exposed to Mexican food on a regular basis for the first time, with adverse effects. Lots of bloating :P

Then there were two other triggers 20 years later - a head-on auto accident followed closely by a serious mycoplasma infection. Three years later realized I was lactose intolerant, but that was not all; did not know what the problem was. Add on 11 years and I developed RA and in another year psoriasis. Quit eating gluten in hopes it would help my RA, and realized I was celiac or at the very least gluten intolerant. No testing.

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I believe, although I'm not 100% positive because my symptoms were never terribly noticable, that mine was triggered by a severe case of mono when I was 21. I was sick for the next 2 years with varying diagnoses including lupus, chronic fatigue syndrome, fibromyalgia, and finally depression, none of which were correct. Eventually I got mostly better was never 100% again until I got my celiac diagnosis out of nowhere in December.

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I know I was dealing with various issues my whole life but didn't know what I was actually dealing with. Lots of amalgam fillings and growing pains from early on and lots of gastro issues in middle school. I kept as active as possible and would go into flares of what, I didn't know but learned to keep to myself as I was seen as a complainer if I said anything, especially since no one could figure anything out. Ten years ago, after my ENT had taken me off all antibiotics for years as he said they were messing up my immune system, I went on an antibiotic for the first time in almost 8 years. Within 48 hours I was a mess. Initial diagnosis because of extreme joint pain and kidney problems associated with the onset after antibiotics was for Rheumatoid Arthritis. That seemed to explain the intermittent flares I had encountered every 3-9 months in the past. After the antibiotic episode I never really went out of flare mode for my RA and my RA factor numbers just kept on climbing as the complications mounted. High lupus indicators, Sjogren's, RA and Reynaud's all after that episode. I had to take some antibiotics a few years ago for dental work as I was having multiple root canals by this point. I noticed that I would have normal bowel activity for a few days.. didn't realize how bad it had gotten and what I was used to until the antibiotics seemed to clear things up for a short time. Kept getting worse though and when I could barely move or stand the pain anymore that's when we finally moved in the direction of getting the DX for Celiac. It's been a year this past February and although there has been great improvement I notice that in some ways I almost seem to be regressing. Even though I have been strict in compliance to the gluten-free diet I am starting to have old problems again and gut pain. I still can't handle excessive stress without needing a lot of recovery time although I have been able to sing and teach much more easily that in the past several years. Antibiotics sure seem to be a bit of a theme. I know when I was checking out things at the Lupus foundation I was struck by the statement to the effect that while antibiotics seemed to be linked to flares of SLE they are unwilling to state that they are causitive. ...hmm.... Things that make you go hmm....

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i recognize now that i had "symptoms" my whole life but when i was 24 it triggered into a full blown daily problem. i kept having the most painful stomach aches and D for hours and hours to where i couldn't move and i went to the doctor about it to find that i was pregnant. symptoms stayed and more symptoms became an issue. we wanted another child only to find that it took almost 5 years to happen ... which now that i look back on it and don't think it was a coinsidence - i started only eating veggies and meat and fruit for a month just trying to think of anything "i" could do to make my pain and issues better ... i didn't just start feeling my health improve i also became pregnant.

still didn't connect the food allergy thing to my health though because i had never heard of celiac or maybe if i did i brushed it off thinking i wasn't allergic to anything. but wow, looking back over the years putting everything together i could have and should have been diagnosed almost 14 years ago!

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I too think I had multiple triggers that made my symptoms progressively worse.

I had the standard things....surgery, severe stress, traumatic illness.

Each time I had a worsening of my symptoms that never backed off. Eventually after the last trigger I was unable to keep anything down and was in crippling pain for several weeks straight. When I stopped eating entirely for a few days and then re-introduced foods one at a time it was clear what was wrong with me.

I look forward to my next life trauma (not really) because I know it won't lead to more debilitating GI issues....YAY!

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I look forward to my next life trauma (not really) because I know it won't lead to more debilitating GI issues....YAY!

Hi henny--I had a hysterectomy after being gluten-free for a couple of years and actually had the same thought! :D Happy to report no worsening of or additional symptoms. ;)

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Ha! Too funny! It's amazing how chronic pain can warp your mind and sense of humor!

Hi henny--I had a hysterectomy after being gluten-free for a couple of years and actually had the same thought! :D Happy to report no worsening of or additional symptoms. ;)

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Actually ,the illness is not all a negative for me.I became very aware for the first time of what I was doing to my body.The necessary changes to my diet( having to cut way back on junk foods due to multiple food issues,if I do not eat at least 3-4 servings of veggies/fruits a day,I start sliding downhill again)and having to learn to manage stress have improved my life greatly.Not the way I would have wanted it to happen,but we don't always get the message delivered politely,do we?

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I always had a nervous stomach but I REALLY had problems after I had my son. For a YEAR my doctor insisted it was the combo of having a deployed husband and new baby and stress. I wasn't depressed, wasn't stressed out any more than normal, there was no explanation why I couldn't eat. Then I went in armed with information and family history and told him that my grandmother's problems didn't start until after she had my Uncle, who was the first of 5. At her suggestion I cut out Gluten like she had. THEN he looked at me and said "Ok we'll do some tests"

And now we know that my grandmother and I share food allergies. I hope the next pregnancy is easier since I know what I am allergic to.

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      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
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    • Could this possibly be related to celiac or a gluten intolerance?
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