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Did You Have A Trigger That Started Your Symptoms?


afreeclimber74

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maile Newbie

this is a great thread! ( :P although only a celiac would say that!)

I've had symptoms all my life, I can recall various moments when ingesting gluten caused problems (bloating, C alternating with D, canker sores) but due to a mother with MS I'd been gluten light most of my life. My big trigger was 2008, I'd lost 30lbs going on an elimination diet and was doing well until the summer. That summer was the 3rd year in a row of working full time and studying 25 + hours per week this on top of a family life, I failed the second level of an exam and came back from a vacation to find our associate was sucking up to and flirting with our boss so she could get my job. the celiac symptoms started in earnest in April and by October 6 I was in the hospital with unspecified pain (Thanks to a Tim Hortons donut!)

Self diagnosed by mid November and went gluten free (rather clumsily), saw the doctor in late November and he did the blood test but of course it was negative as I'd had no intentional gluten in over 2 weeks at that point. Been mostly gluten free for the past 2 years but not getting better, thryoid tanked, anemic, hair loss, adrenals struggling. This November went back on a strict elimination diet and things have gotten better health wise but I am now super sensitive to gluten (how about 1 drop of water from a pot cooking gluten pasta into my food, set me back 2 weeks)...back to the doctor and now on a wait list to see a specialist to get the endoscopy. I originally did not want to do the endoscopy but these past 6 months my anemia has gotten worse, I take iron with a gluten free vitamin C pill for 6 weeks and my iron dropped but inflammation and ferritin were up, way up.

anyway, have hopes for this specialist, he's the one that explained to my GP that if I was even gluten light the serum test was useless so there is hope!


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nerdolicious Rookie

Pregnancy was my trigger. In the fall of 2006 I learned I was pregnant, then rapidly started loosing weight. I lost close to 40 lbs in 3 months. Oddly, I was eating enough and not vomiting. Everything just seemed to go right through me. I lost the pregnancy (probably due to being malnourished) and never gained any of the weight back. From then on I noticed my stomach was never the same. I felt sick every time I ate and developed severe anxiety, but I just thought it was stress. In May and June of last year it got really bad and I would have to run to the bathroom every time I ate. I was eating 4,000 calories a day and still losing weight. I eventually went to the doctor after losing another 10 pounds and becoming severely underweight. He told me he suspected Celiac and sent me down to the lab. After getting my blood work done I had my last gluten meal (McDonald's bacon egg and cheese bicuit, mmm!) and went gluten free that day. That was June 30th, 2010. When I went back to the doctor to get my results I already knew what he would say because I had already responded wonderfully to my gluten free diet. I am happy to say that nearly 10 months in, I am feeling stronger every day and my anxiety has disappeared.

  • 4 months later...
Februaryrich Rookie

My intolerance seems to be triggered by a mononucleosis (without sore throat) and a food poisoning. It took a year before I knew what was actually going on.

shadowicewolf Proficient

I had "ibs" since i was about 12. It got to the point where i would have to take pepto to go out and about (and sometimes this wouldn't work).

If that wasn't bad enough i used to have "going" issues, i'd have to go about every half hour to an hour. It was even worse when my so called "ibs" was kicked in with it.

I used to have headaches and nosebleeds from heck (daily, big wads of papertowl ones). I had this little problem "fixed" by a ENT doc... still happened afterward.

8 years later, went off gluten... and my heckish "ibs" stopped (i've had maybe 4 instances in the past 5 months! Much better than daily!). I don't have to go to the bathroom as often (its sooo nice :)). Headaches are nearly gone and i haven't had a nosebleed in months! :)

BizzyBee62 Newbie

Hi,

I have not been formally diagnosed with Celiac's but I have been on a gluten-free diet for the past 11 days and my whole life is different...in the most wonderful ways! I will never go back to eating gluten containing foods again.

The question you asked really got me to thinking about this, I have had symptoms my whole life, have always battled diarrhea, stomach issues, etc. but about 8 years ago I had an anaphylactic reaction to a medication I was taking and ended up in the ER, it took about three days for the acute symptoms to abate but for some reason I developed severe diarrhea after this episode...no doctor that I went to could tell me why, I even had a colonoscopy done to see if there were any abnormalities, aside from a few polyps, everything was normal. I have suffered for the past eight years with...at times...dibilitating symptoms, I lived on Immodium and limited my life to places that had good bathrooms...miserable way to live!! I don't know why this allergic reaction flipped the switch in my body, but it sure did! It's funny because I was diagnosed with Sjogren's Syndrome a couple of years ago and I flared with the symptoms after I had the H1N1 flu...maybe it is the immune response, I don't know but I really hope someday they are able to find the reason this happens, it will be interesting to finally know.

Have a wonderful day...

Jodi

lucia Enthusiast

I don't know if the original poster is still around, but this is interesting because I got really sick with what turned out to be gluten intolerance/celiac? after a trip to India. I came down suddenly with stomach cramps and nausea, painful neuropathy and excruciating PMS.

Interestingly, I had likewise come down with stomach cramps after a trip to India three years before. I even went to the ER (they found nothing). The cramps receded on their own after about a week and a half.

I had one trip to India in between these two trips in which I returned and had no GI distress.

However, backtracking I realized that I had had symptoms (at least neuropathy) as far back as five years before. The trips may have triggered more intense symptoms, but not the disease/condition itself.

India is a really harsh environment for someone with digestive issues, so I wonder if that's why the worst of my symptoms were triggered there? But Indian food also doesn't have much gluten, so I wonder too if it's possible my body was relieved by a gluten-light diet then subsequently triggered when I reintroduced a gluten-heavy diet? This second theory is supported by the first incidence since the trip was six weeks, which is a significant time to be eating a gluten-light diet.

I too worry about third world travel in the future. I have many in-laws in India. I'm not anywhere near being able to take a trip like that yet though.

Twinklestars Contributor

I had symptoms my whole life, but thought it was just normal. The big trigger that something was wrong was after my divorce to my first husband. The stress associated with that and working out child custody etc made me break out in what I believe was DH and a whole host of other stuff that has continued in varying degrees of severity for the last 6 years.


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pain*in*my*gut Apprentice

I had symptoms my whole life, but thought it was just normal. The big trigger that something was wrong was after my divorce to my first husband. The stress associated with that and working out child custody etc made me break out in what I believe was DH and a whole host of other stuff that has continued in varying degrees of severity for the last 6 years.

This is an interesting thread! I have had IBS my entire life, but my trigger was a bowel resection in 2007 for rectal endometriosis. This was immediately followed by a full blown yeast infection from my mouth to my other end (sorry, tmi)! I developed obstructions from scar tissue and had 3 surgeries after that to fix it, and it was downhill from there. :(

Twinklestars Contributor

This is an interesting thread! I have had IBS my entire life, but my trigger was a bowel resection in 2007 for rectal endometriosis. This was immediately followed by a full blown yeast infection from my mouth to my other end (sorry, tmi)! I developed obstructions from scar tissue and had 3 surgeries after that to fix it, and it was downhill from there. :(

It definitely sounds like something that causes stress to the body can make celiac symptoms surface. Whether it's emotional stress, stress caused by medications, stress caused by surgery, or an illness. Maybe at that point, especially if your body has been giving you 'signs' something is wrong your whole life, it just gets angry at you :lol: and says "Hello! Something is wrong!!! Fix me!".

Harpgirl Explorer

For me the trigger happened after my second pregnancy, but like others, I can look back at my "symptoms" and realize them for what they were, such as random come-and-go lactose intolerance. Within a year after my second c-section, I also had knee surgery, so I guess that did me in. ;)

Katrala Contributor

What my doc assumes triggered mine:

Start of new school year (I teach Middle School) with a big change in schedule

while...

Coaching tennis after school each day (12 hour+ days)

while...

Having 2 children (and a husband, so, 3 kids?) of my own, one with special needs

while...

Taking 9 graduate hours in order to finish my Master's

Yes, I did this all at once. Yes, it was probably one of the stupidest things I've ever done.

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    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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