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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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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