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afreeclimber74

Did You Have A Trigger That Started Your Symptoms?

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I had symptoms my whole life, but until I started looking back since diagnosis, I did not put them all together.

In High school, I had a virus the doctor actually called Virus X because he didn't know what it was. I missed nearly a month of school due to vomiting, a bad rash and fatigue.

My hair was always thin, I know that. Maybe that was a clue. My thyroid panels and blood sugars always fluctuated.

In my 20's I had my gall bladder removed after a year of feeling lousy no matter what I ate; then, in my 30's I had viral pneumonia, a bad car accident, followed by multiple miscarriages, a very stressful divorce, followed by a fabulous happy marriage. (the bright spot in this story) :)

Then, I gained a TON of weight (60 lbs in a short time)--which I could not lose no matter how hard I tried, developed "IBS",(the doctor wasn't sure if it was "giarrdia" so he kept dosing me with anti-biotics. My hubby and I now recall him using the phrase "leaky gut"--why he didn't tell me what to do about it is a mystery :angry: ). I dutifully took those drugs (I was too naive back then to question doctors) but still had to leave my teaching position, because I was tired and missing too many days, was DXed w/osteoarthritis, had early awful peri-menopause, migraines, insomnia, had a few surgeries (shoulders, hysterectomy) ..started to have chronic pain ("fibromyalgia", so they say) and

then, finally...in 2008, as my father was dying and my family was in chaos, I had a "stomach bug" for a week which was treated with cipro and (because no doctor ever suggests probiotics after those...) I started to develop the REALLY BAD SYMPTOMS. That stressful time was my final insulting trigger.

I have burning neuropathy, lost the 90 lbs. I always wanted to because of the diarrhea and inability to eat. I am a skeleton, I lost my hair, and have no muscle tone whatsoever. I had spacey head and had difficulty articulating and concentrating. I live in 24/7 agony from muscle/joint/bone pain and cannot take a thing for it because of the stomach pain. I barely sleep and I feel like I am revved up like an anxious mess.

Stress, a lifetime of trouble "brewing" and a whole host of bizarre crippling symptoms developed and in 3 years of searching for an answer to this burning pain-- inside and out-- and over 30 different doctors, all I heard was..."I don't know" or "it's just GERD". relax and take these pills ( I burn from my mouth to my ..well, you know)...I figured I would die before anyone helped me figure it out. There were days when I thought it would be easier if I just did.

I was told to get a "scooter" to get around, take antidepressants, xanax, sleep meds and pain meds and accept my fate.( Rude and dismissive doctors every where.)

NO, I won't! I KNEW something was keeping me ill.

I love my husband and I love my life. I had to save it.

I refused to give in. I kept researching, though I could barely comprehend sometimes. I went to every doctor and alternative practitioner I could think of. Homeopathy, supplements, medications, acupuncture, PT, biofeedback, even psychotherapy... I tried anything to get out of pain. Spent an entire life savings. No change whatsoever. My gut kept bothering me, I dwindled down to nothing and I spent a lot of time in the bathroom. I was thinking I would go insane....

Until I diagnosed myself in November, and I went back to my primary care doctor with my thoughts (his own children are celiacs) and he said with horror...OMG! You're right!!

Since going totally gluten-free (after a few "accidental glutenings" by well-meaning cooks :huh: ) -- I am starting to believe I just may be okay. :)

I have months of rehab to get my muscles back, I am told but first, I have to get healthy and heal the gut.

I think I was a "simmering celiac" --I made that term up!! :P )all my life, but the final trigger of losing my Dad just put me right over the edge.

WHEW! That was a long story.... thanks for reading it...:D

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I am 100% sure I had a trigger! In 2005 my whole family was in an awful car accident, my husband and son were hurt the worst and had to be airlifted to a trauma center, my daughter and I had to go by ambulance to the nearest hospital. My daughter and I were released that same day and I had to get to my husband and son who were about an hour car drive away. Thankfully everyone is here with me now and healthy but at the time I was scared to death!! I was a smoker for twenty years and after my husband got home after a month in ICU I promised my kids I would quit smoking ( he was a smoker too but quit while he was on morphine LUCKY!!) But since then I had horrible stomach pain, bloating, gas Oh my god!!! I lost 30 pounds and my blood work was all over the place! finally I was diagnosed on June 2, 2010 and I feel wonderful!!! I am now hearing alot about a smoking connection did anyone else have that connection?

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Thanks for this tread,,, I had never give much thought to what could have triggered my symptoms, now after thinking about it I have a better understanding of what could have been the trigger.

I developed Bell's palsy at the age of 4, I was treated with massive antibiotics and then experimental antiviral drugs until I was 8 years old.As a result of the Bell's palsy I have a 95% hearing lose in one ear and some permanent paralysis/numbness in my face. I have had issues,symptoms, DH ect...for as long as I can remember . I am not "Officially "diagnosed but there is no doubt in my mind.There also is no doubt in my mind that this forum saved my life and my sanity . :wub:

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I am now hearing alot about a smoking connection did anyone else have that connection?

I have a lot of potential triggers, but that is one of them. (Before I quit I used to be able to eat just ANYTHING!!)

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I am 100% sure I had a trigger! In 2005 my whole family was in an awful car accident, my husband and son were hurt the worst and had to be airlifted to a trauma center, my daughter and I had to go by ambulance to the nearest hospital. My daughter and I were released that same day and I had to get to my husband and son who were about an hour car drive away. Thankfully everyone is here with me now and healthy but at the time I was scared to death!! I was a smoker for twenty years and after my husband got home after a month in ICU I promised my kids I would quit smoking ( he was a smoker too but quit while he was on morphine LUCKY!!) But since then I had horrible stomach pain, bloating, gas Oh my god!!! I lost 30 pounds and my blood work was all over the place! finally I was diagnosed on June 2, 2010 and I feel wonderful!!! I am now hearing alot about a smoking connection did anyone else have that connection?

I already told you guys my long story (see above) But I did not think about the smoking angle....after I had a traumatic car accident, I quit smoking, developed pneumonia (HUH!) and a few months later, I had a miscarriage and went downhill slowly....not sure if it's a connection, but it sure seems strange :unsure:

Isn't everything about this disease baffling anyway.??..my symptoms seem like something from a sci-fi movie sometimes.. :(

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I can't think of a trigger, really... I suffered from constant fatigue and headaches since I was in high school, going back and forth between depression and normality, but I never really had stomach issues... I ate pretty much anything; no allergies, no pickiness. I always thought I had some kind of sleep disorder, and was prescribed sleep aids when my bloodwork for thyroid, anemia, hypoglycemia, etc. consistently came back normal (although the iron would always be "a little on the low side"). Eventually doctors stopped taking my fatigue and headaches seriously and shuffled me back and forth between psychologists and the same damn blood tests until I gave up and started lifestyle changes--mostly sleeping 8-10 hours a night and taking lots of naps, cutting out certain things before bed, etc.--in order to get by without docs.

When my headaches intensified, I was prescribed low doses of Elavil and my sleep and headaches improved, but I was still always tired and had a "background radiation" headache going on.

I had a bit of an emotional breakdown my sophomore year of college, but associated it with lack of sleep due to insomnia and tossing and turning when I did sleep. I went to Alaska to be with my parents and get better, and improved a lot with regular sleep and a 40-hr-a-week work schedule that kept me busy and tired enough to sleep at night. It was really tough but I improved emotionally and spiritually enough to deal with the pain and fatigue again.

Then I moved here to a different college and after a year of being here I started my senior year. I felt better emotionally than I ever have, started walking the mile to school for exercise, being productive... but I ate a lot of junk food. idk. I started having crazy problems with acid reflux, bloating, and gas pains. All of a sudden I would eat and then feel nauseated, feel hungry constantly but bloat to fullness after a few bites... I lost 10 lbs in 2 weeks and was only eating about 700 calories a day because I got so full so fast. Stopped being hungry at all after a while. Got put on Nexium, and getting the dose upped and upped when it didn't work. Then I got put on Carafate as well, this nasty pink liquid to coat my throat and help protect it from the acid. I wasn't improving, so the GI doc did a scope. Found a small--negligible, he seemed to think--hiatal hernia, but also inflammation in the small intestine, so he did a biopsy just in case. Then he made me get bloodwork done, and, lo and behold, I was way positive for Celiac! Last thing I was expecting.

I'm still having ALL my symptoms after a week gluten-free, but there is hope... my stomach actually growled with true hunger yesterday and today, which it hasn't done since all this started...! And my energy level is improving, if incrementally.

Anyway... yeah. There wasn't any trigger that I know of, nor a true "turning point," since before my GI issues I still had energy, sleep, and headaches that might be linked to gluten (I won't know until I'm on the diet for several months, probably).

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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.

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.

My trigger was a week of Augmentin for a severe sinus infection. I was laid up with the big D for 6 weeks and then diagnosed with Celiac right before we moved to another state. Many people on this site do a lot of traveling and bring along a lot of their own food. Once you know what you can tolerate and get into a routine I'm sure you'll be able to leave the US. In the meantime we're always here for you!

Loey

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I can remember as far back from the age of 8 feeling like crap, hurting, suffereing from constipation more than the other. Going up to 6 weeks at a time without a bowel movement then all of a sudden the d would hit and last a couple of weeks. Fatigued wasn't the word for it. I remmeber being sent outside to play and finding a comfortable spot in the crook of a tree or crawling into the family car or a relatives car and going to sleep. I have hurt all my life, joint pain, bone pain, sick to my stomach, flu like symptoms. Social anxiety disorder, clinical depression, asthma, So on and on, I would miss a week of school almost like clockwork due to my period was so bad. My nose would bleed every single day. Sometimes up to 3 to 4 times a day. I've had 7 miscarriages and 1 child born 2 months premature, sicker than a dog from day one.

I remember the trigger for me.

I went into the bathroom at the age of 8 to find my mother had tried to commit suicide with a butcher knife in the bathtub. Blood everywhere, She had cut her throat and both wrists and that big bloody knife setting on the edge of the tub.

She managed to live but needless to say it put me into a state of shock. There is a lot of my childhood I can't remember.

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My trigger was a week of Augmentin for a severe sinus infection. I

Loey

Ugh, Augmentin - what terrible stuff!!. I also took it for a sinus infection after everything else failed, spent weeks in the bathroom, and then ended up with candida and c.diff infections in my gut which took months to cure. Nothing was ever the same after that, yet it was more than 10 years until I self-diagnosed :rolleyes:

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I can remember as far back from the age of 8 feeling like crap, hurting, suffereing from constipation more than the other. Going up to 6 weeks at a time without a bowel movement then all of a sudden the d would hit and last a couple of weeks. Fatigued wasn't the word for it. I remmeber being sent outside to play and finding a comfortable spot in the crook of a tree or crawling into the family car or a relatives car and going to sleep. I have hurt all my life, joint pain, bone pain, sick to my stomach, flu like symptoms. Social anxiety disorder, clinical depression, asthma, So on and on, I would miss a week of school almost like clockwork due to my period was so bad. My nose would bleed every single day. Sometimes up to 3 to 4 times a day. I've had 7 miscarriages and 1 child born 2 months premature, sicker than a dog from day one.

I remember the trigger for me.

I went into the bathroom at the age of 8 to find my mother had tried to commit suicide with a butcher knife in the bathtub. Blood everywhere, She had cut her throat and both wrists and that big bloody knife setting on the edge of the tub.

She managed to live but needless to say it put me into a state of shock. There is a lot of my childhood I can't remember.

Hugs to you. The first thought that went through my mind with this was to wonder if gluten and celiac had any thing to do with your mother's attempted suicide. I had a maternal aunt who, in hindsight, I feel was probably plagued by complications due to undiagnosed celiac. I wish I could get genetic testing done on the whole family but wonder just what impact this has had on so many different aspects of the lives of the families of all who have given their stories here.

You are a pretty incredible human being to have suffered through all you have and to be such a positive influence here.

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Hugs to you. The first thought that went through my mind with this was to wonder if gluten and celiac had any thing to do with your mother's attempted suicide. I had a maternal aunt who, in hindsight, I feel was probably plagued by complications due to undiagnosed celiac. I wish I could get genetic testing done on the whole family but wonder just what impact this has had on so many different aspects of the lives of the families of all who have given their stories here.

You are a pretty incredible human being to have suffered through all you have and to be such a positive influence here.

Thanks I really appreciate that, I really do. I try. :)

I have often wondered also because of all the cancers plus other disorders that run in both familys. My mother grew up bleeding every single day from the age of 10. She would only have 3 days out of the month when she didn't bleed, 3 of her brothers always had chronic nosebleeds and her 4 brothers, her sister, her father and 3 of his sisters all died from different cancers, but the most common among them was colon cancer. My mother and her mother lost their teeth young. So many symptoms of this disease and also on my father's side. My paternal grandmother told me one day when I was complaining of my stomach hurting that get used to it because it ran in the family.

I lost my dad to colon cancer, he had 2 brothers who had cancer and I have several cousins with cancer, I lost a 28 year old cousin to brain stem cancer..

My first memory I have at the age of 4 is going to my paternal grandmother's sister's funeral She died of lung cancer.

So, that is the main reason I stay gluten free. I have always thought that I would get cancer. Now I have hope that I won't. I have successfully won over a couple of cousins. They are gluten free now and are feeling loads better. My mom is 69 and says she's too old to deal with this. She'll eat what she likes, she's lived with the diareah all her life. She can handle it. Parents, what can ya do but love em. :lol:

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The primary trigger for me was getting sick from C. Difficile. But, looking back I can see that some mild symptoms started about a year and half before that after I ran my first marathon. I think the intensive training and the race itself put a lot of stress on my body. But the symptoms weren't that bad because I still ran another marathon a year later. Six months after that the C. Diff. hit.

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I had a trigger similiar too. I had been struggling with exhaustion and other symptoms for years (with no help from drs)then I got a parasite from crabs legs that I didn't cook enough so that was a strong medication and then I got a bad infection and was on antibiotics (3 rounds of them). After that my insides shut down totally and I got very sick. I was desperate and researched it online myself and went gluten free... Ureka! :lol:

I did most of this to myself... :(

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I believe that I too had a trigger, or combined triggers. Stress at work (Social Services), then I retired and in order to get the family healthy I went whole wheat on everything i could. Talk about an over dose of gluten! I've had symptoms on and off all of my life but it was right after the stress & wheat over dose that I became very sick.

I have always believed that I never really recovered from having mononucleosis

When i was 16. All through high school and college my fatigue was unbareable.

With my week old diagnosis (20+ years later), I am now looking at mono as a very

Likely trigger. My GI symptoms (with the exception of nervous tummy as a child,

Which I attributed to my shyness) appeared after a really bad bacterial or viral bout

Of D that lasted uncontrollably for almost three weeks (This was my freshman year Of

College). I started having obvious gurgling regularly and noticed some foods bothered

Me more than others...then i gave birth to my daughter at 23 and things worsened again.

Finally my son was born five years later and the heartburn appeared and D became worse again...followed by

Joint aching, hair loss and numbness in fingers and toes.

Who knows what the reality is, but it sure seems like there are a lot of folks here that had

Various stomach bugs that seemed to be the trigger.

I am just so glad to have an answer to why i have felt unwell for so much of my life!!!

I am looking forward to reaching the one month, six month, one year gluten-free milestones....

Come on energy!!

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Wow this is most interesting. I have suffered from bloating, depression stomach aches, dermititis for about 15 years. But then 3 1/2 years ago I developed an ear infection and went on a course of antibiotics. Symptoms appeared overnight. Severe anxiety, yeast overgrowth,racing heart, severe stomach pain, feelings of 'impending doom' so intense that I thought seriously of suicide every day. I can't even begin to describe this time .. it was truly torment. Antibiotics I believe was definitely a trigger for me into 'neurological symptoms'. I have been tested twice for celiac and came up negative. I also had a colonoscopy and endoscopy, however at the time I had been experimenting with 'gluten-free' diet so I'm not surprised it came back negative. My Dr says I need to put gluten back in for 2 weeks before test but I can't do it. Its terrifying! Although my symptoms are less severe I have still not been well the past year and just discovered I have still been having gluten in some products, maltodextrin for instance. I also discovered that Rice is a big no-no for me. Depression and anxiety appear within hours ... so I'm now on a mission to research and label read a little more clearly. It appears if I keep both rice and gluten from my diet .. life is better and for the first time in 4 years I feel like I have a future. I'm so grateful to have found this forum!

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Thanks for all the stories. I felt great, was fit and the healthiest I had ever been. 40 years old, 2 great kids, great husband, rewarding job and 2 dogs. So I was very happy.

I got a virus - I felt fine when I went to bed but woke up with incredible dizziness. I fell out of bed to the floor and vomited. I began panicking cos it was really scary. Am ambulance came and i was taken to emergency. the docs think it was an inner ear infection - it is called vestibular

neuritis. They did lots of tests and told me i was anemic

Strange because i felt really energetic! But I had really

heavy periods so I eventually went to the docs to have a scan for fibroids and other. Had a fibroid the size if an orange so I had a hysterectomy which I was thrilled about! I didn't much like the operation but I was happy about no more bleeding lasting 2 weeks and really bad pain!

After the hysterectomy I felt great - lots more energy than I had expected after a major op. But the lower abdominal pain hung around for 8 months by which time my dr was starting to agree with me that something might be wrong.

When I struggled to ride my bike home from work one day and collapsed on a park bench in tears from being upset at losing my energy my husband told me to insist on tests. Would you believe that later on when recounting that story to a specialist Coeliac dr she told me that crying "was an inappropriate response indicating some mental problem"! Oh I also had diarrhea but thought it was just an initial reaction to a vegan diet.

After loads of tests I was diagnosed with celiac disease. Then later with fructose malabsorption and a probably temporary lactose intolerance. A year later. The diarrhea went first. I still haven't got back to cycling or running. And I am still fatigued but not nearly as bad as I was. I am on cymbalta which is an anti depressant. I was on an AD before diagnosis and it really helped me with depression.

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I started out in a very happy, warm dark place. Then one day I came out and there was this big bright light. I think that darn light is what triggered my symptoms, but no way to prove it. Darn lights! :D

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I had a "nervous" stomach when I was young. I was diagnosed as hyperthyroid at 9 and medicated for that until I was 23 and had it removed. Now replacement synthroid. I had always eaten a lot and anything. When I was 35 we moved (dh in the navy we moved a lot,but this was difficult), bought a house, added an addition, had an extended visit from mil, and I ended up with really bad heartburn. The prevacid made my legs, nose and cheeks tingle. THis was my first bout with gastro and neuro symptoms. Fast forward about 5 years and had heaps of stress and I increased my OTC anti-acid meds a lot. A year and half ago I was determined not to catch H1N1 so I started taking a bunch of Vitamin C. It really hurt my stomach and the anti-acids weren't working. I thought I was having heart issues and then the panic attacks started. With in a couple of weeks of this I took a bad fall in the snow. I had been in pain since then. I had spent everyday thinking I was going to die.... intense muscle pain, GERD, anxiety, exhaustion, constipation, etc. I finally went gluten-free in January. It has made all of the difference in the world. I was glutened for about a week two weeks ago and I am still recovering from that, but otherwise life is soooooooo much better. My daughter is 15 and has hashimotos and juvenile rhuematoid arthritis. I had here tested for celiac with her last blood work. I had the GI symptoms and she has the autoimmune. Her cleiac antibodies with extremely high. SO I am guessing I have it too, but since I am gluten free the blood work wouldn't show it. She and I are a pair. We are very close and learning together. My main goal is for her to stay healthy!!!!

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My trigger was when I got pneumonia about 7 years ago and I was put on a strong course of antibiotics. Does it seem like 90% of everyone's triggers involve antibiotics?

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Like many, as a child I always had unexplained tummy aches. Right out of high school I was struck with crippling anxiety. 3 years I spent getting tested for everything and nobody could explain until a doc prescribed anti-anxiety meds. Those worked for years but I became addicted to them so had to do the bio-feedback route to learn to deal w/ that instead of taking meds (late 20s). I was in my early 20s when the "IBS" started. The pain was so severe but they didn't know why. Then when my son was a toddler, I had a fainting episode and the blood work resulted in Thyroid meds. Continued for years w/ the IBS but never could figure out what triggered it. Last summer I was told my iron count was low and for the first time ever, I couldn't donate blood. I happened to have an appt that afternoon for my thyroid check so the doc requested a total blood work up and that pointed out the anemia. From there, I went to the GI doc and in for the biopsy. For the first time in so many years, my stomach feels fine. I've been working out for the past 3 years but am just now starting to feel like I'm benefiting from it. I truly miss all the wonderful foods that I can't have anymore but certainly not the issues (physically & emotionally) that come with them. I'm now working on my little sister (9 years younger) as she is in the same place I was but her initial test came back negative. She's been just a few weeks w/o gluten and feeling better already. B)

What an interesting topic!

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In hindsight, I've had symptoms my whole life but can identify definite triggers/episodes that made things worse. As a guy, I mostly just accepted it as my lot in life. Things got significantly worse for me after my daughter passed away in late 2009. That prompted me to finally go to the doctor and my lab results were definitely positive.

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I don't think anyone mentioned this yet though I've heard it is fairly common among celiac triggers...I'm pretty sure it was lyme disease.

In May of 2010 I had a few weird episodes of breaking out in hives with trouble breathing, went on steroids for them. Soon after, I found the bullseye rash, and went on doxycycline for a month. Terrible, awful drug. It sent my candida spiraling out of control, and a minute of sunlight made me feel like I was on fire (I had second-degree burns from the sun that summer, and still have scars on my hands and feet). Immediately after that, everything went downhill and I was diagnosed with 4 months. I did have a few symptoms that had started before that time that I didn't realize were symptoms until they went away (the awful sickness during my period, the crazy candida) so I'm not so clear on that, but I do believe the Lyme and it's antibiotics were the final straw for my body.

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Mine were growing over time, starting when I was a teen and until I found out (age 31).

It become obvious & unmanageable after 1) I went on an accidentally gluten-free diet for a few weeks trying to improve my health, and then 2) went off the diet suddenly to make an overseas move. Between the stress of the move & the sudden de-glutening/re-glutening my body had just HAD IT!

My symptoms weren't obviously celiac - migraines, fatigue, acne, extreme stomach problems (c, not d). No one figured it out, even though I had two doctors ask me about auto-immune problems and I was treated for immuno-deficiency once.

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For me, I had GI issues since 14. At 30 I went on Atkins for a year (to the best of my knowledge I accidentally avoided gluten in other foods) and wow at the health improvement. Then I went off when my gallbladder croaked and was removed. I could just feel the change back to some kind of ick. From that point on it was downhill. Looking back, all the symptoms fit. Primary care and GI docs just treated the symptoms and never drew the correlation except on GI doc who mentioned it in passing.

Things really went chaotic about a year ago with constant nausea, vomiting, dizzy, the d's, etc. So much so that leaving the house became difficult. When I felt okay, I ate whatever I could get my hands on..yep...gluten crap..without knowing that would make it worse. I definitely saw a significant stress (both good and bad) component. For me it seemed as if it was there to a lesser degree but got worse under stress until one day it just went full on.

celiac is very interesting if it was not so detrimental to people's lives and so hard to get figured out.

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I am pretty sure my pregnancy was my trigger. I was 35 when I had my daughter, and was tired all the time. I blamed the daughter. You would too if you knew her. She is exhausting. But somewhere around age 39 or 40 I became nauseaus (sp?) all the time, every day. That is when I really started exploring what could be wrong. There were so many other things happening with my body that I never associated with gluten until after I became gluten free.

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