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Friends! Happy Friday! Please Share Your Story Of The Onset Of Your Symptoms.


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21 replies to this topic

#1 Invictus

 
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Posted 28 September 2012 - 02:49 PM

Did any stressful event seem to trigger the onset of your sensitivity or full-blown celiac?

Has anyone consequently lost a job, a house, or even a marriage - due to depression or symptoms related to celiac disease?

My story:

I married my high school sweetheart at the young age of 23. Little did I know - in retrospect - my full-blown gluten allergy was triggered at the age of 22 - even though it was somewhat dormant in me since I was a baby. Long story short -- I went into a deep clinical depression - that was unresponsive to medications - and subsequently my wife left two years later.

Fast forward to present day -- I have been let go by various employers because of my lethargy, frequent Doctor visits, and work performance. I had to move out of my condo and and am currently seeking refuge in my car.

Please share your story :) And remember, have an AWESOME weekend :D
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#2 mushroom

 
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Posted 28 September 2012 - 03:10 PM

Invictus, have you had treatment for your depression? Sometimes going gluten free is not enough and you need some help to get you over the hump. It sounds like you are still suffering and my heart hurts for you. Do you have a free clinic where you can go for some help??
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 mushroom

 
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Posted 28 September 2012 - 03:17 PM

I had several triggers -- I kept getting worse each time, and then would recover some. First was moving from a small one-room country school to a rough city school at age 9. Second was when I quit smoking at age 29 and I was introduced to Mexican food - couldn't decide if it was corn or wheat that bothered me (turned out it was both).. Third was a head-on accident at age 49, followed by a mycoplasma infection which left me seriously ill. And it was still many years before I self-diagnosed.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 shadowicewolf

 
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Posted 28 September 2012 - 03:36 PM

I had delt with random and spontanous "D" for years. It got to the point where i would have to take pepto bismol with me to go out. It got worse after i had a really bad case of the flu. Then i had an allergic reaction to an antibiotic. Everything seemed to spiral out of control after that. I would often throw up after i ate or had random "D". It caused me to loose about 40lbs in the span of a month or so. There was very little i could eat and i would be so hungery that i had to try something just to get it to stop (ended up being plain jain bagged salad).
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#5 NewNicole

 
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Posted 28 September 2012 - 03:52 PM

When I was 18 my mother found me unconscience with a very high fever. After spending a week in the hospital the doctor believed I had menegitis but really never diagnosed me. After that there were at least 5 hospitalizations for unknown illnesses. Finally at the age of 38 I was diagnosed with celiac disease. My doctor now suspects that when I was 18 I probably had a tropical sprue that caused my celiac to flair. I too have struggled with depression. I can remember being as young as 12 feeling really depressed. I have lost so many friends and there really is no way I could hold down a job with all of my symptoms. No one understands that it hurts to move around, or that it hurts to touch me, and why I have a constant headache, and I can't finish a sentence to save my life, and most of the time I'm overwhelmed. I never talked about any of this. I knew that it would probably isolate me more. Luckily for me God gave me the perfect man for me. He is patient with me and he never complains. For that I am blessed. Now that I have been gluten free for a year I can start to feel the dark cloud lift. My celiac still seems to come and go, but on those days that everything doesn't hurt I don't feel depressed. The world doesn't look overwhelming. I now realize that living with celiac is very difficult on your body and it takes a toll on your mind as well. Most people will never understand all that we face...I guess we can't expect them too. I figure at least now I know what I'm looking at and I can deal with each issue as they come. I hope you find your light at the end of the tunnel.
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#6 bartfull

 
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Posted 28 September 2012 - 04:32 PM

For me, I think it was when my mother (from celiac complications), my best friend (heart), a great co-worker(auto accident), and a beloved nephew (auto accident) all died within two months of each other.

Or it could have actually started when my Dad died. That was when I stopped taking care of myself. I wanted to die too. I knew I had problems with my own health but I was in denial and I really didn't care.

Those were dark times indeed. But I can honestly say now that I am happier than I've ever been in my life. I think you have to know despair before you can appreciate happiness. Hang in there Invictus. No matter how bad it gets, it can get better. What was it Janice Joplin said? "I've been down so long it looks like up to me." When you reach rock bottom, the only way to go is up. We're here to support you and prop you up when needed. ((((HUGS))))
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#7 LauraKG

 
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Posted 28 September 2012 - 05:34 PM

I had many happenings with depression because of my illness. It's affected my work and relationships too. I feel you guys out there. Stay strong and keep moving forward
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#8 nvsmom

 
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Posted 28 September 2012 - 07:14 PM

Invictus - You've had a tough time. I hope things improve for you very soon. (hug)

No sudden onset to celiac for me. No trauma or anything. It was just always there. I think I've had celiac my entire life. I remember curling up on the couch after eating with stomachaches. I asked my mom to take me to the doctor for it sometime in my early elementary years; the doctor said, 'she is one of those people who gets stomachaches after she eats' and left it at that. So helpful... thanks doc.

My mom told me that even as an infant, I had trouble with 'C' to the point where they had to help me get things moving with thermometres. This is back in the day when they started babies on "solids" consisting of some wheaty gruel within a child's first month of life. Geepers.

I was diagnosed at 38.
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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#9 LauraB0927

 
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Posted 28 September 2012 - 08:49 PM

HAPPY FRIDAY!!! I always had low iron levels but when I was 19 I got a horrible case of the flu and the iron levels plummeted ever since. I needed an iron infusion because I wasn't absorbing iron pills (go figure) and it helped for a little while. Now I'm 28 and I only developed GI symptoms in April of this year, right in the middle of my first semester in nursing school - needless to say I was super stressed. After three days worth of ridiculous abdominal pains I saw a GI, they ran a blood test to prep for a colonoscopy (had some red stools) and BAM! - there was my Celiac diagnosis. I still cant figure out whether it was the flu or the nursing school that set off the Celiac.

I'm a social worker and I cant help but be concerned about your depression and living status right now. Can you go and apply for Medicaid so that you can get your health benefits back? Applying for SSD/SSI benefits could also help you get reduced or free housing depending on the state you live in. It will also help in finding a doctor to help with the depression. I'd like to help in any way I can - please feel free to message me. My thoughts are with you!!
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#10 mbrookes

 
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Posted 28 September 2012 - 09:13 PM

I understand that a physical or emotional trauma can set off latent Celiac. I had a bout of breast cancer, which, let me assure you, is physical AND emotional. Shortly thereafter I started with the nausea and diareah. I kept seeing my internest... had gall bladder removed... took medicine... no improvement. Finally, I was so depleted that my dear husband took me to the emergency room where my b/p was 60/40 and they couldn't find a pulse. After several days in the hospital with no improvement the GI on call looked at my records. Her first question was "Has she been tested for celiac?" The rest is history. Endoscopy and no more gluten. I am doing great and life has never been better. Thank God far the accidental encounter with a doctor who understood Celiac. Otherwise, I would be dead.
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#11 NorthernElf

 
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Posted 29 September 2012 - 06:42 AM

Lifetime history of GI issues - scope when I was in college, ultimate diagnosis of IBS. Lots of reflux issues, headaches, bloating, tiredness but still doing the things I needed to. I got married, had 3 kids and tried to stay away from processed foods and fatty foods but not religiously and still had issues. Tried a variety of prescription reflux meds.

When my third child was almost 2 (he is now 11) I got a virus that was so bad I couldn't keep anything in for a week, lost 5 pounds I didn't have to lose, and ended up in the hospital emergency room getting a couple of bags of IV fluids and a shot to stop my intestines from spasming. I just wanted to die ! Flus don't last 7 days...ugh.

It took me a year to figure out how to eat without getting sick. During that time I had a celiac blood test (negative) and waited almost 5 months to get the endoscope - only to find that my doc ordered it for reflux damage testing & not celiac. My doc didnt' think I could have celiac because of the bloodwork. I even asked the scope doc about celiac right after & he said he wasn't looking for it! :angry:

Fast forward to now - I am very sensitive - could be a gluten detector. I am very careful what I eat. No reflux issues at all (no meds) and I have learned to cook gluten-free - most meals we eat are but we do have a separate island for the gluten stuff.

Interesting - I do have some wicked joint issues that are still undiagnosed. Rheumatoid bloodwork is negative & I had an MRI of my head & neck that turned up "MS like lesions" but after a neurologist appointment & further testing, MS is 'highly unlikely'. Anyone else see that article about brain changes in celiacs ???? Kinda scary.

I get frustrated because I am classic celiac, very sensitive & bend over backwards to avoid gluten, cook & bake gluten-free...but on paper I am still not a celiac (no tax breaks). The neurologist even suggested I get tested again..........which of course is impossible !

OP please seek some help. I am in Canada & not familiar with resources you can access. Living in a car you are likely to eat processed food and your chances of getting glutened are very high - and depression meds might help you.
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#12 Invictus

 
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Posted 01 October 2012 - 11:04 PM

I am very adamant about eating unprocessed foods. I eat whole foods; no grains. I don't eat anything that is questionable
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#13 Adalaide

 
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Posted 02 October 2012 - 10:25 AM

I've had symptoms my entire life. Sometimes they've been worse than others. Then... everything in my life got great and then bad all at once. I met a wonderful man who turned out to be a great love of my life. We decided to get married and all was well. I was living with my best friend who also had met a great guy and was planning on getting married so life was wonderful.

Then my fiance's sister caused a whole buttload of problems for us. I'll spare the details because they aren't anything I'm willing to share but leave it with the fact that I have a not so great past that she managed to get some details on. She didn't want me to marry her brother and in an attempt to break us up shared these details with the entire rest of his family.

Then his mom had a complete breakdown and became the world's foremost drama queen over not being invited to our wedding. Never mind that we weren't having a wedding, we saw no point in wasting the time, money, etc on all that crap. We simply wanted to get hitched and move on. Nope, she had to have a fit that she wasn't invited to an event that wasn't taking place. So... queue the wedding plans. The place, the dress, the crap. I wore a black knee length prom dress, complete with black veil in protest of the "wedding" to which we invited 6 people other than us and our newest and most recent bishop. So total 10 people but overall it was such a completely stressful event that I was sick for weeks leading up to it and I still regret bothering. We didn't have a reception, we told her if she wanted to celebrate she could pay to take us all out to lunch afterward. We went out for pizza.

Three months later I got an IUD. A month after that my new husband had a lump removed from his neck which turned out after quite a scare, not to be cancer. This was followed promptly by my migraines becoming chronic to the point of spending the entire summer not leaving the house other than to see the doctor. I was locked in the basement all summer avoiding light as much as possible. We ate dinner after sunset because that was when I could stand to be in the kitchen to cook. After nearly three months and no answers from doctors as I in desperation one night was talking to my best friend I finally had a light bulb moment. The only time I ever suffered migraines was while on birth control. I went back to the doctor and had the IUD removed and the migraines promptly stopped. This was followed immediately by an unexpected pregnancy and loss. I fell into a deep depression after that and was just climbing out as my celiac went into hyperdrive.

I noticed on a Sunday night before our first anniversary that my left ankle was swollen. I wasn't particularly painful and I didn't remember any trauma but went in to the doctor the next morning. I was in to a specialist by the end of the week and had been scared witless with warnings of pretty much everything. RA, lupus, lyme, dvt, MS I had doctors throwing more letters at me than I thought the alphabet even had. To this day the swelling has only worsened. My left leg swells all the way up to the hip, nothing helps and it is extraordinarily painful.

Over the next few months the pain set in. Deep pain the tore at my soul and hurt every moment of every day. With no other explanation I eventually got a fibromyalgia label. I was tired. So tired that I could frequently not even sit up for more than an hour or two. Not sleepy, just physically weary. My memory went. I honestly remember very little of my marriage after I started getting sick and until my diagnosis. I remember big things. I remember general things. I remember no details at all. This bothers me greatly because previously I worked support at a call center helping other agents on the phones. I had such a good memory that when the told me what the issue was I could tell them the number of the resolution in our support program to look up, and there were thousands of articles. I didn't remember all of them of course but I knew dozens of them by number. Now I can't remember the name of that really cool movie we went out to see. I was stopping in the middle of sentences because I forgot I was having a conversation. I'd stand there like a moron for a few seconds then realize I had been talking and look at my husband and ask what we were talking about.

I have had a lot of other symptoms that haven't been nearly as life altering for me. Such as the GI symptoms. Frankly, if it had only ever been the GI symptoms, which I've had since I was a little little girl, or other similarly non-life altering issues I may not have quite the drive I do to stick with the diet.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#14 kittty

 
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Posted 02 October 2012 - 11:23 AM

I didn't have a sudden onset - just a very gradual journey. One symptom after another popped up, and then they gradually got worse. I'm pretty sure the celiac symptoms started in my early 20's, but I also had crazy behavior issues as a very young child which could have been related. Even way back then the doctor suggested a food-related cause, but my stuffy family didn't really buy into that kind of advice.
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#15 AfterAll

 
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Posted 02 October 2012 - 01:19 PM

I am sorry you have had such a hard time with this. I am relatively new to Celiac disease, and to these forums.

I have always had a sensitive stomach. It has been getting progressively worse over the past 3 years, but never a full blown gluten allergy. In January I gave birth to my second son via emergency c-section. I began to feel worse and worse and by May was dx with Celiacs. A lot of my symptoms are also things that happen naturally after having a baby (lethargy, hair loss, depression, etc.) so it was hard to pinpoint. I have def not felt like myself, but I don't think it is full blown depression. They say that it can be triggered by surgery, pregnancy, childbirth, stress... I had all of those things.

I have been sitting at work lately wondering how the heck I am going to cope when I feel like I am going to fall asleep. Luckily my job (teacher) doesn't give me a lot of downtime to contemplate this and I am constantly on the go.
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