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Is This Anyone Else?


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#1 tuxedocat

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Posted 15 May 2012 - 06:47 PM

Basically - until I was gluten free, I was in a complete fog. Spacy, detached - learning issues despite testing with high intelligence, perpetually confused, ditzy. I had trouble holding any but the simplest jobs. Couldn't think my way out of a wet paper bag, and later on, struggled with brittle Graves Disease which impacted my ability to do physical work. Had trouble learning to drive, following directions... constantly collided with things and dropped things. There was a long time that I was suspected of being on the autistic spectrum and or severe ADHD. I felt disconnected from my body to a very severe extent and like my thoughts and feelings were in pieces that I couldn't make sense of. I dropped out of high school, and struggled in college classes.

When my diet's handled, I don't have ANY of this.

Gluten issues didn't even begin to enter suspicion until 2007 when I started actually experiencing physical symptoms, though a sign could've been in 2004-2006 when I was on Atkins and mysteriously actually felt competent for the first time. Then the suspicion got shoved under the carpet again because I was found negative for celiac and my symptoms were chalked up to graves disease.

I recently went back on gluten free and find I feel a lot better.

I am a perfectly normal and functioning adult human being when my diet is under control. It doesn't change the fact that i am 38 and I've lost most of my life to being in a fog :/ I may have to repeat some of my coursework this semester because it was so bad before I went back on gluten-free.

Most recently, I lost two years on account of being sick (let go from previous job, had a flare up of my thyroid again, and couldn't go back to doing physical work) so I went back to school - but if I had to work, I have no idea what I'd do because I've been out of that field for a while now.

:/
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2007 - dx'd with Graves' Disease
Suspected DH (no biopsy)
Tested negative for celiac (after gluten free two months)

2012 - Gluten free again after suggestion it might help my thyroid symptoms. Many strange one-off symptoms cleared up. Brain fog gone.

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#2 dilettantesteph

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Posted 16 May 2012 - 03:59 AM

I lost many years due to this condition. I've got a job now, but it isn't optimal and I'm looking for a better one. It is going to be a long road. I'm so glad to have finally been diagnosed.
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#3 RuskitD

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Posted 01 June 2012 - 05:45 AM

Yes, I too lost a lot of my life to gluten. Of course, I didn't realize it until reading about celiac, and the light bulbs went off in my head. (of course THAT could never have happened, had I not went gluten-free! I couldn't think while eating gluten!)

My parents were poor farmers and we never had health insurance. In one way, that life saved me, because we grew our own food. What is now called "organic". Very little was ever purchased at the store.
Mom made everything from 'scratch', including canning our own pickles and ketchup. Our meat was from what we raised.
Dad was picky about how he fed the animals that he butchered for family consumption, and how the milk cow was fed.

I was an asthmatic, sickly, wisp of a child, to the point my parents were teased that they never fed me. My uncle in another state was a dr, and his wife sent my mom a nutrient drink for me. After that drink, I got obese, and fought my weight the rest of my life. (wish I knew what that was!)

While I was a good student for the most part, I have very little memory of much my life, childhood included. I am floored at how some people remember details of their childhood, where I can't remember years! Celiac brain fog now explains that to me.

As an adult, I never caught viruses. I read here, somewhere, about our immune system being in such overdrive battling the poison we kept putting in, that some of us don't catch viruses. That makes sense. I have not had a cold in 35 years, or the flu in 30.
However, I still live in a farming community, and every fall for as long as I can remember, I get a lung/asthma/sinus problem. I figured out years ago it had to do with harvest. Now it I know why! Gluten in the air!

I can trace IBS symptoms to the poorest times of my life. IE eating more 'cheaply' by eating breads and pastas.
I can trace my worst memory lapses to that time also. My poorest times were my most stressed, and I always thought it was due to 'nervous breakdowns'. Now I know my missing parts were induced by gluten.

Though I never 'caught' illness, I have been ill all my life. I just ignored most of it and went on. Thats life and aging, right?
Dr's offered pills to mask symptoms, but I always refused. I thought it was part of living to be sick and aching.

The 30+ years of joint pain, boils, swollen lymph nodes, raging heartburn, bouts of disabling exhaustion, 'sensitive system' that gave me "D" or constipation, depression, low self esteem, grumpiness, sinus aching, anal itching, constant upper back pain, edema, hair, skin and nail problems, etc... have all disappeared with going gluten-free.

Being sick isn't part of living.

I am more than a perfectly functioning human now. I have a sense of humor, I laugh! My family would SLAP food out of my hand, were i to try to eat gluten again. (which I never will!) They love the new me, but not more than I do! I feel like I have been given a second chance at life!
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#4 Erin80

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Posted 02 June 2012 - 09:20 AM

Wow, guys, these posts make me choke up in tears. I too feel my last 20 years or so have been lost. I am so thankful I have finally found something that works (which is to give up gluten). I messed up royally in college, stayed at a job I hated, all because I had no energy or joy for life. I turned to alcohol for some bit of solace.

I ate my "nutritious" breakfast every morning, which consisted of a sandwich of whole-grain bread and soy burger, unintentionally poisoning myself for the first meal of the day...

I now feel so much better and rested during the day. I have only been gluten-free for three days, but I want to shout from the rooftops how much better I feel. Although I regret many, many decisions I have made while in the "fog" I am at least glad I feel better now and can have a better future.
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#5 a1956chill

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Posted 02 June 2012 - 10:57 AM

The first episode of (what I now know is) DH that I remember I was 15 years old .The first "problems" (as my stepmother would call them :rolleyes: ) I can remember I was age 8.

I was not "officially" diagnosed until I was 54.


That is A LOT of time between first symptoms and diagnose <_< :angry: :( :angry: :( :ph34r:
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#6 woodnewt

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Posted 19 June 2012 - 09:17 PM

Not my whole life. I lost my teen years to something else. I strongly believe I lost only my college years to celiac disease. I had a severe GI infection my first semester, during finals, and after that is when I believe I became gluten intolerant. I was not diagnosed, however, until years later and it severely affected my ability to live a functional life. Attending classes was extremely difficult. At one point I was in a wheelchair due to multiple stress fractures in my leg bones and thought I was going to be disabled for the rest of my life. I ended up only able to go to a community college taking 3-6 credits a semester for an AA degree. It's only now that I've finally gone back to University full time for my BS when my health is finally under control.
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#7 genieb

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Posted 25 June 2012 - 02:04 PM

I lost a lot of time to misdiagnosis and mistreatment, including the years most people are getting established in their careers and having children. When I first made the decision to go gluten free I was of course afraid that it would be another dead end and I wouldn't get better, but I was equally afraid that I would. I was afraid that if I had suffered for all those years when the answer was so simple I would become even angrier and more bitter.

Fortunately I was wrong. I experienced marked improvement very quickly and as the symptoms went away, so did all that anger. I can't get the lost years back. But if I would continue to lose more time to anger and resentment that would be on me. Life is too short to waste any time. All I can do is go forward from where I am and try to live each and every day to the fullest in the most positive way I know.
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#8 Starlababy

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Posted 26 June 2012 - 01:43 PM

Hi.I am 54. Have had alot of problems with my health, but could find no reason. I have fatigue, joint pain, leg cramps, cronic diareah, anxiety, panic attacks, brain fog, anger, depression, hyperthyoid. I suspect I have a glutten intolerence, but have never been tested. The doctors just labed me with irritable bowel, but that's not good enough for me. I really need relief. I am going to try going glutten free. I will let you all know what happens.
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#9 josie656

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Posted 02 July 2012 - 03:24 AM

These posts make me emotional too. All these symptoms are ringing so many bells. It's amazing to hear people talk about memory problems because usually people don't get it at all when I talk about memory issues. I don't remember, as another poster said, whole years, most of my childhood in fact. I've been complaining of a bad memory since I was a young teen, my dad used to say it was because I blanked out my childhood because of operations (plastic surgery and stuff) but it's continued. I started getting depressive symptoms in my teens too although it didn't explode (huge anxiety/depressive) until my 30s when I was also diagnosed with ulcerative colitis. In the past I have wondered all kinds of things about what I might have. I have never got many answers from the cognition difficulties which come with a low and yet don't really seem to come under the umbrella of depression. Three years of gluten free did make me feel a lot better but I don't think memory will come back unfortunately. I didn't have the depth of low during those three years that I had this year after a few months back on gluten (took months to put two and two together unfortunately) - now I'm convinced that for me, a major factor, even more than digestive disturbance is behaviour. It's a shame it's not easier to diagnose (without a clear diagnosis we can drift back into gluten) and that so many of us have take so long to reach the discovery but at least we have. These days I keep saying to everyone, whatever their problem, have you tried going gluten free?! :P
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#10 josie656

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Posted 02 July 2012 - 03:28 AM

PS: It can also be sad to think who we may have been without gluten and what we may have achieved/experience. I can only say now, after hanging out with some incredibly vibrant 70 year olds (I'm in my 40s) that there's still time for many of us to fulfil our potential now we are free - or at least on the road to recovery.
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#11 RonSchon

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Posted 19 July 2012 - 11:07 AM

I've lost quite a bit, like a lot of you. Career, Wife, child, life that I had built.

If I dwell on that, I will be lost.

I'm using this as a way of starting over.

I recall having a lot of good times when I built my first ME, building my new ME should be even better.
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#12 Framefunnyfarm

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Posted 08 February 2013 - 08:21 AM

Yes, I too lost a lot of my life to gluten. Of course, I didn't realize it until reading about celiac, and the light bulbs went off in my head. (of course THAT could never have happened, had I not went gluten-free! I couldn't think while eating gluten!)

My parents were poor farmers and we never had health insurance. In one way, that life saved me, because we grew our own food. What is now called "organic". Very little was ever purchased at the store.
Mom made everything from 'scratch', including canning our own pickles and ketchup. Our meat was from what we raised.
Dad was picky about how he fed the animals that he butchered for family consumption, and how the milk cow was fed.

I was an asthmatic, sickly, wisp of a child, to the point my parents were teased that they never fed me. My uncle in another state was a dr, and his wife sent my mom a nutrient drink for me. After that drink, I got obese, and fought my weight the rest of my life. (wish I knew what that was!)

While I was a good student for the most part, I have very little memory of much my life, childhood included. I am floored at how some people remember details of their childhood, where I can't remember years! Celiac brain fog now explains that to me.

As an adult, I never caught viruses. I read here, somewhere, about our immune system being in such overdrive battling the poison we kept putting in, that some of us don't catch viruses. That makes sense. I have not had a cold in 35 years, or the flu in 30.
However, I still live in a farming community, and every fall for as long as I can remember, I get a lung/asthma/sinus problem. I figured out years ago it had to do with harvest. Now it I know why! Gluten in the air!

I can trace IBS symptoms to the poorest times of my life. IE eating more 'cheaply' by eating breads and pastas.
I can trace my worst memory lapses to that time also. My poorest times were my most stressed, and I always thought it was due to 'nervous breakdowns'. Now I know my missing parts were induced by gluten.

Though I never 'caught' illness, I have been ill all my life. I just ignored most of it and went on. Thats life and aging, right?
Dr's offered pills to mask symptoms, but I always refused. I thought it was part of living to be sick and aching.

The 30+ years of joint pain, boils, swollen lymph nodes, raging heartburn, bouts of disabling exhaustion, 'sensitive system' that gave me "D" or constipation, depression, low self esteem, grumpiness, sinus aching, anal itching, constant upper back pain, edema, hair, skin and nail problems, etc... have all disappeared with going gluten-free.

Being sick isn't part of living.

I am more than a perfectly functioning human now. I have a sense of humor, I laugh! My family would SLAP food out of my hand, were i to try to eat gluten again. (which I never will!) They love the new me, but not more than I do! I feel like I have been given a second chance at life!

I am so moved by your post!! I can relate, most of my life was in a fog.
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#13 Framefunnyfarm

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Posted 08 February 2013 - 09:34 AM

As I read these posts I feel so thankful it's not just me.... Don't get me wrong, I would never wish this hel* on anyone. I spent so much of my life feeling like this was in my head though...... I didn't realize until I was a teen that something was wrong. Nothing made sense at school and I was hurting all the time, and so much of the time I couldn't explain what even hurt. I even resorted to self harm as a teenager and even as an adult at my lowest moments... I so badly wanted someone to make me better. After being in a fog of depression and pain, I spent 5 years REALLY sick, getting worse everyday until this last year when going gluten free and finally getting a diagnosis of celiac disease changed my life. I am thankful for my new found wellness, as I have never felt better. I grieve greatly for all the pain and missed moments and lack of memories this disease has caused. My beautiful 13 year old daughter texted me from school this morning, she needed some information for an assignment.... She needed to know how old she was when she walked and what her first word was. I am the kind of mom who would know that information off the top of my head, regardless of the fact I have 5 children. I was SO sad.... I guessed, good thing she can't remember either :) I understand now healing is a process that involves more than just my gut.
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