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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

#16 Bexxa

 
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Posted 02 October 2012 - 02:21 PM

I think it was a combination of things that set off my illness. Before the end of August when the severe symptoms came out, I had noticed symptoms such as a rash - I actually convinced myself it was some weird parasitic rash because it seemed to have come out exactly when I was poked by a king crap leg - and also bloating, chronic constipation, and reflux. I was diagnosed lactose intolerant in 2007 and I assume this may have also been when the gluten intolerance started.

I think what set my illness off was my eating disorder - a combination of severe anorexia and bulimia. I don't think the anorexia was super harmful in term of gluten intolerance but the bulimia was the bad one. My binge foods were carbs, all carbs minus some lettuce, ice cream, and chocolate. I think that just made everything a million times worse, whatever problem was there was exacerbated. However, I also might have to consider that my brain injury may have played a part as it caused quite alot of changes in my mood which caused an increased in carb eating before my eating disorder took hold. I started loading up on carbs to deal with my depression in 2005 which resulted in a 30lb weight gain (that December is when my anorexia began). I also think the problem was that when I was in recovery from anorexia (re-feeding) I was on a carb-heavy diet with tons of gluten in it so, my intestines that hadn't had any food in ages were being pushed these massive amounts of gluten, I think it was just a bad thing all around to do (if I could go back, I definitely would NOT do the same re-feeding process).

Oddly, months after I successfully go into recovery from my eating disorder (both anorexia and bulimia) my body decides to go into some sort of crisis which is what happened in August when I couldn't get out of bed for a week. I had crippling abdominal pains and I was exhausted. I barely ate and what I did eat was (unfortunately) pasta and crackers. I had a CT scan, 2 ultrasounds, was in 2 doctor's offices, was in the ER. No one knew what the hell was wrong. I came upon gluten intolerance myself. I cut out gluten from my diet and within 3-4 days it was like heaven opened up and a miracle took place. And just in time too, as college started just a few days later.

Everyone told me the symptoms I was having all along were something else. Bloating (eating disorder recovery), chronic constipation to the point of being in the ER once (eating disorder recovery), rash (ezcema which runs in my family - even though it never went away in 3 years time and actually got worse just before the August crisis).

So, there's a combination of factors at play . Basically, it was all down to over ingestion carbs, at least that's what I think.
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#17 mushroom

 
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Posted 02 October 2012 - 04:31 PM

Bexxa, you have sure been through a rough time with food :unsure: It must be hard for you to look at food and not feel like it is your enemy. I am glad you are one strong gal (yay!!!) and were able to overcome your eating disorder. The celiac thing is a low blow after that :rolleyes: Yeah, everyone always tells you a bunch of stuff which is wrong, and in the end listening to your own body and what it is telling you is often the only way to find your way. Your "eczema" rash may well be dermatitis herpetiformis, the skin form of celiac. I hope that is clearing up for you too. And you are just in time to get the most enjoyment out of your college years.

Good for you. Good health wishes and happiness forever. :)
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"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"

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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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#18 jaynekellimusic

 
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Posted 02 October 2012 - 06:51 PM

Invictis, I'm so sorry to hear about your continuous struggle.
Since the stomach is linked to seratonin production...and can be badly damaged by gluten, you may need help in boosting your gut with probiotics and vitamin B for more energy.
It took me several years to get my energy up and I still struggle with it if I'm not careful.
Gluten may still be sneaking into your diet somehow if things haven't improved. :(
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#19 zamm0

 
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Posted 03 October 2012 - 01:04 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.

Same here. In the last 12-18months I started getting intermittent very slight stomach aches and also 6 months prior to this DH eczema started. I had eczema as a child at times and just put it down to cheap soaps and detergents and managed the condition by being mindful of this and using aqueous cream. In the back of my mind though I knew something was not right. A blood test 2 years ago failed to show anything as was only getting DH then and I doubt they tested for celiac disease. A more recent blood test confirmed celiac disease. Around 3-4 years ago I did go through a couple of stressful times with work and at home but other than that I'm unsure as to what triggered things. One thing I will say is that I did think that maybe I'd somehow induced things by my diet - I used to drink very strong coffee every morning and consume lots and lots of wholemeal bread and cereal (even adding wheatgerm to increase the protein content) because I do ALOT of competitive sport.
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#20 joolsjewels

 
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Posted 03 October 2012 - 03:42 AM

Invictus, thank you for you frankness. I think you honesty has touched several of us who are dealing with depression right now. I have had a right time of it since the spring. I decided to tell my friends on facebook the other day what was wrong with me. Some ignored, most were supprtive, but one was telling me how selfish i was. This was even though i explained my Medical condition. Duh! Anyways

I have probably always had a problem with gluten. There was no major incudent for me just a worsening over the years. I was first diagnosed with lactose intolerance as a baby. Some silly military dr told mom that i would grow out of it. Not! I started having problems with lactose agian when i was about 12 which coincided with a severe depression. As a teen and college student, i had female problems which led to a diagnosis of polycystic ovary syndrome. It was also during college that my fibro symptoms started. Over the years, i developed digestive problems, daily migraines, the depression came back with a vengence just to name a few. During this time i was being treated for infertility and chopped the depression up to hormones and the emtional roller coaster. Eventually i had my gallbladder removed, found out msg caused my migrines, and i had to avoid gluten and lactose at all costs. The fibromyalgia stopped me from continuing my career as a sign language interprter to the deaf. At the time, my hands and arms hurt so badly i could not write a grocery list much less sign for hours on end. I had to resign a job working in a kindergaryen class b/c i was grieving and depressed over the infetility. It was difficult for me to be around small children. It was not until years later that i was diagnosed with gluten intolerance. But even still, my body was not repaired itself. Perhaps it is b/c of so many years of going undiagnosed.
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#21 Pegleg84

 
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Posted 03 October 2012 - 10:37 AM

Wow, I am always so amazed at the things we have gone through, and have been strong enough to get through. It makes me grateful that I stopped eating gluten when I did, and that my situation was -in comparison to so many experiences- not so bad.

I joke (ok, half-joke, it could very well be true) that my Celiac was triggered by working at a pizza restaurant for several months, and eating more than my share of pizza and pasta, and probably breathing in more than a little flour in the process. I know that wasn't the only reason, but that is when I lost a good 5lb or more in about a month (despite being bloated all the time), and started feeling like crap after I ate anything.

I also had a hard time with depression and anxiety prior to going gluten free. Looking back, it was one of my earliest and most consistent symptoms, though I never would have linked to gluten until my mother was diagnosed with Celiac, and my sister had a frightening anxiety attack and overdosed on her medication, landing her in the hospital and scaring the shit out of me! She had developed ulcers due to the stress, and while checking that out they also discovered evidence of Celiac. She's been much better after going gluten free. My anxiety was never nearly as bad, but it was enough to make me have random anxiety attacks, and caused a lot of problems in my relationship.I went gluten-free a year later (self-diagnosed, technically. My blood tests were negative, but so were my sisters. There's Celiac on both sides of our family) and have been much better in the depression/anxiety department since. If I get glutened, that the symptom that bothers me the most.

Invictus, your story is rough. really rough, but it also sounds like you're trying to be tough and positive. If you've only recently gone gluten-free, stick to it. Things will get better. That said, if depression is really really bad, going gluten-free won't solve everything. You might still need other therapy and/or medication. But it should get better. You might want to check out the Gluten and Behaviour board on this forum, which focuses on just those issues.

To everyone else, man, we've gone through a lot! But it's good to be honest about these experiences, especially since it's hard to talk about it with our family and friends sometimes.

happy healing to all.
Peg
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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#22 AVR1962

 
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Posted 04 October 2012 - 10:40 AM

I was having digestive issues, then become very tired- sleeping 10-12 hours a day. I knew I was under alot of stress with a family situation but I could not seem to get better. Thinking perhaps my metabolism might be sluggish I did a liver cleanse. Oh boy, what a mistake....this was just before I turned 48. I was a mess!!!!! Not only had the liver cleanse did what it was supposed to but it did damage so I was dealing with the repair of damage done and learning to live life all over again....it was like I went to bed one night and woke up the next day in someone else's body. I am still in recovery, this is nearly two years later. I work part-time as a piano teacher and had to let go of a couple more advanced students because my brain and my eyes could not keep up with the music. There's no way I could have held a full-time job in the peek of my symptoms. Because I have had to concentrate on my health so much the past 2 years I feel my marriage has suffered, although my husband does support me. And yes, I have struggled with energy and depression. I find I do so much better when the sun is shining and it is warm outside. I have to be aware to keep myself going and line up projects to keep me busy. I have come a long way from what I was nearly 2 years ago but I am not fully back to myself yet.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.




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