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Please Help My Sister By Sharing Your Story


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10 replies to this topic

#1 revenant

 
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Posted 02 January 2011 - 12:49 PM

Hi there,
I have expressed this before on this forum, that my sister has been depressed almost her entire short-lived life (She is 16, now). These last few years she has become suicidal, has been diagnosed with "bipolar disorder" (intense anger to intense depression), anxiety, depression and psychosis (she hears voices and sees things from the corner of her eye). I would say her main symptom is an uncontrollable and reasonless rage.
(She also has had GI symptoms from birth, including childhood constipation, but it is in denial because she doesn't know how ti feels to not..But i'm getting a bit off topic here!)

She has 0 belief that these things are from a food intolerance of her own, despite the similar background of some of her family and their success (including my own ties to those disorders). Her mom and I, her older sister, both have either severe gluten intolerance or celiac, but neither of us has been tested. She tried the gluten free diet for 5 days and even during those 5 days she never had an episode of anger, in fact she was happier and calmer than I've seen her, but she doesn't accept this... Her diet is now bagels and pasta and she is in a rage all day long.


I would love to hear your stories of dealing with the ugly neurological side of gluten intolerance so that I can show them to her and maybe she'll give the diet another go. She really needs comfort and somebody who understands her right now, so any support you can provide in your stories is SO, SO helpful and appreciated! Thankyou!
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#2 rosetapper23

 
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Posted 02 January 2011 - 01:42 PM

Please read the following article that is available on celiac.com (look at the left column and you'll see something like articles and research/other diseases, and then scroll down to Schizophrenia/Other Neurological Diseases).

http://www.celiac.co...Celiac-Disease/

In this article, it states VERY CLEARLY what it is in gluten (a peptide that is also found in LSD) that affects some people so that they can become psychotic (hallucinatory), depressed, etc., when they eat gluten. They don't even need to have celiac for this to occur. Please print this article out and give it to your sister. There is solid evidence in the studies upon which this article is based.

My own son became terribly depressed and suicidal when he was 15-16, and luckily I found out that we both had celiac disease shortly thereafter. He's been fine ever since switching to a gluten-free diet.
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#3 Skylark

 
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Posted 02 January 2011 - 03:03 PM

My gluten-caused psych disorder story is in my profile. Just click on my name to have a read. B)
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#4 rustycat

 
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Posted 02 January 2011 - 11:00 PM

In my case, I have had a lifetime of anxiety and depression. Some of the other neurological symptoms were slurred speech, brain fog, rage and poor memory. I've only been totally gluten free for just over 3 months, but the change in my mental state is noticeable. My emotions are much calmer and I've only felt rage once in that period (may have been accidentally glutened), where it used to be a several times a week kind of thing. My rages left me feeling so out of control and I could never figure out where they came from, since they seemed out of character for my personality (pretty laid back).

The main symptom that I still struggle with is the brain fog and I've heard from others that it can take longer to improve than some of the other neurological symptoms.

I feel sad for the time that I've lost to this disease. Sometimes I felt like I was losing my mind. It was frightening and the doctors blamed a lot of my symptoms on stress. I wish I'd known that the solution was so simple.

Revenant, I hope your sister can give the diet a try, at least for awhile, and not lose more years of her life to the effects of gluten. She's very fortunate to have someone who cares as much as you do.
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Rickets (severe Vitamin D deficiency) shortly after birth
First trip to Dr with severe C, age 7
Infertility, multiple miscarriages, eventually adopted 2 boys (not related)
2010: Negative celiac blood test, but staying on gluten free diet due to vast improvement in all symptoms
2011: June - started low salicylate diet to improve rosacea - it worked really well!
2012: May - started Paleo way of eating. Emotions and blood sugar seem to have evened out. Brain fog vanished.

2013: May - after 4 month elimination diet, was able to add back dairy, but nightshades are gone for good (my arthritis is gone, too!!!)


#5 Muffy

 
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Posted 03 January 2011 - 08:31 AM

Gluten makes me anxious, paraniod, and rageful. I also get brain fog (which I still have), muscle twitches, dizzyness, and severe migraines. The anxiety, rage and obsessive-ness I've had since I can remember. I was having full blown panic attacks and hallucinaotry experiences by the time I was 16. Although the hallucinations seemed to fade after a brief time, the general anxiety and physical symptoms worsened. I didn't start getting the headaches until I was in my mid-twenties. Had I got the headaches sooner I may have taken the other symtoms more seriously and saved myself 2 near death experiences caused by gluten. Graves Disease (overactive thyroid) at age 21. My heartrate was 225 per minute at rest, they couldn't believe I wasn't comatose or dead already. And just about 2 years ago I had to have part of my intestines removed. I am lucky I can still function without a bag, unpleasant to think about but true.

The dangerous thing about having early symptoms that are not painful is that it doesn't seem as serious. But the longer it damages the body the more serious it will get. The migraines were/are the worst for me, it was the symptom that got me eliminating foods about 9 months ago and my anxiety based issues have severely decreased with the headaches ever since. I have a teenage daughter who just went gluten-free as well and her moods and emotional outburts are gone too.

Something else to think about is that one of the symptoms for Graves Disease is anger and irritability, and there is a strong coorelation between auto-immune disorders and gluten issues. If you have other symtpoms be sure to get your thyroid tested. And if there is an underlying thyroid issue, remember - it is still gluten related in origin.

Good Luck!




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...Muffy

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#6 LivesIntheSun

 
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Posted 05 January 2011 - 04:55 PM

I was depressed almost for as long as I can remember, since I was a young child. I was a psychiatric hospital out-patient throughout my teens, and took SSRIs throughout my teens and twenties. I believed I had been 'born wrong' somehow- I felt sad all the time, had panic attacks and rages. I would wake up sad in the morning and cry all day. I also had big ulcers in my throat and was utterly exhausted.
When I was 27 and the doctors had told me that I'd be on anti-depressants for life, and that they didn't know what to do about my throat, I consulted a nutritionist in my desperation. She said I appeared to her to be an obvious celiac and to give up gluten. Within 2 weeks my throat was fine, I had a few months of gluten detox and my depression lifted quickly, I stopped needing to sleep in the day. Eventually I gave up all medications and I've been totally med-free and non-depressed for 2.5 years now.
BUT if I get glutened I go a bit 'mental'- I cry and whine, I rage, I'm abusive and generally foul to live with. Plus I immediately get a throat ulcer and feel wiped out. I never had a proper diagnosis because one little bit of gluten sends me back into such a pit of despair that I'm not willing to do a 6 week gluten challenge and god-know-what damage just so a doctor can say, 'uh, yes, you can't eat wheat'.

I very much sympathise with you because I'm in a similar position with my father and a cousin. My father has chronic fatigue and after literally begging and all manners of persuasion possible (it took me about 5 years) he agreed to try a gluten free diet a year ago. He said he'd try it properly for three months and if it didn't do anything he's give it up. The whole family hasn't looked back, he's still too ill to work (I think his ME is pretty complex) but now he's doing things we wouldn't have ever believed possible a year ago, for me its been like a miracle, I often jump for joy! Any little bit of gluten makes him feel terrible now, so he carefully avoids it.
My cousin has schizophrenia and his mother is diagnosed celiac. I've sent articles about the celiac schizophrenia link, tried all types of persuasion possible and noone will even take him for a blood test, it drives me completely crazy! If I could I'd take him myself but I'm impossibly far away. I guess you can physically only do what you can do, keep being there, keep mentioning it, but your sister has got to want to try it. All I can say is that I feel for you and I cross my fingers that maybe sometime she'll feel differently soon. A hug!
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#7 revenant

 
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Posted 08 January 2011 - 12:18 PM

Thankyou!

Rustycat, try not to focus on the time lost.. It is a miracle that we have been given time to feel so much better for the rest of our lives! I sympathize with you though, I often feel like I lost my entire childhood to this. Childhoods can't be relived, but one can acquire the mannerisms of a child and enjoy life like never before :) And that is good enough, I think. Thankyou for sharing!

Livesinthesun, I like your name. My sister ALWAYS states that she was "Born with something wrong with her". She always feels like there is something wrong with her, she says it all the time, and I think this is one of the main symptoms for gluten intolerance/celiac... We know our bodies enough to know that life should be better, even when we haven't lived a better life. I can totally relate to how you get when you get glutened, I too become pretty emotionally abusive, self absorbed, I have mental break downs. I am so so happy to hear about your father!! Isn't it the best feeling to help another person in such a personal way.. I sympathizer so much with your cousin. My sister is often stating that she now thinks her visual distortion is schizophrenia. Hearing this makes me want to tear my hair out, but all we can do is give them the idea once, and be an example I guess... They have to hit a rock bottom and discover it for themselves... I have discovered that the best way to persuade somebody is to tell them what WE want to hear from THEM... and that is "You could be right". My heart goes out to you and your efforts! Thanks for sharing
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#8 LivesIntheSun

 
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Posted 21 January 2011 - 06:51 PM

Hi Revenant,

I thought of something to try- you can get the Biocard blood test (http://www.coeliactest.com.au/) on Ebay, and probably in lots of other places. It tests for IgA tissue transglutaminase antibodies. You squeeze some blood from your finger into a test tube and get an instant result. It got a very positive write-up in the celiac journal. I don't know whether it works for gluten intolerance or just celiac but it could be worth a try. If you bought it and asked your sister to use it, she might.
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#9 beebee28

 
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Posted 25 January 2011 - 06:38 PM

She sounds alot like me, especially when I was younger. Im now in my early 20's, and just found out I have celiacs. I want to possibly help someone else out there that may be going through what I did. When I was 16 and younger, I cycled between severe depression and rage. I would scream, punch holes in things, I even ripped a door off a hinge. I was such a thin thing I have no idea how I did that. I was always sick with pnemonia, bronchitis, fevers, and severe stomach pains. What I did eat was $1 frozen burritos, pasta, plain ground beef, cheerios or bagels with cream cheese. I would stay in my room and think about what was going on in my head and why. It was like I was my own psychologist, I knew it wasnt normal so I tried to wrap my brain around it in a rational way.

After I was 16 I was able to take my health into my hands and went vegetarian and ate mostly organic. I improved but I was still eating wheat. My stomach was always bloated like I was pregnant even though Ive always been underweight. I've had bad acne since I was 16. I cut down on gluten for the past 6 months, but two weeks ago I found out I had celiacs and have cut gluten out of everything down to my chapstick and beauty products. Im feeling so much better, my hair, skin, and nails are improving. I actually had 3 hallucinations out of the corner of my eye the first week I cut gluten out. Then I kept at it and felt even better and they didnt happen again. I hope that my story might help her. She may just need someone to really reach out and get to her understant its out of love. It might take a while to adjust to the new food alternatives. Maybe do the diet with her? I dont know either of you personally, but perhaps she's rebelling? (I had blue hair and a long list of things I did lol). Just a thought...
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Finally diagnosed with celiacs 2010
Acne 6 years
Hashimotos hypothyroid
Vitiligo
Chronic fatigue
Adrenal fatigue
Possible candida
Heavy metals borderline high
Allergic to 27 foods including wheat, gluten, eggs, dairy, citrus, peanuts, nightshades, brazil nuts, blueberries, pineapple, kiwi, sesame, sunflower, safflower, mustard...

#10 acojo

 
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Posted 22 February 2011 - 07:50 PM

HI,,
so sorry about your sib.. I am almost 50 and have battled mood swings my whole life. Lately, last 2 years, I have had "anxiety attacks" in the middle of the night.. not sure this is what they are- I just feel like I can't stay still. I am a drinker, and love my beer and wine and at first attributed it to that, but soon I found out that something else was involved. I remembered from a few years back how great I felt on a high protien diet. So, back on high protein and very little carbs. One night I just had to have a bagel,,, so I did, just before bed and I HAD THE WORST NIGHT EVER/ I just wanted to jump off my roof. So that lead me to experiment--- when I had bread/cookies/sweets, I was MISERABLE ,, mostly at night. So not sure if it was sugar or gluten, my Dr. suggested I try a gluten free diet. I am now on it-- just one day, so nothing to report. I can tell you that I work with a type 1 diabetic and when she was diagnosed at 12, she went nuts and ate all the wrong stuff-- got very skinny, didn't take enough insulin. she is now 28, has the feet of an 80 year old, and her kidneys are BAD. she just rebelled against the whole diagnosis... maybe this is what is happening in your family? gluten intolerance IS SO MUCH EASIER than diabetes!
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#11 cO_ol

 
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Posted 24 February 2011 - 10:18 AM

I had times where I would lay in bed wanting to die, and the next day be ok. Sometimes after such a night, I actually would ask myself, "Do I still want to die?" when I woke up. The answer was sometimes yes, but other times I realized that no, I don't still want to die. I knew that this was wacked. I also had the uncontrollable rages and massive emotional outbursts over the dumbest things (especially lost items). I got promoted at work, and the anxiety and depression got so bad that certain aspects of that job became impossible for me and I had to step back down. Oh yeah, the anxiety. People tailgating me on the road set my heart racing, for instance. I also had this WONDERFUL tendency to replay events over and over and over and over in my head 1000000 times without cease.

Despite the depression, I STILL knew that "depression" was a far inadequate explanation for what was going on. The non-behavioral symptoms I was having, for one thing, plus the sheer seeming "randomness" of it (never made the connection that the mood swings were related to diet other than recognizing low blood sugar though).

I still deal with this stuff even after 3 months gluten-free, but it's barely a shadow of what it used to be. I've lost items and looked for them in a rational manner! I want to live 99.9999999999999999% of the time! I don't replay stuff like the hit music station on crack anymore! I'm quick to look on the bright side!
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Docs said it was depression, which was in my case code for, "It's all in your head."
I replied (in my head, alas) with expletives that I don't think are allowed on here. xD
Self-dx'd Celiac just beginning my very bumpy gluten-free journey. My healing process is looking a lot like my deterioration was (rather non-linear)...
Praise be unto the (gluten-free, vegan) Flying Spaghetti Monster for the folks who worked so hard to raise awareness (and Internet to access it)! Y'all saved me decades of suffering most likely. :D




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