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Dear Listmates,
I had asked whether people felt they had changed self concepts developed
in childhood prior to diagnosis eg seeing self as an 'anxious' person,
that might have changed since receiving a diagnosis which may cause some
of these symptoms. I got the following responses and thankyou very kindly
to those who replied.
1)
Hi Lissy -- I've thought a lot about this stuff. I'm one of those
celiacs who are overweight (morbidly obese the doctors call it). I've
always thought there was something wrong with me (psychologically)
because I overate. I now realize that my body was craving nutrients
that it wasn't receiving because of the celiac. I've not lost nearly
as much weight as I need but I've lost some and am finding that what
began as my body craving nutrients is now habit -- and I'm trying very
hard to break the bad habits. It's not easy!
I have had the same thoughts about feeling lazy -- that I'm just a
no-good, lazy person! I now have more energy some of the time (I also
have fibromyalgia which makes my energy level fluctuate) and am trying
hard to quit telling myself how awful I am and give myself some of the
same things I'd give a friend -- caring, empathy, concern, healthful
little gifts!
It's not easy but it's happening slowly. I'm glad you brought it up.
2)
Short answer: Absolutely. I look forward to your summary.
3)
ABSOLUTELY! I have thought a lot about this ever since I read the
connection to Autism and the autistic ned to wall oneself in. The constant
sense of being physically off balance, the anxiety , the weakness,
breathlessness, pressure in the chest.........all of these lead to a sense
of danger out there .I have had therapy for social anxiety and could never
understand how my very talkative , interested self became so introverted
and anxious.........Now I know.
4)
I totally agree.
5)
You are right on the button, nutrition is everything, if only people ,
and professionals would understand that. I get so irritated when
nutrition isn't considered first.
I found that so many cancers come from the poison sprays used to kill
terminits even decades later it can still cause cancers of all kinds ,
even 30 yrs after it's been banned.
Isn't that so terrible?
Late celiac diagnosis is a real killer
6)
I was diagnosed at age 59 so I know something of
what you are asking. My kids say "Ah well that explains
all your failings as a mother" but I do not dwell on the past.
I am grateful for the energy I have now and the improved
prognosis for a healthy future. My big problem is wanting
to teach other asymptomatic gluten-intolerants that they
might consider testing ................. especially my close
relatives. They do not want to hear it. Would I have listened
if someone had suggested it to me?????????????????????
7)
Certainly I find that my physical condition changes my personality and
that being aware of that makes me able to attribute a lot to the illness.
I'm in the process of being diagnosed as a celiac, although I already
have an autoimmune thyroid condition (on hormone replacement for life)
that used to strongly shape my moods and thinking: being unable to move
and speak at times, being weak and fatigued a lot, changing sensations
and moods from fear to euphoria and back to depression and so on.
Until recently I've been having hallucinations too that no doctor could
make sense of. Now that I'm on a GF diet I have absolutely no
hallucinations, I can't believe it! Neither do the doctors! I too wonder
just how long the underlying physical condition been going on, and
perhaps what else I might have that doctors can't figure out!
8)
I love your email because it addresses something that goes straight to the
heart of many Celiacs (I am assuming....since it is true for you and me!). I
have had to reevaluate many things in my life....I am currently in a recovery
phase right now. I have had so many painful things surface and have dealt
with them and am learning to let go. Among these are many issues of
Self......especially what you addressed. Besides what you mentioned I've
also realized that I didn't have an eating disorder (well.....), or was a
little chubby because of some psychological or phsyiological problem----once
I went gluten free my body became much more slender and I now eat like a
'normal' person.....before diagnosis I ate constantly, uncontrollably, and
enormous quantities. I am not as nervous and introverted. Just this week I
had my first chocolate chip cookie in a year--as I've been on a strict
diet--and didn't have the urge to eat the entire box....and my thinking is
clear...I don't have an inherited dislexia which my brother has and I thought
I was developing! I have more self-confidence, and check my behavior when I
realize I am acting in a conditioned 'Pavlovian Dog' way
ANyway....good luck with digging into the depths....I go through periods
where memories surface constantly and i am forced to relive eras which is
good as I can analyze them in a new light...it has been amazing what a shift
in perception does to reexplain things!
9)
You raise a REALLY good point. I was only diagnosed 3 years ago (actually
self-diagnosed first and then later confirmed by a GI). In my large family, I
was the one dubbed as a "problem" growing up, since I always had stomach
aches, fatigue and "anxiety." I recall alot of tense feelings and a general
malaise which I am just coming to realize was a result of the undiagnosed CD.
I also was diagnosed about 2 years ago (again, self-diagnosed and then later
by an MD) with hypothyroidism; this is one of the twin autoimmune disorders
of celiac. Along the way I picked up severe mercury poisoning from dental
amalagams and also Epstein Barr virus. No wonder I have been tired and sick
most of my life; it was a progressive thing and I still suffer the
consequences of low energy and low threshold for stress, although I am now
99% well and run about 20 miles a week! The wreckage from the untreated
celiac has all had a lifelong effect on self-image and role in my family of
origin. The sad thing is that it all could have been prevented with adequate
medical care in the first place. I try not to get too angry about it!
10)
I have been gluten free for 17 years. I do not know when I stopped being
depressed but about five years ago I realized that I looked at life much
differently then I had for years.
I was 45 when I was diagnosed and pretty much of a couch potato. I just got
back from a three week vacation that I spent hiking to the tops of several of
the Canadian Rockies with a backpack on.
I cannot believe the change in my life. I was not even aware that the
changes were taking place...all of a sudden I realized that I was a different
person. So many people with CD regard themselves as invalids. I do not, I
am healthier at 61 then I have ever been.
11)
Lissy, I thought about this too, but never dreamed that others felt this
way! Most of my life was spent being "too tired to do anything", and
feeling in general that I wasn't to bright, and lacked ambition. :-D
I could count the days in my youth (five? six?) when I suddenly felt I
had energy enough to really push myself.
12)
I totally agree with you..that is why I have been so driven all my adult life
to find out why I fail to thrive mentally and physically.....my whole life
has been such an effort....I constantly drive myself...I really don't know
how I muster up the energy when I am so nutrient deficient. I am having a
biopsy done on Oct 14 to determine if I am celiac. I really share your
observations.
13)
I know I was always being told to 'JUST RELAX AND TAKE THINGS LESS SERIOUSLY"
and my diarreah would calm down and I'd feel so much better. I was told my
anger was causing my digestive problems or that I was trying to hide behind
them on and on and on. Finally, at age 17 I was diagnosed after having been
very sick for a very long time.
I turned 41 this year and even though I've known what the problem was since I
was 17 I still feel cheated about the 17 years I didn't know and was
constantly told it was "nerves" or anger or whatever. Even after the
diagnosis my family kept insisting they could not see why my diet had to be
"so strict all the time" couldn't I have a little treat or cheat every once
in a while. I was also told I was making too much out of having Celiac's
Disease and tyring to get attention from it. There were also many complaints
about the high cost of my "special food".
14)
Yes, indeed, there is serious psychological reorganizing going on after
59 years of being poisoned, smelling bad from gas, feeling lousy from
all the intestinal discomfort, denying feeling lousy in order to get up
in the morning, etc., etc. Both I and my two adult children are
feeling the stress of this re-organization yet going through it as much
as possible, with intense gratitutde for the turn-around. We all are in
therapy and in touch with each other on a regular basis. It is not
easy.
Last week we spent the day with my sister and her husband -- I am one of
5 siblings, all of whom are affected by the condition, yet I am the only
one who knows it and is willing to do anything about it. I cried for
days at the awareness of how entrenched pain and suffering become in
families, and how much harder that is than facing the reality of one's
potential health.
15)
I've had the same experience. I was DX'd as a baby in 1952. However, the
idea behind "celiac baby" was that the CD would be outgrown, which seemed to
happen. Unfortunately, since the problems subsided at about age 4, I was
never told about CD. When the problems started to come back in my 20's, I
had no idea what was happening. It was only more than 20 years later that I
figured out what was wrong.
During those years, there were lots of problems, very similar to what you
described. However, all the while it was going on, it always seemed to me
that there was something holding me back. There was some sort of hump in
the road that I just couldn't get over. At one point, I went for stress
counseling. The counselor had lots of good things to say but there was
little real improvement in the situation because everything the counselor
suggested somehow missed the mark and, of course, professional counselors
don't give much stock to mythical "humps in the road".
However, one of the most remarkable changes resulting from the GF diet was
that this strange "hump in the road" disappeared. I was never able to
clearly delineate it. Nonetheless, I know is that it is gone when I stay on
the diet. The only problem is that I seem to be more sensitive to gluten
accidents now so they have a tendency to throw me for a loop. If I'm not
very careful, I end up on an emotional rollercoaster.
Overall, things are a 1000% better. For example, I've been taking dance
lessons. In the past, there were always so many things that seemed to be in
the way. But, once I started the diet, they vaporized. As a result, I look
back now and see that CD has had a disastrous effect on my life. I'm
tempted to blame my parents sometimes for not telling me. However, the fact
is that they really didn't know any more than the doctors. Besides, all you
can do is play the hand you're dealt and do the best you can.
There has been some conditioning in terms of behavior patterns. I do find
that I have to be aware of when I am falling back into old patterns. I
think this would be normal. Everything that you go through is going to have
some sort of effect on you. I'm sure that with CD, these problems are
chemically based. Leaky gut syndrome allows chemical substances into the
blood that normally don't end up there. As a result, our experience is
probably somewhat similar to drug abusers. Only, in our case, it was not
voluntary. Further, going on the GF diet is like kicking the habit. The
problem is that you can't undergo years of chemically altered existence
without having it have some long-term effect. It's just the way life is.
16)
A 17 months out in our group was very sick before diagnosis. Bec. of his
celiac, his sisters were tested & one tested positive. At age 8, her only
symptom was short statue. She preferred reading to sports. As time went on,
however, I'm sure she wouldn't have had energy for many things normal kids do
& are supposed to do.
It's almost better to be obviously sick w/out a diagnosis, because we do cut
those kids some slack: "can't do it, always been sickly..." But, if you
don't look sick, you must be lazy instead. The older sister is so lucky her
brother was sick enough to be diagnosed with celiac. Her life will be so
much more than it would have been w/out a diagnosis. Saw her a two weeks ago
& she just glows now that she is on the diet.
17)
I too was diagnosed late. It took me about two years
to find out what my problem was. Aside from losing a
lot of weight, I was suddenly very anxious, all the
time. This was not my general nature. Now, i find that
when my b12 levels are low, I am tired and more
anxious than usual, just as you described. I need a
b12 shot every month, am often late with it, and I do
feel a difference.
18)
I had extreme anxiety and feeling of impending doom all of my childhood.
I was labeled learning impaired and didn't learn to read until 5th
grade. I had, into adulthood, difficulty with locating words that I
knew and so stammered or stopped talking in the middle of sentences, and
had an inability to concentrate. I had fears that I knew quite well
were ridiculous, such as falling through the stairs (they were open at
the mall so you could see through them). I realized that I could not
have fallen through if they had put me through a meat grinder. I also
feared that I had to be there for my children and therefore have a car
and be able to move at a moments notice even when they were in school.
I did not like to depend on anyone.
I still did not know that I had celiac when I was referred to a
nutritionist for extreme nutritional deficiencies. (No one asked why I
had these deficiencies when I ate well and was overweight all my life)
Anyway I was treated with vitamins 8 times a day.
Within 3 to 4 weeks all the lifelong anxieties left me. I was so cured
of my anxiety that I took a job in a prison as a teacher. My teacher's
aide was a murderer of 5 people. I had no fear. I had to depend on the
guards to let me in and out of the series of iron gates. No fear, no
problem. Without the vitamins that would never have happened. All this
and I was still eating wheat and not knowing that I had CD.
So I believe that it is not the CD that causes the problems, it is the
nutritional deficiencies caused by CD that is the ultimate problem that
gives much of these symptoms. Look at B3 deficiency. The symptoms are
the four "D's"- Diarrhea, Depression, Dementia, and Death or something
like that. They knew that in the 1700's when they had sailing vessels
at sea for long periods of time, and slaves.
It is really interesting when you look up the deficiency symptoms.
I believe unless we catch this disease at a really young age, we need to
continue to take vitamins because those of us, like me, who are older,
may never get a really healthy intestines again. Take care and keep up
the good nutrition.
19)
I don't think you will find too many childhood celiacs who were leaders. My
guess is most were shy, reserved and obedient.
I know I was, but am not sure my celiac condition had anything to do with it
unless it contributed to my short stature compared to my classmates. But I'm
sure the lack of certain nutrients in the blood stream influence behavior.
20)
I had the main symptoms of manic depression for 10 years, many times being
close to suicidal. Until I discovered I was gluten intolerant, none of the
drugs worked, neither talk therapy. After becoming gluten free, I discovered
I don't need the drugs. I am in a 12 step program, emotions anonymous to
help with attitude changes, learning a more spiritual way to live life. The
gluten actually causes mental emotional symptoms plus causing nutritional
deficiencies. The incomplete digestion of the gluten fractions are opioid in
nature and can cause a person to experience mania, depression, panic attacts,
and even schizophrenia. Write me if you want to know more. I will have a
web page up soon which will have much more information.
21)
Lissy, Hello. I am a 33 yr old celiac and I am postive that being an
undiagnosed celiac as a child has had a profound effect on me
psychologically. I was always the smallest, anemic, got tired, injured, sick
all the time. When I was diagnosed 3 years ago I started therapy and have
realized that I base everything I do on fear! I am afraid of getting hurt,
afraid of having fun, afraid of eating, afraid to get things started...the
list goes on. My friends would surely fight me on this one as I seem to be
such a go-getter, but deep down I am anxious about most of the things I do.
22)
I completely agree that this disease has changed my "personality." My celiac
condition developed as a result of a pregnancy seven years ago. Over the
course of two years, I went through some horrific moments of panic, phobias,
hearing voices and just plain thinking I was loosing my mind. The "B"
vitamins definitely helped this. I also had tetany which came about when I
panicked. That was remedied by taking calcium supplements. But the panic
attacks got so bad that I wouldn't drive anywhere alone or couldn't go into a
store or public place. When I think of all the things I used to do by myself
before this disease took over, I can't believe it was really me. I used to
be very independent, wouldn't think twice about driving anywhere, no matter
what the distance, by myself. Now, occasionally, I still have episodes where
I get a little anxious, not any panic attacks, but the memories are still
very fresh, even though it's been over 5 years since the last attack.
It has also affected my memory immensely. There are things that I know I
should remember, but it seems like chunks of time are missing.
I don't know of anyone who has had the severity of symptoms that I had.
It's nice to know I'm not alone. Good luck to you!
23)
The psychological end of CD has been sorely neglected as far as I can see.
True that this is a rather "new "condition,and as of now the medical and
nuitritional aspects are indeed more important.However at the last local
support group I managed to attend I could not beleive how strong the desire
was for interactions along the psychological lines.Sadly this meeting as well
as the few others i have attended spent all of the time on recipes,
restaurants, and eating experiences.
Issues such as those you have raised almost never come up.
24)
Lissy: Definitely true. Sometimes I wonder what I would have been like
had I known about celiac disease at age 3 rather than at 30. Or if I
had had the support and information from this list at 30 rather than
55. However, I am happy with the evolved me that exists after partial
and then pretty much full relief of sympoms--others can't tell the
difference as much as I can. Life is good--it wasn't for too many
years. (The anxiety and the "too tired" are right on target;
irritability was result of the combination. Not good.)
25)
Hi Lissy: I read your post with interest, and it is especially interesting
to me that ADD and ADHD are thought to be related to CD, as is autism. I am
53 this month, and having recently been tested for CD, I am naturally
recapitulating much of my medical history. As a child, I was hyperactive
and emotional, so had a number of problems at school. I recently found all
my old report cards in my mother's trunk, and we were surprised how much
they read like the ones my son received! My son also fits the description
of ADHD, and something that has always niggled at the back of my mind is
that he was a placid baby until I began to wean him and give him solid food.
He was anemic when he started school, and through grade school often had
puffy eyes. I had school phobias even as a college student, and I know that
my anxiety is often biochemically based, because when I started taking an
antidepressant, it all but disappeared. As my introductory post stated, I
have stopped the GF diet until I see a GI specialist in November. It will
be interesting to see if I can become free of medications when I go GF.
Anyway, I thought I would answer your post since I have thoughts along the
same lines. A good point that diagnosis can thus lead to a better
self-concept.
26)
I agree 100%. All the things you mentioned and more are so true in my case,
my mother's case, and I'm sure in my sister-in-law and her daughter's case
(neither of which has had the courage to go through with testing or a gf
trial). I can see their personalities in me.
27)
I can identify with much that you said in this post. Only, I'm still that
way. I've been tired since I can remember. As time went on I had to learn
to say no. I still have to limit activities. I've been diagnosed 3 years
and sometimes feel worse than before. Others can get a job done while I am
wondering how to start. Or the same thing takes me much longer.
28)
Hi Lissy-as a celiac baby and then living for 55 yrs not knowing that I had
a 'condition' until it flared up badly under a stressful time last year-
has caused me to rethink much of my psycological and physical past and
reinterpret many things through this new knowledge. I wonder just what kind
of person I may have been and am letting go of many negative percptions
that I know where a result of my pain and fatigue. I would love to get into
this more but am exhausted.. we could dialogue if you wish
here is the original question I wrote:
>I have been thinking about the psychological results of having a longterm
>undiagnosed nutrition-related illness that affects your health, such as
>celiac.
>
>Specifically, I was considering episodes in childhood where I experienced
>moments of anxiety or school phobia, and others where I felt as if many
>ordinary endeavours were too much trouble. As someone who was undiagnosed
>until adulthood, I wonder how many of our enduring concepts about our own
>personalities are based on physical and cognitive symptoms stemming from
>being deficient in many nutrients? I find now that if I allow my B12 to
>get low, I can experience anxiety attacks, but I have learned since
>diagnosis that I am not necessarily an 'anxious' person although I thought
>so as a child. I have also learned that if I am 'too tired' to do
>something it may be more about nutrition than perhaps laziness/lack of
>ambition etc. Have other people had to rethink basic self-concepts once
>they became GF? I find for myself that a lot of negative self-concepts
>have changed since I can attribute them at least in part to nutritional
>deficiencies. Hoepfully this is another positive aspect of getting a
>diagnosis that may be the flip side of whatever people find is negative in
>getting this as a lifelong condition to be dealt with.
Thanks again to all who wrote,
Lissy
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