Hi all my names mike a bit of a newbie but im posting out of sheer
panic here

i have been monitoring this news group for a while

about 8 weeks ago i developed constant diahriah and slowly got weaker
and started losing weight one day i went to the toilet and there was
blood and mucous this continued and i started getting pain in my right
ribcage just under my liver

unfortunately i did what every panic stricken 30 year old male with no
history of illness (not even a cold) does and fired up google to be
confronted with everything from bowel cancer to less scary things like
ibs

about a week before my colonoscopy i discovered that i had not been
eating bread just rice fish chicken and boiled potatoes and some veg
these never caused my regular visits to the toilet and slowly my stools
returned to solid regular good shape etc this is when i started
watching everything ieat and noticed things which make me go within
minutes

colonoscopy showed a good bowel no ulceration (colitis etc) and so the
consultant suggested testing for celiac and thyroid after discovering
my mother and sister have thyroid related conditions my sister has
arthritis at 25 which they are relating to her thyroid and my mother
has thyroid and ibs her sister (my aunt) is a diagnosed celiac

this brings me to my question

could i have got to 30 and never had symptoms then bang ive got it i
also have some form of inflammation in my ankle joints left ankle at
the minute but its more in thesofttissue than the bone joint

anyone who can shed any light on this would be a godsend

thanks mike

mike mosley

My name is also Mike.
Yes you can have made it to 30 and have no symptoms or any indications of a
problem.
I am 38 years old and was only diagnosed a little more than a year ago. All
my life I kept a very healthy body weight, about 6'2" tall and about 185
lbs, I dropped about 30 lbs in about 4 months with extreme lower abdominal
pain and diahrea that I would not wish on my worst enemy. Hospitalized twice
and to every type of specialist known to man, finally to the
gastroenterologist who did three biopsy's to confirm Celiac Disease.
My kids, as I have been told, more than likely carry the gene although it
may not ever become active.
My daughter, a United States Marine should get her biopsy within a couple of
weeks, she is showing some symptoms.

Hope this helps,
Mike

Mike,

IF you've got celiac disease (CD), you didn't just get it. You've had
it all your life. You might be able to look back to when you were a
kid or in early ****s and start remembering some things that will
begin to pop out at you as you study more about CD, because it will
often pop up in childhood, not be diagnosed (few docs knew what it was
back then or just believed it was extremely rare), and then it can go
underground, so to speak, through adolescense and earlier adult years.

Personally, I didn't begin to get really sick until I was just over 30
- I thought. But I later realized, looking back, that while the blood
was not present as an adult, I had a few bouts with blood (and not
just a little, at times) as a kid around age 12, and all sorts of
other things that are often signs of CD as a kid - it just wasn't
diagnosed properly. In fact, I spent my entire Easter vacation from
school in the hospital and they were about to go in and start looking
for what the problem was in my small intestine, even though the x-ray
studies never showed anything conclusive. Fortunately the bleeding
stopped long enough for them to hold off on the major surgery (looking
for something called Mekels diverticulum at the time - which was only
just their theory). I was discharged with the understanding that I'd
tell my mother if I ever had bloody stools again. You think I ever
told her when it happened again?!? Not on your life! Even at ate 12,
I decided that nobody was going to cut out a few feet of my small
intestine just to find out IF I had what they suspected. I never told
a soul again (fortunately it was never as bad as the night that landed
me in the hospital). And since that was 1960, I can look back and see
that I made an outstanding decision to keep my mouth shut. They'd
never have figured out what it was back then anyway, but I'd have had
to go through major surgery and lose some of my small intestine just
to confirm that they couldn't figure out what was wrong with me.

Fast forward to slightly over age 30 (more than 20 years ago) when it
resurfaced with a vengeance: I also had a distinct pain in my upper
right abdomen, just barely under the lowest rib. I was checked for
liver problems (none), gall stones (not even a little tiny grain of
sand), and nothing explained the pain in that area. At times I
noticed what seemed like a fairly hard mass in that region when the
pain was present, but not always. The first time I felt it, I was in
a panic, thinking I had a huge tumor that I'd never noticed before the
pain started. It turned out that my entire GI tract was so affected
by the damage done in my small intestine, that I was having spasms in
the large intestine where the ascending colon makes the turn into the
transverse colon. I was "merely" feeling muscle spasms in that spot
(why there, I still have no idea). Even the colonoscopy didn't really
pick up anything in that area. I was in such bad shape by then that
much of what I ate literally went completely through undigested.

You can get all sorts of symptom lists here and on web sites, but at
this point, don't lose any sleep over it - just go through the
diagnostic routine(s), but MAKE SURE your physician is highly
experienced with celiac disease, or go find one who is. S/he needs to
know which blood tests are worth using, and which ones aren't, and
needs to know that the "gold standard" is an endoscopic biopsy of the
small intestine. (Yeah, I went through a couple of colonoscopies
before they figured out they'd looked in the wrong end. <<<grin>>>)

Assuming it's not thyroid cancer - and even that's quite manageable in
most cases - you can relax. Either thyroid problems or CD can be
quite well managed once they're properly identified and appropriate
treatment begins. In the case of CD, it's just a bit of a steep
learning curve at first to learn how to read labels on food
(especially if you don't live in a country that requires gluten to be
identified or ruled out in a food). But once you've learned what you
can eat - and where - over a period of time you'll begin to settle
into a very normal routine and CD can become more of a minor
inconvenience rather than a major life issue for you. And fortunately
these days there are some really good alternative ingredients for all
of my favorite foods that I went without for nearly 10 years (pizza,
chocolate brownies, sandwiches, etc.). I feel like I eat rather
normally, and just have to be careful which restaurants I eat in, how
they prepare food, what possible cross-contamination issues may exist
in certain restaurants (or even our own kitchen), etc. Again, that
comes with time, and what's life-changing at this point, really can
become rather "normal" seeming down the road if it's CD.

Of course, that requires that you absolutely, positively, NEVER
"cheat" on your diet. If you get a definitive diagnosis, don't ever
play the common game of "denial" that comes with any life-changing
condition, where you start feeling really good, begin putting on
weight again, and wonder after a few months or a year or so if MAYBE
they got the diagnosis wrong, and you decide to just "try" a little
bread, pizza, cake, whatever, to see if you can tolerate it again.
You may even thing you're getting away with it for a while, making you
feel even more bold - until it hits you again. No, if you do get a
positive diagnosis for CD, just get into a gluten-free routine and
eventually it will become relatively commonplace for you, and won't be
all that big a deal. If you're married and your spouse is
understanding about which utensils she uses in cooking which diet
(assuming she doesn't go gluten free), and learns to read food labels
right along with you and is sensitive and supportive, you'll adjust
nicely with a little time.

Just remember: if it is CD, finding out now sure beats finding out
later when many of the possible "side effects" can also have kicked
in, perhaps the worst being non-Hodgkins lymphoma (a virtual death
sentence once it's finally diagnosed in the places CD patients usually
get it). Fortunately, if you go truly gluten free, the studies I've
read seem to indicate that the likelihood goes back down toward the
same likelihood as the general population. At you're age, it's likely
that you've caught this in time (again, assuming it really is CD), and
can live a nice, long, happy life. The cancer connection simply
serves as a great reminder to me that I don't want to get lazy in my
diet. I don't get easily noticeable symptoms at first, though I'm way
past the denial stage where I tried to go slowly back on
gluten-containing foods. For that reason, it's easy to get complacent
and slack off on vigilance since I'm not blessed with a more immediate
response to let me know right away that I messed up.

Again, don't panic. Just be sure your gastroenterologist is well
experienced in working with CD - and don't be afraid to ask questions
along those lines. It's YOUR body, no his/hers, and you pick the
best, most experienced person you can find.

Best wishes,

C.R.
(Been there, done that! And lived comfortably to tell about it.)
<<grin>>

don wiss

In the **** years celiac more often presents as constipation. Maybe you had
trouble drinking beer when you started drinking? Any ADD like symptoms when
a kid? Do you have smelly flatulence?
Don <www.donwiss.com> (e-mail link at home page bottom).

Don never had problems drinking beer but i do remember bouts of
explosive diahreah in my life 2 of them in my late 20s and when i was
born had colic that put me in intensive care im told for 14 days

thanks to everyone who replied for taking the time to reply at some
length and obviously great time you have put my mind to rest that i may
not have a problem that is as bad as im just assuming (i honestly
thought my days were numbered)

its good (if you get what i mean obviously none of this is good) to
hear that there are people who have had this and similar symptoms to
mine and are willing to share their experience

my sincerest thanks to you

regards

mike

janice

Don't give up. You will get your answers if you keep trying.

You sound classic celiac.

BTW: Your body can tolerate a lot of crap that you will not handle
when you are 30...409 and 50. It gets less tolerant and your illness
comes to light. Be glad you have caught it sooner than later.

christopher jahn

Certainly. I was diagnosed as an infant some 42 years ago, and
"went into remission". Which really means the worst symptoms
died down and my mother never followed up on it, having been
assured that I'd "outgrown" it.

And my symptoms for most of my life were mild, and attributed to
other things. It was only after I discovered the original
diagnosis and followed it up out of curiosity that I realized
that all my complaints fit with the diseases I had "outgrown",
that i had myself tested.

If not for that, I might never have been diagnosed.


--
}:-) Christopher Jahn
{:-( http://home.comcast.net/~xjahn/Main.html

Though it all looks different now, I know it's still the same...

prd

In alt.support.celiac message
news:1153674703.138312.167130@b28g2000cwb.googlegr oups.com by
mike.mcdermid@btinternet.com . . . :

Yes, My first symptoms appearred at 28.

Autoimmune diseases can be divided into two classes.
1. Early onset - 2 to Puberty
2. Late Onset - 25 to 60.

I doubt you have CD. Maybe just a food allergy.

christopher jahn

There is only one way to know.

--
}:-) Christopher Jahn
{:-( http://home.comcast.net/~xjahn/Main.html

It was such a lovely day I thought it a pity to get up.

prd

In alt.support.celiac message news:Xns980BC1708634Fxjahn@
216.196.97.136 by Christopher Jahn <xjahn@yahoo.com> . . . :


This should be corrected. In the case of type I diabetes and
celiac, individuals can begin experiencing symptoms at less than a year.


The reason I doubt it is that he decribes a very rapid onset,
which is typical in children, in adults onset appears to be much
slower. Of course if he had celiac and had completely obstained
from all triticaea, which is rather difficult in most societies if
one is not intentionally going gluten free, then there is a
possibility that he had what we call being 'glutened'.
The phenomena expressed more correctly is that many individual
did not know they were gluten intolerant and the body adjusted to
the disease and gluten load. Once the body is free of the load the
tolerance to gluten decreases, as T-cells remain and damage
persists. After 3 or 4 months when a person is at the peak of the
recovery process, being glutened can often have much more severe
consequences per mass of gluten than the person was experiencing
with chronic exposure.
We know what the minimum range of gluten is per week, but the
upper range for some individuals is not clear, 10 mg/week?
Somewhere between .1 and 10 mg/week would need to be maintained for
several months to get the 'slingshot' gluten reaction. That's kind
of hard to obtain without doing some serious research (or going on
a whole foods diet).