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Hi all,
Here is a summary of responses regarding whether or not any of you have
ever had periods of remission (before dx and going gluten free).
Thanks for your feedback!
===================
Yes,, it would happen to me. There were definitely times I felt a little
better. The problem was that it always returned, and over time became
continually worse.I think you just get used to feeling so bad, and even
when you think you're in remission you're actually quite unwell.
That's hindsight talking.
Dx'd at 40,, gluten free rof two years and would never go back. Not for
anything.
====================
Yes, it is not only possible, but frequent.
I would suggest you to go to this other excellent site:
http://forums.delphi.com/celiac/start/ Very caring and knowledgeable
people to answer your questions. Good luck,
====================
I was born with Celiac and had to eat cottage cheese, liver and bananas for
the first 2 1/2 years of my life. My mother was told I would 'out grow'
it. I guess I did for awhile because I ate gluten from then on without a
problem until I was 45. I became so sick I was hospitalized. It wasn't
until they did a family history and I revealed I had 'once had' celiac did
they understand what was happening. Now, at 51 I can't get anywhere near
gluten. I get sick with a trace and violently sick with any accident of
more than a trace. Go figure!!!! Everyone is different but we are all
alike!
====================
Definitely YES
====================
Yep, I only had problems after eating at the Olive Garden or after having
oatmeal for breakfast. Rest of the time I felt fine.
====================
Yes. For 20 years until I finally got a smart Dr. who did the biopsy.
====================
Yes, I did, but the symptoms always came back and sometimes they were
worse. I am on this diet 28 yrs. I don't get any gluten attacks unless I
unknowingly ingest it.
====================
I did. I've had good times & bad times off & on for years.
====================
S* once, for a period of time, I felt wonderful...it was when I was on Dr
Atkins diet, to lose weight. Of course, knowing what I know now, I realize
that was about the only time in my life before DX that I was gluten-free.
====================
I am not sure if this is an answer to your question or not, for one thing I
Am not sure what DX is, and I gather you can take gluten.
My case is DH of several years standing, and at least two if not three
fairly severe recurrences in the past year or more. None of the
recurrences have been as severe as the first one, but one recently did
threaten to be. I am on a little known drug called LEDERKYN, a sulpha
derivative that is only issued on a "named patient basis only", and
requires frequent blood tests.
It was originally used for malaria, subsequently it was found to be
useful for DH (dermatitis herpeteformes), and latterly for ecoli
disease. It literally takes out the bacteria from the blood stream
indiscriminately, but does lower your red cell count if taken over too
long a period. I started with three a day, an excess of one over the
recommended two, and now have it down to one every three days.
Hopefully I will get this out to every four days, possibly more, but all
on as gradual basis. I understand that DH does recur even if one is on
a completely gluten free diet, which I have been on for the past
eighteen months or more. I hope this is of some help.
======================
Not me. The only time I had any relief from the constant diarrhea was when
I went on a self-imposed liquid diet for a weekend. As soon as I had the
piece of toast that usually follows a liquid diet the diarrhea returned.
======================
This did happen to me. At first, I lost 15 lbs, then regained 7 lbs, and
didn't feel quite as badly, in spite of eating gluten.
======================
Before being diagnosed I was like a bi-polar, the doctors at the Vetrans
Hospital here in Florida put me on Lithiam. Not a thing for me but I gained
weight and lost some hair.
I would be okay and then I'd lose it and being in bed for days, I more or
less was in bed for about 5 years. There were periods that I almost felt
right. I would go without eating for long periods of time because it would
hurt when I did eat.
Not until I gave up the wheat did I start to get better and then denial came
in and I got bad again and then made myself find out what was going on and
that's when 'Celiac' was found.
For years my son who was diagnosed with wheat, soy, peanuts had been on his
diet and we found that rye was a problem also, and when we started eating
oats more that once a week that began to be a problem and then we started
taking barley and malt out of both of our diets and we were more behaved
towards others.
So the cycle does go back and forth. My second child now it weaving back
and forth with this. He has not gotten diagnosed and I don't want to force
the diet on him, I know it will change his ODD behavior. As time goes on
with him it's more time not being well/behaved.
I liken it to chemical hyper-sensitivity, which is when your body takes and
takes all that bad stuff (chemicals) or gluten and than it reaches its
saturation point and no more can be processed through the body and you start
having.... what ever may be your symptoms. I get spacey as if I'm drunk and
then my head starts aching so bad I'm unable to deal and cope with daily
stress and If made to I get extreamly ugly in words and at one time actions.
It takes time for your body to clear out the bad stuff and then it's almost
like starting over and the process continues till the change comes.
========================
HI, I did not even know I had celiac until I was 34, I had vague symptoms of
tiredness, fever, and vitamin deficiencies for 14 years before that. I only
went to the doctor for heart burn symptoms that was steadily getting worse
after taking ibuprofen for an injury. I never had anyother symptoms of Gi
distress. I was "severely inflammed" in the esophagus, stomach and duodenum
which my doc found during a EGD. He called it gluten induced enteropathy,
which just means every thing slowed down from the inflammation and backed
up. I did not have any other GI problem. NOW that I am GF I can not have the
smallest bit of contamination or I get extremely ILL with all the typical
symptoms. ( I also have palpitations and restlessness, not typical).
So I guess you could say I was basically symptom free from the typical
symptoms until after I was DX. So my answere is yes it is possible.
=========================
Lol wish it was, certainly isn't for me if I consume any gluten I am running
for the loo
=======================
I first had symptons in 1970 in 1971 a year later a new doctor put me on
bile salts.He gave me this because I had gullblader attacks and pain at my
gullblader.the pills [decolin] controlled all of my symptons and I
continued to eat gluten without any problems. I used the bile salts only
when I had pain which slowley deminshed to the point that I quit using them.
For several years I used the bile salts only in the spring & fall when the
weather changed. In dec 89 I found an article on gluten intolorance and
went on a gluten free diet.
For me I can ingest gluten part of the time. some times for months at a
time.I still use bile salts if I eat gluten without knowing it is
present in the food .When the fire starts in the stumick I take a pill.
I also take it as a proflactic if I know I will be eating where wheat
may be served in the food.
I'm not advocating you follow my way I should add that my symptons are
constipation no vomiting or loose stools
======================
I don't know what happened to me, for sure, as it has been coming on slowly
my whole life. I know at one point my vision actually got better, so
something changed at that time. But I know of other people who do seem to
come and go-it is a problem with the immune system, and that certainly
changes throughout the life cycle, so it makes sense to me that it could
come and go.
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