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From:
sandybill <[log in to unmask]>
Date:
Thu, 3 Jan 2002 11:52:52 -0800
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<<Disclaimer: Verify this information before applying it to your situation.>>

I began this by writing the following:

After eight years of this GF diet, and normal gluten reactions whenever I
get a slight touch of gluten, suddenly I do not appear to be reacting to
wheat. When "She Who Must Be Obeyed" was gone for a week recently I bought
another box of Van's Waffles. Ate one one morning, and two the next. She
she got home she looked in the freezer and it brought out her alternate
personality, the dreaded Darth. "Why are you suddenly buying whole wheat
waffles"? she asked in high dudgeon.

It seems I had eaten three whole wheat waffles with no reaction whatsoever.
Then three days ago I mistakenly took a bite (half the cookie :) of her
wheat made cookie before Darth appeared and stopped me. No reaction
whatsoever, even though I did take four papaya pills immediately after I
would have expected something. I know I did react strongly to any hint of
wheat at least a year ago, when I had my last major accident, that I knew
was wheat.

What I want to know is: Have any of you gone from normal celiac reactions
to wheat to no reactions within a year?

For some reason most of those who replied seemed to get the idea that I
said I was going to start eating gluten again. I did not say that. That was
an unwarranted assumption. I'm careless, not stupid. No way am I going to
go back to eating wheat again. No way. Not gonna happen. It's gotten too
easy to avoid it. So please do not write and chastise me like a child any
more :)

I do wish though that I could eat dairy again :) But my Okla family used to
tell to wish in one hand and spit in the other and see which hand got full
the quickest :)

Several people replied that after a long period of careful GF eating they
did get to the point where one or two episodes did not bring on any
reaction. Several mentioned that when you are "clean" long enough you no
longer have any antibodies in your system so you don't react to one or two
encounters of the gluten kind. This seems to make a lot of sense to me and
that's the one I'm gonna believe till I have something better to go with.

But they all said that if  they continued to eat gluten, in less than a
week they would begin to react again, and some said worse than before. I
believe this. -vance

Following are some of the interesting replies: "I've had a similar
thing, but that dosen't mean you can eat wheat. What happens is that you
have not built up allergens and were able to sneak in some wheat. BUT,
if you continue, the allergens will come back [usually within four days
of daily consumption] and you will be back to groumd[sic] zero again."

"That is interesting. I havent tried eating wheat, but I spoke with a friend
recently that claimed that he was off wheat for several years and now seems
to be doing ok with small amounts of it. I haven't tried it since I don't
want to deal with the results if it doesnt work."

"I'm definitely no expert in the subject just having been GF around 16
months now. I was diagnosed as gluten intolerant and never had a biopsy. My
symptoms all cleared up with a GF diet, but I wasn't convinced until I ate
some wheat-dipped french fries and bloated and constipated etc. Anyway,
I've noticed recently that I'm not reacting like that anymore to gluten.
I'll feel a little off if I accidently ingest something I shouldn't have,
but I'm not getting the painful gas and bloating so much. However, I will
get a cold, on cue, about 2-3 days later, so I'm fairly certain I should
still stay away from gluten. ;)"

"I have a friend who was diagnosed 20 years ago. Three
years ago a new doctor said that it was a bad
diagnosis and he began to eat wheat again. He said it
took him 2 years to really screw up his insides again
where he is reacting all the time. Thus, the moral of
the story is that just because you are not reacting,
you may still be doing damage, and the clock is
ticking (soon you will be reacting again)."

"I haven't tried to eat wheat, but I found your comments interesting. I
was diagnosed a year and three months ago. Before that I have seemed to
have this problem on and off for years. I first became sick when I was
16, and had severe diahrea for 9 months. It then went away and returned
when I was 25. I again was sick for about 6 months. It came back when I
was 38, and my doctor but me on antibiotics. I was on the antibiotics
for 3 years. I don't know if celiac can come and go like that, but
during those years I always ate wheat. Most of the time I was ok. I am
very interested in the responses you get."

"Hi, I have a 23 month old son who is celiac. He has been gluten and casein
free since Sept. 2000. When he had been GF for a year, I challenged him
with some Ritz crackers, and he ate the whole roll. Absolutely no reaction,
and this is a child who would scream at the top of his lungs and roll in
the floor with intestinal cramps. So we went off the diet, using Creon
prescription enzymes, and he did not have any diarhea or stomach cramps. We
did this for like 3 weeks, then realized that he was having petit mal
seizures, staring off into space for about a minute, then just snapping
back out of it. We called the alergist, and he said to get back on the
diet, gave me a tongue lashing for even taking him off of the diet, and
said that these seizures are common in this type of situation. Petit Mal
seizures will lead to Grand Mal. We got right back on the diet, and haven't
seen another seizure since.

He has described it to me like this:

You are a big pot, and all of your intolerances are simering inside of it.
You can add a certain amount, and keep it in the pot, but if you keep
adding, your pot will overflow and you will have reactions. I think if you
keep challenging your diet, it will catch up with you and you will have to
start over again healing your gut. I have just recently found out that I am
also Celiac, I have had horrible diarhea and intestinal cramps every day
for the past 6 years (ignorant doctors couldn't figure it out). Since going
GF a month ago, I'm feeling great and am in no hurry to challenge the diet
and be put back in that horribly unhealthy state of nutrition again."

[Ed. note] The last two I'm including because I thought they were
noteworthy, but that does not mean I agree with or espouse this approach,
so do not chide me. And I also think it's unnecessary to say anything to
them either, unless someone has an uncontrollable urge to vilify or control
others :)

"The first year I went GF, I had the worst reaction ever, when I accidentaly
ate gluten. I was then oversensitive to gluten. Last year I cheated and
wasn't sick at all.

Since then, I must confess that I do cheat once in a while (about every two
months) with no reaction at all.

Is it very dangerous to do so? Many listmember will tell you it is
suicidal, but it makes me feel good and helps me to stay on the diet the
rest of the time."

"I've got the same problem. I do not stick to the diet but out of the blue
I will get really sick and lose a lot of weight and not be able to keep
anything in. It happens maybe two to three times per year. I was diagnosed
by biopsy 10 years ago as celiac. I have no explanations, but would like
one also."

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