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In sum: It varies.
answers I got -
17 yrs gf, ~ one accident/year, very sick from traces
3+ yrs gf, reacting to traces
3+ yrs gf, reacting to traces
6 yrs gf, reaction went away
38 yrs gf, still having reactions, having gluten accidents
6 yrs gf, still reacting
6 yrs gf, still reacting to traces
1 yr gf, little reaction to gluten now
3 yrs gf, reaction got better, 2/3 accidents/yr
1 yr gf, less reaction now
3.5 yr gf, still very sensitive
6 yr gf, can eat a slice of bread once/year, no reaction
7 yr gf, not reacting at all
18 yr gf, still very sensitive
10 yr gf, very sick from major amounts of gluten, every few years
Is there anything
the people who keep on reacting to trace amounts of gluten intensely for
decades, could do to change this?
Almost everybody had gluten accidents at least once or twice a year -
except for people who, like me, are sensitive to a huge number of foods
besides gluten and probably, like me, make all our food from scratch and
never eat out - I eat first before going to a restaurant and just drink
water there. And you can ask whether being *that* careful - rather
than careful enough to have gluten accidents once/twice a year - offers
the hope of eventually, no longer getting really sick if one does have a gluten
accident. There wasn't any way to guess at the answer to this from the
responses I got - I just know, in general, it helps the body to "forget"
an immune reaction if you avoid the substance.
It would really be nice to eventually get less hyper-sensitive - it would make
a gluten-free diet a lot easier, if you don't have to worry about tiny
amounts in cross-contamination, etc. It would potentially help a lot of
people.
This happens with intolerances to other foods besides gluten, I've heard,
and those food intolerances are supposed to go away in a few years or so -
maybe 10 years ... but exposing oneself to traces of the food may keep the
reaction "alive". I talked with
someone who said she didn't eat *any* corn for 10 years or so - her
reaction had disappeared after 10 years. The various email lists &
forums are biased towards people who are still having gluten reactions,
I'm sure - it's so much easier if you aren't reacting to tiny amounts, and
there would be less reason to subscribe to a gluten-free diet list.
I didn't see a pattern of some kinds of gluten reactions fading away
after years and others not. Some people get diarrhea and gi upset, some
people get woozy and itchy - for some people with diarrhea, the reaction
faded away, for some it hasn't.
One thing I am *not* saying is that it would be OK to go back to eating
gluten again, even if one's reaction fades away. Because it will likely
start up again, and it's a very destructive autoimmune reaction. I've
been through hell with gluten, personally. People seemed concerned
that I might want to just start eating gluten again.
Some said their reactions have continued despite being careful:
>i've GF since 1989, 17 yrs now, i've always had to be very careful.
>so last friday at the monthly first friday at the art galleries i
>picked up something bad off one of the vegi trays, i think somebody
>put their cackers on the vegis while they poured wine,
> so this was very small amount as i looked the vegis over before i
>got anything. its wednesday and i'm into day 3 of major gut blowout,
>i fell great in the mornings but i'm home by noon getting that
>wonderful quality toilet time.
>even being really careful i get hit about once a yr that shuts me
>down for 3 to 5 days.
Some like Heidi said, they've stopped reacting much.
>I don't really get so much reaction at this point.
>I also read something similar, that in studies, small amounts of gluten
>KEEP people from healing, but once they are healed, teeny small amounts
>don't seem to cause damage. So there is that one period of
>hypersensitivity you have to go through, probably.
That's my impression also; when I read doctors, research talking about
amounts of gluten that cause damage, it seems to be more than a trace
amount.
> I've also found though, that taking Pascalite (bentonite) while eating
>out will stop reactions of many kinds. I still react to casein, and the
>Pascalite
>stops the reaction. I don't know why: I heard about it on this list and
>tried it and it works. It's not something I trust for large amounts, but
>for the "cross contamination" issue, it's wonderful.
>I get dermatitis herpitiformis spots, and migraines sometimes.
>And sometimes nausea, like morning sickness, and a kind
>of brain-fog. I usually also end up yelling at someone the
>next day, about something/anything.
>But the first reaction I get is just feeling really COLD.
CK writes:
>I would have to agree that this is true for us here. Especially with my
>son
>who was the "most" sick of the 3 of us diagnosed celiac the first
>year/two
>years were the worst for gluten accident responses. Now at almost 6
>years
>gluten free we find that the discomfort is minimal if per chance we eat
>gluten. We are all very diligent about eating gluten free.
>For example my son at age 11 (now 17) ate a small amount of gluten
>(Chinese
>food) on a school trip after 7 months of being gluten free and ended up
>losing 20 pounds in 2 weeks (diarrhea) and was very ill for months
>afterwards. By contrast, last Thursday he ate wheat Vietnamese noodles by
>mistake (thought they were his usual rice) while out with friends and had
>no noticeable reaction at all.
Roxie says:
>It took me about 7 years to get to the point where I don't react at all.
>It is wonderful, but I still try to be extremely careful as I figure it
>could still be damaging my intestine. Wish they knew for sure.
A lot of people said their reactions have changed in a few years, though
not entirely gone away:
>when i first went gf and would ingest gluten, exactly one and half hours
>later i would have diarrhea and nausea, then the next day muscle and joint
>aches would begin. now, a year and a half after going gf, if i eat gluten,
>no stomach trouble. i do still get the muscle and joint aches, but usually
>not until 2 days later. those have not lessened in pain, they just show up
>a bit later.
I know for me, my reactions have seemed to get less severe over time. I
don't mean gluten reactions, because I've been almost completely
gluten-free. But I have reactions to avast number of other foods. Like
apples - I have an apple intolerance too. I ate an apple after 2 years of
nothing appley at all. I got quite sick for about 4 days, but the
reaction was less psychological. Though I did get very angry at
someone from my past and wanted to yell at them. It seemed like my food
reactions had many different elements, and some parts were fading away and
some parts were still there ... Maybe eventually it will all fade away,
for gluten as well as these other foods ...
and of course there are those lucky souls who don't react at all, or
didn't go through a time of being hypersensitive to gluten after starting
a gf diet ...
Laura
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