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Hi, I would like to know if you have my kind of gluten reactions and have
been officially diagnosed with celiac disease, with the blood tests or
biopsy.
When I first had food reactions, in 2003, I'd feel a groggy stupor coming
on 1-2 hours after eating. It would last about 4 days, gradually fading
away. I'd get tense, uptight, very irritable, angry, feel paranoid; and
the day after I'd have joint pains.
In 2005 the reactions I had were different and milder. I'd get woozy-sick
within about 4-5 hours after eating the food, sometimes I'd start feeling
kind of bad about half an hour after eating. Mentally out of it,
physically wiped out; usually I have to stay home the day after one of
these food experiences. And I still get some back pain. In 2005 I had
a lot of other symptoms, like being somewhat itchy over my whole body and
needing to pee often, and sometimes, feeling a bit nauseated, though I
never threw up. These reactions were to not to gluten - I'm extremely
careful to never eat gluten - but I have a strong impression that my
reactions to gluten feel the same as my reactions to other foods.
Reason I ask, is that the more typical reaction to gluten among celiacs
seems to be, like, spending days on the loo, as people have said, with
diarrhea.
I've had diarrhea a few times - once possibly as a gluten reaction - in
2003 I was still eating spelt flour for a while before I realized I was
gluten intolerant, and I got diarrhea the day following eating spelt, it
may have been a reaction to the gluten in it. In 2005 I got diarrhea
after one of my food challenges with legumes, a bowlful of beans did it
to me. And I got diarrhea after eating some canned salmon, fish being
one of my intolerances. But I've never spent days with diarrhea after a
food challenge.
I've wondered if I might have some other kind of gluten intolerance
besides celiac disease. I didn't get officially diagnosed with blood
tests or a biopsy, because I found out about my food intolerances after
doing an elimination diet, and doing a 1-month or 2-month gluten
challenge would have made me terribly sick as well as messing me over
psychologically. I got Enterolab's testing and I had very high levels
of the TtG and gliadin IgA antibodies. (Please don't send me all sorts
of opinions about Enterolab) So I have tentatively concluded I probably
do have celiac disease.
One reason I'm wondering - and this is a scary thing - I have an
intolerance to something I'm *sure* I wasn't eating while I was eating
gluten. That's birch/beech. Yes, the Pure Encapsulations D-mannose made
from beech/birch, that I was hoping would help me prevent bladder
infections, makes me sick. I'd been eating xylitol made from beech/birch
for years, so I was so sure that Pure Encaps D-mannose would be OK, that
I didn't do an elimination diet for birch and beech before trying the
D-mannose. I felt slightly sick after taking it, but I thought I was
coming down with a bladder infection, since I'd just gotten over one.
So I took larger doses of the D-mannose, since that's supposed to cure
bladder infections sometimes, and it was the weekend, so it was hard to
see a doctor. I got sicker. On Monday I went to the doctor and gave a
urine sample, the following day they called me and said there wasn't any
bladder infection. So I realized right away that the D-mannose probably
was making me sick. I did a week-long birch/beech elimination, by
stopping eating xylitol and D-mannose. Then I tried a tablespoon of the
birch-source xylitol, and to my surprise I got quite sick. Then when I'd
recovered from that I tried 1/2 tsp. of D-mannose and I've been sick for
three days from that.
I'd been eating the birch-source xylitol for quite a while before I found
out, in 2005, that I had intolerances to almost all the foods I'd been
eating since quitting gluten. There's no pattern to the foods I get sick
from, except that foods I never or almost never ate, are safe, and almost
all of foods I ate often make me sick. (don't email me telling me it's
non-organic food or whatever, because I know it isn't).
I've read that going around eating foods you're intolerant to can
perpetuate the intestinal damage from gluten - thus causing me to develop
new food reactions, perhaps. I don't know how much evidence there is for
this. I found out in 2005 that a lot of the foods I'd been eating had
been causing me various kinds of inflammation for me - and very likely
they would have been irritating my intestines too, making me develop new
food intolerances.
I haven't found any food reactions that have developed since 2005,
luckily! So maybe I'm done with developing new food intolerances. Or
maybe not. It is a scary thing, because there are only a few foods I can
eat without getting sick, and I have to be careful of what I eat, to
avoid nutrient deficiencies. I keep track of my nutrient intake with a
computer program. Already, I have to supplement vitamin D. But very
many vitamin supplements will just make me sick. In 2005 almost all the
supplement pills I'd been taking made me sick for days after I did
challenges with them. So just taking a supplement is not an option. I
need to get my nutrients from my diet. So I'm worried about getting
backed into a corner with my diet, of developing even more food
intolerances so that I can't have a nutritionally adequate diet.
I know that very little is known about food intolerance, even gluten
intolerance. So it seems possible that I might have a lot of the
anti-gliadin and anti-TtG antibodies without having celiac disease - but
rather some other kind of virulent food intolerance problem. Generally
I've been getting healthier after quitting the gluten and these other
foods - so things are tending up - but I'm not out of the woods yet!
Laura
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