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From:
Mary Thorpe <[log in to unmask]>
Reply To:
Mary Thorpe <[log in to unmask]>
Date:
Wed, 12 Jun 2002 22:21:25 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks to everyone who responded to my informal poll.  The replies seem to
have stopped coming in, so here is the summary, with explanations below.

There were 109 respondents in all (one of whom also reported on her son).

40: "NO, not LI"

56: "Yes, L I"

         21: resolved on gf diet
         10: partially resolved
         16: hasn't resolved on gf diet
         5: couldn't tell
         4: didn't say

6: "L I after GF"

8: Other


Most of the 39 counted as "No" responders simply, as requested, replied
with that in the subject line.  As several respondents pointed out, we have
to trust that people can differentiate between lactose and casein
intolerance.  So take these numbers with that in mind. (And see the "Other"
category below, where some did make a distinction).

There were several categories for the 56 counted as "yes" responders, who
were asked to write notes about whether the L I resolved on the gf diet.

         For 21, the LI resolved, over varying lengths of time- from 4
months up to 4 years!

         For 10, the LI has partially resolved: can tolerate some, but not
a lot, of dairy.

         For 16 the LI has not resolved: it may be too early for some, but
some had continuing   problems as long as 9 years after going gf

         5 "couldn't tell" because too early to tell (newly diagnosed), or
still avoiding lactose

         4 didn't write notes, the "didn't say" category

A couple of new categories cropped up:

LI after gf: these folks stated that they were not lactose intolerant
before going gf, but developed it later, some much later (half didn't
categorize themselves, but half had responded as "NO" but were put here
instead.  Perhaps they could all be included in the "NO" category since
they weren't lactose intolerant apparently as a result of celiac diseaese).

Note: some wondered how you could tell if you were lactose intolerant
before going gf.  Good question.  Speaking for myself, and another
respondent, when we were first going gf, lactose caused a problem (or a
worse problem) after a gluten slip but not if we stayed gf.  I had tried
eliminating dairy before going gf, and it didn't help, because the primary
problem was gluten. When I eliminated gluten, my digestive symptoms
ceased.  I could tolerate dairy, except if I had dairy in conjunction with
gluten.  I'd get an immediate adverse reaction after eating dairy so
it was pretty clear, while the gluten problems were not so immediate.  So
I'd call what I had transient lactose intolerance.  Hope that makes sense
to you all.

Other: Those who said they had casein intolerance or allergy, or were
trying to sort it out, were put here- most had responded as "yes" and some
as "no" but I didn't count them under those categories because it wasn't
possible for me to tell whether they had lactose intolerance or not.

So, the results were interesting, weren't they?  Of those that responded
clearly "yes" or "no" (and even if you include as "No" those that developed
LI later in life), more than half reported lactose intolerance problems ,
and more than 2/3 of those had improvement on the gf diet.  I have a better
feel for the issue, and hope you do, too.  A good scientific study of this
is called for, don't you think?  Thanks again-

Mary Thorpe

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