CELIAC Archives

Celiac/Coeliac Wheat/Gluten-Free List

CELIAC@LISTSERV.ICORS.ORG

Options: Use Forum View

Use Monospaced Font
Show Text Part by Default
Show All Mail Headers

Message: [<< First] [< Prev] [Next >] [Last >>]
Topic: [<< First] [< Prev] [Next >] [Last >>]
Author: [<< First] [< Prev] [Next >] [Last >>]

Print Reply
Subject:
From:
Eleanor Muise <[log in to unmask]>
Reply To:
Eleanor Muise <[log in to unmask]>
Date:
Wed, 28 Sep 2005 00:58:19 -0400
Content-Type:
text/plain
Parts/Attachments:
text/plain (72 lines)
<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks to the many folks who responded.
Here are the important replies I felt would be significant to the group:

Always important to evaluate your meds, over the counter and prescription.
Call product helpline numbers at the store, don't just rely on labels or
assumptions from past purchases/phone calls/listserves. (My personal
strategy has been to bring my cell phone and call everybody from the store -
so weekday daytime and I stick to one or two new products per trip.)
Eating out is hazardous no matter how "good" you are at explaining your
needs, gluten is all over the place in nearly every restaurant. (Major
bummer - so how do 20 somethings go out with friends?)
Antibodies begin to spike immediately after gluten reaches the small
intestine, the peak at two weeks and remain for six weeks. Repeated exposure
would cause these high levels to gradually increase over time and take
longer to subside.
Because lotions and shampoos can get on your hands and in your hair they can
find their way into your mouth via your hands - so if you plan to itch your
face or run your hands through your hair (or incidentally bit your nails)
you could accidentally be ingesting gluten, so either stop those actions or
purchase gf skin and hair products too.
Take obvious precautions: gf station in kitchen, separate utensils and work
surfaces, separate pots and pans, separate storage containers for food,
separate food containers for food, separate kitchen towels and sponges.
Be aware of the possibility of cross contamination of gf labeled (and
unlabeled but stated or confirmed) food products that could come in contact
with lines or shared packaging facilities of wheat derived or containing
products. (Now this I didn't give considerable thought before and will
certainly pay more attention to and look into with each new food option.)
If you aren't confident in your doc's assessment seek out one more
knowledgeable or call one of the many celiac centers for interpretation of
your results.
If all else fails try an elimination diet. (Major props to those of you able
to sustain yourselves it sounds really really really difficult and more
frustrating than ever, hopefully those of you who mentioned this have
succeeded in arriving at health!)

Many people have responded that they too have not responded well (with
improved symptomology or blood work) to the gf diet. I assume that some of
those respondents like me are very very strict and careful about the gf
lifestyle (because it is a lifestyle change) and haven't been feeling better
and that there are others who are accidentally ingesting gluten from
misinformation or lack of self education about this stuff. A handful of
people stated that 3 months isn't enough time to learn how to do this is
difficult for me to agree with although I think I get their point, there
certainly is a learning curve to this, but I'm a graduate student in
medicine and I have previously studied nutrition as a graduate student so I
have had a leg up, and thankfully this isn't rocket science. I'm confident
that I'm not "missing anything" and I have resolved that the mysterious
gluten must be coming from a cross contamination issue with my confirmed
gluten-free products and will begin investigating them all over again.

I know many people were trying to reassure me that health would come, any
many more said that they had similar experiences - the underlying factor
here being that we have all experienced frustration with this - and that is
a good message to share with each other in support through this tough stuff.
So I used my background knowledge of all of this and went hunting after a
respondent stated that there could be other causes of high tTG levels. I
came up with some interesting results that I'll just summarize because its
all available on pubmed.gov <http://pubmed.gov>. Although other gi diseases
can cause elevated tTG it is unlikely that any could knock it up to above
100 (normal being under 20 - and my latest reading was at 115).

So in summary, check your stuff and make sure you're on top of anything that
you ingest and try to be patient as your body can take a long time to heal.

Thanks to all.
Eleanor

*Please provide references to back up claims of a product being GF or not GF*

ATOM RSS1 RSS2