<<Disclaimer: Verify this information before applying it to your situation.>>
ORIGINAL QUESTION
One of my nephews (16 yrs) has just been diagnosed with Eosinophilic
Esophagitis while he was having an EGD done to do biopsies for CD. My
understanding of the disease is that it is inflammation of the esophagus
(Esophagitis) and that the inflammation is due to an infiltration of
eosinophils, a type of white blood cell (Eosinophilic).
Does anyone know of any association between CD and Eosinophilic =
Esophagitis?
Do any of you, or your children, have Eosinophilic Esophagitis? If so,
please share any experiences or thoughts you think might be useful to my
sister. I'll summarize.
SOURCES FOR SUMMARY:
I received several replies from the list. Two members have an Eosinophilic
Gastrointestinal Disease (EGID), either Eosinophilic Esophagitis (EE) or
Eosinophilic Gastroenteritis (EG), in their families. Both EE and EG
involve inflammation due to infiltration of eosinophils, the former is in
the upper GI, the latter is in the lower GI. I provide excerpts from these
list members at the end of this message.
Two members pointed to an issue of Living Without that had an article on a
mother caring for a child with EGID. I have the excerpt about the article
below as well.
I also joined a yahoo group dedicated to adults who care for/know children
with EGID. From that list I heard from a single adult who had one child
with Eos and another child whose blood work tested positive for celiac (the
second child will soon be biopsied for CD). NOTE: I want to say that
joining this group was a real eye-opener for me. I thought being GF and
dairy-free was a struggle. The agony these parents endure watching their
children recover from EGID is hard to imagine. Many children have to
totally stop ingesting food-by-mouth for months or years at a time in order
to recover from EGID. And, that is just the beginning of their struggles.
It made me grateful that I 'only' have CD.
Finally, my sister has been gathering info on Eos, and I received some info
from her.
INFORMATION SUPPORTING CELIAC-EGID CONNECTION
From moderator of yahoo group devoted to EGID family members
http://groups.yahoo.com/group/eosinophilgastro
"Yes, there does seem to be some link between CD and EGID (Eosinophilic
Gastrointestinal Disease) At least in some respect they are both thought to
be allergic conditions...."
My sister forwarded me an FAQ answer that lists the diseases associated with
EGID. Celiac disease is listed among the associated diseases:
http://www.cincinnatichildrens.org/svc/prog/eosinophilic/faq/six.htm
I plan to be tested for EGID the next time I have an opportunity to get an
EGD - probably in the next year or so.
LIVING WITHOUT ARTICLE
"Living Without magazine featured an article on Eosinophilic gastroenteritis
(EG) in the Winter 2002 issue. EG occurs when the cells infiltrate areas of
the entire digestive tract. Eosinophilic infiltration of the esophagus is
called Eosinophilic Esophagitis. While the article focuses on EG, the story
might offer some information that is appropriate to your situation. It is
written by the mother of a child with EG and provides a mother's perspective
that is both moving and informative.
www.LivingWithout.com "
LINKS
I got a number of links:
Yahoo Groups related to EGID - (To read the messages, you need to register
with Yahoo-Groups and join each group individually) The first two groups
have a set of interesting links associated with them.
For Adults and Teens with EGID:
http://groups.yahoo.com/group/Eosinophilgastro-Adult
For Parents of Children with EGID:
http://groups.yahoo.com/group/eosinophilgastro
For individuals living in Pacific NW who also have EGID:
http://health.groups.yahoo.com/group/PACNWEOS
Cincinnati Children's Hospital is one of the two premiere research centers
on EGID in the US. (The other is in Boston.) This link is to the portion
of the Cincinnati Children's website that is
devoted to Eosinophilic diseases... This is just a start, and there are
many
pages with great info... While you are there, be sure and fill in the
survey...
http://www.cincinnatichildrens.org/svc/prog/eosinophilic/default.htm
American Partnership For Eosinophilic Disorders (APFED) is a non-profit
organization dedicated to the patients and their families coping with
Eosinophilic gastrointestinal disorders. The site has many pages, as well
as links to other sites... Be sure to read
What is EE...
http://www.apfed.org/
APFED has hosted a conference the last two years.. 2002 in Cincinnati, Ohio
and 2003 in Boston, Mass.... Memberships are encouraged...
EMedicine article..about Eosinophilic Gastroenteritis.
http://www.emedicine.com/med/topic688.htm
MESSAGES FROM LIST-MEMBERS WITH BOTH CD AND EGID IN THEIR FAMILIES
"My seventeen year old son was just diagnosed with Eosinophilic Esophagitis.
His father, grandfather, one aunt and two sisters all are Celiacs. He is
also one who looks like a celiac and has repeatedly passed the blood tests.
We are now working with a gastroenterologist and hope to have some more
answers. He also has been referred for allergy testing. I look forward to
your summary. I will share it with our gastro guy. He thought it would be
interesting if there was a link there."
"I have Eosinophilic Gastroenteritis (EG). It's a similar disorder which is
more focused in the lower gut rather than the upper. I received great
relief from getting food allergy tested by a competent naturopath and giving
up all allergenic foods. Milk was one of my big offenders, which I didn't
use for three years. However, cutting out dairy meant less healthy gut
flora and mineral deficiencies. So I developed candidiasis and had trouble
sleeping at night from calcium deficiency. I've recently found that I can
tolerate kefired goat's milk without causing my EG to flare up. Kefir has
done wonders for controlling candida, gas, constipation, etc. I sleep
better at night, too. I don't know, but kefir milk may help your nephew if
he can't have regular milk.
Kefir is a delicious cultured milk beverage, sort of like yogurt only much
better. Even though I'm allergic to milk and lactose intolerant, I thrive
on kefir made with goat's or cow's milk with no problems. Kefir cured my
chronic constipation problem and does a great job controlling bloating &
gas. Ready made kefir can be purchased at health food stores and some
grocery stores. Kefir can be made at home two different ways:
(1) You can buy powdered Yogourmet kefir starter at the health food store
(six packets for less than $5) & follow the directions. It's very simple &
requires no special equipment. This is not the real original kefir, but it
makes a very nice cultured milk product with many robotic healthful
benefits. It's especially good made from goat milk.
>
> -OR-
>
(2) You can get real kefir grains free from anyone you find willing to
share them with you. They look like little cauliflowers and grow in milk.
So once you start making kefir with real kefir grains, you'll soon have
enough to share with others. See these websites:
> http://users.chariot.net.au/~dna/kefirpage.html#what's-kefir
> http://health.groups.yahoo.com/group/Kefir_making/
> http://66.46.11.99/clarkson/Show/Clarkson/kefir/default.asp "
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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