<<Disclaimer: Verify this information before applying it to your situation.>>
Recently I requested information from those on this list that suffer
from celiac disease and Crohn's disease. There were not as many
responses as I had thought there would be, but some very good
information came in. I will share some of it with you here.
.1........... My 16 yr old Celiac daughter was just diagnosed with
Ulcerative Colitis 3 weeks ago. It is the same as Crohn's disease except
for two things: Crohn's affects the entire alimentary canal from
esophagus to rectum and the inflamation and ulceration can go through
the inner and outer walls of the affected area. Ulcerative Colitis
affects only the inner lining of the large intestine. It is the same
otherwise.
There is a web site for the Crohn's & Colitis Foundation of America that
is very helpful. Here is the link: CCFA:Crohn's & Colitis Foundation of
America
.2......I have written a lot on both subjects since I am Celiac and my
husband has Crohn's. PLEASE have her order and read BREAKING THE
VICIOUS CYCLE . . . it is a diet for both diseases and my husband and I,
and many others, have PROVEN that it works for both. He's been on it
for a year and is off all his Crohn's meds and doing great!!! I am
working with Crohn's patients across the US and have learned that
doctors have no idea what role foods play in regard to "gut" problems,
so tell her not to despair when they can't answer her questions about
foods. Their job, as we know too well, is to dispense medication and/or
do surgery.
I'm sending you my files on the SCDiet. There is a lot of info here,
and some is repititious. Please encourage her to order the book, and
study it, as it will address both her diseases. I don't believe there
isn't another book that is as complete. Tell her to immediately avoid
corn, rice, potato, and sugar. These starches will play havoc with her
digestive system and give her diarrhea and cramping. If she can read
the "SCD Diarrhea Diet" article and have someone make the soup for her
while in the hospital, she should get relief very quickly. Encourage
her to not have any surgeries until she's tried the diet for a while.
Many I know were on the brink of surgery and the diet saved them from
losing their intestines. Once doctors begin cutting, they often have to
do it again and again, and eventually the patient has nothing left to
absorb nutrients and we know what that sets them up for, don't we?
3......... I, like your friend have both of these diseases. I really
wish her well. My thoughts and prayers are with her. I have had
Crohn's for six years and was diagnosed with CD this past Spring. This
is a very hard combination to deal with. Please be very careful with
your foods because things that would be your comfort foods for Crohn's
can no longer be eaten because of the CD. If you experience a flare up
with the Crohn's, one good thing that can still be eaten is mashed
potatos. Another thing is to make the rice pasta. The more blan you
eat the better off you are. Be very careful of high fiber foods, such
as vegetables and fruits. Have your friend contact the Crohn's and
Colitis Foundation of America in New York at (800) 932-2423 or (212) 685-
3440 to become a member. Have her ask them to send her a membership
form. It costs $25 per year to become a member. THey will send her
information periodically, including a Focus magazine with important
information in the mail. I facilitate a Crohn's & Colitis Support Group.
4.......My daughter, age 12, has been diagnosed w/Crohn's since age 8.
It is fairly well controlled with meds (Prednisone + Azathioprine
(Imuran)); her case is considered on the moderate-to-severe side(closer
to moderate these days). She is not a 'true' celiac (never biopsied) -
but is anti-gliadin IgG antibody positive and follows a strict GF diet.
She is very sensitive to gluten exposure.
It is kind of interesting how she came to the gluten-sensitive
diagnosis.
Her developmental pediatrician ordered many blood tests for the diseases
that can mimic or aggravate attention deficit disorder (which she also
has) - including the anti-gliadin antibodies. After my daughter went gf
- the diarrhea she had had daily for 2 years went away (80 - 90%). We
(dr. and us) had thought the diarrhea was strictly from the Crohn's.
Tell your friend not to panic. Crohn's can be controlled with
(powerful) meds most of the time. It is a chronic and lifelong illness
and you have to take care of yourself (always take your medicine, be
sure to go for your checkups & blood tests) but is not nearly as much
'work' as celiac. It looks kind of easy in comparison some days. The
harder part is the pain - when the Crohn's is flared up (fall is a bad
time, traditionally) the pain is a daily companion. But when the meds
are adjusted just right and life is good, the pain and diarrhea stay
away. There is a lot of variability in how severe the disease is. Some
folks just take sulfa drugs with good control, some need prednisone and
azathioprine or 6MP (same drug, really), and some have occasional to
frequent hospitalizations for more intensive treatment. I hope your
friend's case is on the millder side. You didn't mention her age.
Many are diagnosed at college age, but it can appear as late as age
60 or 70 (my aunt was diagnosed when she was a grandmother).
Tell her to check out the website: www.ccfa.org for the Crohn's &
Colitis foundation.
5.......I bet she has had Crohn's for years and something aggravated it
recently (for example, eating too many nuts on a visit to Disney World
was what brought my daughter's Crohn's to the level where we sought out
a GI doc).
6..... I have celiac and my dad was diagnosed over six year ago. I just
got my confirmed diagnosis in May through Dr. Fine at enterolab.com.
Because I also am allergic to dairy and tons of other things I recently
started going to a NAET practitioner (see www.naet.com) for treatment
of all these allergies so that I could at least add dairy back. Well
the first day of her treatment she came up that I still had lyme (from
10 years ago) but also had chrone's showing up. I was very surprised.
She has treated me for it and we are still working on the lyme. Feel
free to have your friend send me an email if she'd like an update on the
the naet treatments are going. The chrone's disease is no longer
showing up. AFter the lyme - the only things that have really helped
are alternative treatments like acupuncture and alternative medicine and
of course finding out about the celiac and eliminating the wheat and
dairy from my diet. This is hard, but once you know what is wrong you
can start getting better. Have hope! I remind myself of this often.
It is easy to get down on the bad days.
There were as many requests that I summarize as there were replies.
Hope this helps someone else too.
Anne in Texas
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