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My original post :

 

I have a friend whose 12 yr old daughter has been diagnosed with Crohn's and
rheumatoid arthritis.  She has shown no improvement over the year since her
DX in June.  I suspect she may also have CD but the doc is resistant to
doing a blood test.  She didn't find cd on the scope last year and is not
open to that suggestion.  I personally think from her symptoms that it is
very likely that it is CD.  However, I am aware that these conditions share
symptoms with CD so I know it is confusing for the family.

 

At this point the doc is suggesting treatment with remicaid - but the dd
hasn't been infection free long enough to start the process.  Has anyone out
here had experience with remicaid?  Or with being told you have crohn's or
arthritis and then finding the CD.  I am scrambling for info to the help the
mom find an answer - but the docs seem determined that the answer is firm
and don't wish to continue to search.  The parents are very frustrated.

 

Any words of wisdom or comfort out there?

____________________________________________________________________________
________

 

My heartfelt thanks to all of you who did, indeed, send words of wisdom and
comfort.  I had an overwhelming response from folks who also have walked
this path of multiple, difficult, chronic illnesses.  The responses were too
lengthy to copy them all here so I will summarize the general information.

 

Obviously, these diseases are often confused - even by doctors that are
expert in their respective fields.  The symptoms of Celiac overlap with both
Crohn's and RA.  It is possible to have all three and it is also possible to
have the Crohn's or arthritis without the Celiac.  So, nothing is certain!
Many people, however, have suffered needlessly because the celiac wasn't
discovered until after a great deal of damage was done by the other
afflictions. Several medical studies have been done that show a high
incidence of celiac with both of these diseases.  

 

Several people report that the other symptoms cleared greatly or went away
when they began a gf diet.  At least 2 reported that their symptoms did not
change with the diet.

 

Several cautioned that biopsies are not always correct (false negatives) -
either not enough samples are collected, or they are read improperly, or
interpreted improperly.  Many urged using a lab such as Prometheus or Mayo
that is well versed in doing these tests.  Some doctors only diagnose celiac
if there is complete villous atrophy and many cases are missed in this way.

 

Many people encouraged testing through Enterolabs.  These tests are non
invasive, can be ordered without the doctor and can also show other issues
such as milk sensitivity.  Several folks cautioned that Crohn's patients
need to avoid dairy so this test would be helpful in that regard as well.

 

I received many, many suggestions that a second opinion is needed before
taking ANY drastic action.  You may love your doctor but there may be other
options out there and it is good to hear another perspective.  It is
difficult to argue with a doctor because we are placing ourselves in their
care and want to trust them.  However, it is vital to remember that we must
remain a vigilant advocate for ourselves and our children.  Many medical
decisions are based on opinions and interpretation - not necessarily a clear
cut answer.  Your local Celiac support group may have lists of recommended
doctors that are celiac aware.  

 

Several folks with RA have gotten relief from pain by going gf - even
without a diagnosis of celiac.

 

I got lots of encouragement to just try the diet - and forget the diagnosis.
If it fixes the problem you have your answer. 

 

Another point made was that while some Celiacs see vast improvement in 2
weeks, many others - particularly those who were very ill - do take longer
to improve.  So, don't expect overnight results.

 

There was a caution that the steroids many Crohn's patients are taking will
interfere with antibody testing  - making serology tests unreliable.

 

Several folks have had good results from Remicaid and it did bring relief
from Crohn's symptoms.  Many have an initial allergic reation  that can be
resolved with Benadryl before treatments.  It can take months to see the
improvement.  Patience - again.

 

Others fear trying it because it does have many potential side effects and
is a powerful drug.

 

I guess the general consensus would be to pursue testing at this point. But,
even in the event of a negative result, it would be valuable to try the diet
since there is a high incidence of false negatives.  It is also possible to
be gluten intolerant without having full blown celiac disease.  Another
point is that the diet is far less costly and non invasive than the
alternative treatments.  Doctors are quick to prescribe chemical treatments
and procedures.  Sometimes they are absolutely necessary - sometimes there
are better alternatives to explore.   After the diet avenue has been
exhausted then Remicaid may be the best option.

 

This website was suggested for discussion with other folks suffering from
Crohn's and other inflammatory bowel diseases:
http://www.dragonpack.com/ibdsupport/parents/  

 

Thank you again to the many people that responded on this issue.  I am
sharing all this information with my friend as they decide what course of
action to take at this point.  I have tried to write to each of you
personally - I can't tell you how much I appreciate the information I
received.  It is very helpful.  Where would we be without the kindness of
strangers?  This forum is great!

 

Becky

 

Other websites shared:

www.prometheuslabs.com/550.asp?nav=pat

www.enterolab.com <http://www.enterolab.com/>
www.finerhealth.com <http://www.finerhealth.com/> 

http://brain.hastypastry.net/forums/

http://brain.hastypastry.net/forums/showthread.php?t=2132   (see 4th and 6th
post for these issues)

http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=9 

http://glutenfreeindy.com <http://glutenfreeindy.com/> 

http://www.cbc.ca/news/adr/database/

www.celiac.com <http://www.celiac.com/>
www.gluten.net <http://www.gluten.net/> 

www.immco.com <http://www.immco.com/>
www.naturalfoodworks.net <http://www.naturalfoodworks.net/> 

www.breakingtheviciouscycle.info <http://www.breakingtheviciouscycle.info/>
www.houstonceliacs.org <http://www.houstonceliacs.org/>  

http://www.aafp.org/afp/20021215/2259.html

http://www.celiac.com/st_prod.html?p_prodid=87
http://digestive.niddk.nih.gov <http://digestive.niddk.nih.gov/>  

 


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