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I posted about my friend's son's Enterolab tests coming out negative in
spite of his chronic illness & his family's appearance of a typical gluten
sensitive family. BTW, she sent me the test results & this young man does
have two copies of one of the least common genes that predispose for gluten
sensitivity, so I'm trying to convince her not to give up on the diet so
quickly.
I believe it's likely that the young man is IgA deficient, as it states in
teh EnteroLab test results. I talked like a Dutch uncle to try to explain
what that means, but I miserably failed in that attempt. Hopefully, some of
the information I've forwarded her from the respondants will help convince
her either keep searching for more conclusive tests or at least give the
diet an adequate trial period.
A couple of respondants asked about scoliosis & I explained the scoliosis is
not a symptom of CD, but that it does tend to "run" in celiac families.
Some peole suggested my friend look into water purity & nutritional
deficiency issues. Below are the more complex responses. If more responses
come in, I will summarize them as well. ~Valerie in Tacoma
-------------------------
It took me two weeks on the GF diet before I noticed a difference. Perhaps
that would be useful (I see below they only tried it for a week) although
the mom may not want to do this if her symptoms got worse. But haven't some
people written about worsening symptoms because of the body adapting before
getting better?? Deb, Newark, DE
--------------
All their symptoms sure sound like CD/GS. It is surprising the tests came
back negative. Could the family be IgA deficient? That could give false
negative tests. Have they thought about doing one of the large food panels?
I have met so many people who have to eliminate many foods to to heal.
(don't you have to eliminate more than gluten?) I had to give up yeast and
gluten - yeast made me just as ill.
There is a list of labs here
http://jccglutenfree.googlepages.com/internetdirectory - scroll down to
Alternative and Delayed Food Allergy Laboratories One lab that is not
mentioned is MRT http://www.mrtlabs.com/
One week trial of a GF diet is not long enough. There are some
people who do not notice a positive difference for weeks. Also it takes more
than a week to get the hang of living GF - I know I made lots of mistakes in
the beginning.
Where do they live? I heard Dr. Wangen talk at this year's GIG
meeting. Here is his website. He recognizes that food can make us ill.
http://www.ibstreatmentcenter.com/index.htm He is in Washington. Dr. Scott
Lewey also recognized the role of food but he is in Colorado.
http://thefooddoc.com/
---------------
Enterolab has the advantage of testing stool which is an earlier and more
sensitive medium, but they still only run AGA-IgA and tTG-IgA if I remember
right.
The gluten community is missing testin for the gluteomorphins.
They should also be tested as they are the antibodies to gluten itself, not
gliadin which is a subfraction of gluten. Some folks have one or the other
but not both. ALSO ALL the antibodies should be tested for IgA, IgG, and
IgM. If these aren't all tested then there have been some stones left
unturned. This is how a lot of folks are being missed in the standard
testing panels.
This means that just for gluten all these test should all be run:
AGA - IgA, IgG, and IgM
gluteomorphins - IgA, IgG, and IgM
tTG - IgA, IgG, and IgM
Wheat (the whole kernel) - IgA, IgG, IgM Check for any unknowns in the
whole kernel.
The only lab that offers all these tests is Neuroimmunology Labs , for which
Dr. Aristo Vojdani is consultant. They have two panels - a gluten only
panel with these tests only, and a much more complete panel that also tests
cross reactive foods and susceptible organs for damage. It is the best most
complete panel out there that I know of.
Also ALCAT labs tests food and other substance panels that include gluten,
gliadin and wheat. They don't look for antibodies. They expose the white
cells to the antigen and observe for adverse reactions, eg, granulation,
swelling, etc. The ALCAT tests are "another stone to look under" , another
system to check, as you try to exhaust all options. As with all the other
tests, a positive ALCAT test tells you there is a problem. A negative test
merely says that that system didn't react. There is no guarantee that
another systems won't react.
Thirdly, I have come across a regime out of left field that is unusual, but
has remarkably high recovery rates for many health problems. It takes some
explaining, but I have personally met or know 4 people who have recovered
from serious illnesses. There have been many recoveries including cancer,
diabetes, fibromyalgia, failure to thrive, chrohn's, meningitis, you name it
on this regime. Frankly your young man sounds like a candidate and that the
program might benefit him greatly. It has literally brought people back
from their deathbeds.
If you want to know more about it let me know. It is a gluten free regime
but very much farther out than that, and uses foods.
If you or your friend wish to contact me by phone about it, my number is
630-628-9126. I have unlimited calling so can return their call to
eliminate the bill.
Sincerely,Olive Kaiser
-----------------
Valerie, my granddaughter also tested negative - I know she has a gluten
problem... She has since gained a lot of weight & lost all the enamel on
her teeth - she is 9 years old.
She is a doulbe DQ1 like her brother & me & my sister & heck just about
everyone in my family & we have problems...
I would contact enterolab & ask them to rerun the tests at no charge.
Then be sure to tell the family that really the true test is the results
from a gluten free diet & to just forget the tests & take the child GF &
dairy free, ASAP... I know you know the drill...
jeanne webb
---------------
I am not an expert on CD, also I am not a doctor (fortunately), but I am
reading a lot about CD for last decade. That family could have Candida
Albicans, which is tough to diagnose. However, one week without gluten is
not enough to see result in some people. In addition, were they strict
gluten free? I am wander I noticed different after 3 days, but we are all
different. Personally, I do not trust those tests, because none of them is
reliable.
Kevin, Toronto, Canada
-------------------
Enterolab testing are helpful for looking for non-celiac gluten sensitivity
and very early celiac disease before the blood tests become positive but
they do not test for the broader problem of food and food additive/chemical
sensitivity.
Two options for this include MRT testing through Signet Diagnostic
Corporation (www.nowleap.com) and Alcat food sensitivity testing
(www.alcat.com). The MRT testing many of my patients have found very
helpful, some dramatically so but not everyone has benefited. A few
patients I have seen have had the Alcat tests done. I believe their testing
may be more reliable. As a result I am going forward with offering this
testing to my patients in my practice as well as part of a larger "The Food
Doc Comprehensive Food Sensitivity Panel" that we are putting together in
concert with the relaunch of my website www.theFoodDoc.com. The site is
being completely redone and we anticipate relaunch on Monday or Tuesday
though it may take up to 48 hours to access the new site. Please check
back.
In meantime, encourage your friend to investigate the Alcat tests which
like Enterolab can be ordered without a physician order. It is most helpful
to work with a physician or health care provider and/or
dietician/nutritionist to interpret these tests in context of a detailed
food sensitivity and medical history. Unfortunately the majority of
physicians including gastroenterologists do not understand food
intolerance/food sensitivity, don't believe in its existence or the testing
or all of the above. That is why the Food Doc is coming to existence as a
web based educational site and service.
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