<<Disclaimer: Verify this information before applying it to your situation.>>
I posted the results of my gene test (HLA-DQB1*0501, 0604) because it
doesn't necessarily identify celiac although I seem to be very sensitive
and a gluten challenge is really not an option. Several people wrote and
said that a gluten challenge isn't recommended because it could cause
further damage. No one had the exact subgroup of genes I do, but one
person wrote that she has the same gene HLA-DQ 1,1but different subgroups.
She is also very sensitive.
Several people asked where to get the gene test done. I ordered the test
off Dr. Fine's web page:
http://www.finerhealth.com/Educational_Info/Gluten_Sensitivity/.
I think it's strange that I probably have a disease which will probably
kill me if I don't stay on a strict diet, but I'll never know for sure.
It's hard to explain to people why I have to always bring my own food, even
at restaurants, but as long as I have good health I really can't complain.
So GF forever!
Susanne
_ _ _ _ _ _ _ _ _
Look at it from the good side: When an insurance company
asks if you have ever been diagnosed with celiac disease,
you can truthfully answer "No". It is to your advantage.
I've been reading things recently from people who can't get
medical insurance because of CD.
I'm lucky like you. I used to be sick and not know why. I
had Dr. Fine's tests done months after going GF and had
results similar to yours. My doc finally decided I needed a
small intestine biopsy 6 months after going GF. Of course
it was negative. So I have no diagnosis of CD. No big deal
to me. At least now we know what sets us off and we can
keep away from it. Stay healthy!
_ _ _ _ _ _ _ _ _
Dear Suzanne, Just realized that I may actually carry the DQ8, the other
common Celiac gene since I realized that the DQ8 alleles are DRB1*04,
DQA1*03, and DQB1*0302. I already have DRB1*04, checking for DQA1*03, and
DQB1*03(need to find out if also have 0302). The analogy the HLA typing
lab
told me is like this: 03 is Ohio but to know if you live in Cincinnati,
Ohio, you need to find out if you also have 02. In addition, I have DRB4.
In a study of Spanish Celiac patients who were DQ2 (most common Celiac
gene)
negative, 83% of them were found to carry the DR4 (DRB4) DQ8 combination.
From what I've read 90% of Celiacs carry DQ2 and the remainder DQ8 and/or
other very rare genes.
When you say you have DQ1, would that be equal to DQB1*01. Were your DR's
checked because this is what I've found in one of my medical studies I
researched as quoted, "...the DQ2 negative patients lacked the DRB1*0101
DQB1*0501 combination, as well as the DQB1*0301 allele, all of which were
frequent in the DQ2-negative control group...." The controls, of course,
are the healthy individuals.
So, if I was in your situation and really felt I had CD, I'd probably want
to also have my DR's checked, since many of the rare Celiac patients who
were DQ2 negative had what I have, the DRB4.
_ _ _ _ _
My gene tests by Dr. Fine's lab are as follows:
"HLA-DQB1*0602, 0602; Serologic equivalent: HLA-DQ 1,1
Interpretation: HLA gene analysis reveals that you have two copies of a
gene that predisposes to gluten sensitivity (HLA-DQ1 subtype 0602). Having
two copies of this gene means that each of your parents and all of your
children possess at least one copy of the gene as well."
I notice we both have the H:A-DQ1. I also am very, very gluten sensitive
but my doctor who is an internationally recognized celiac expert does not
want me to do a gluten challenge. She contends that it would possibly
cause a second autoimmune disease. I agree with everything you said in
your email. I wish, also, that I could have had the "gold standard test."
_ _ _ _ _ _ _ _
Yes, you don't have the common genes but I've been looking at the rarer
genes but my discussion with Dr. Murray through written correspondence and
in person at recent conference is that it makes it a lot less likely to
have
Celiac Disease but he can't rule it out either and being that I'm still
symptomatic he wants me to watch my symptoms just in case something else is
or is also there. I am still determining if I carry up to four of the
genes
found in Finnish and Spanish Celiac patients who did not carry the typical
Celiac genes like me. Are you of European descent? I'm Asian and Dr.
Murray admits, small if no studies have been performed on the Aian
population genes. Right now, I trying to tract down a study performed on
DH
patients in Japan. I'll see if I find your genes.
Did you know that gluten intolerance is the same as Celiac disease? Dr.
Fasano at the same conference said that the only time it wouldn't be Celiac
Disease, it would be called gluten sensitivity and he gave an example of an
asthma patient who gets an asthma attack after ingesting wheat. This is
not
a GI reaction but an IgE or skin or inhalation reaction.
IN some ways, I'm glad you didn't go all the way with gluten challenges
like
me with 3 under my belt. I believe now that they are the reason for my
continued failure to fully retain my health as now I have a lot of stomach
damage. Previously I thought the lymphocytes only attacked the small bowel
and the cells would turn over in a matter of days. Now, the researchers
are
saying that the cells may turn over but the gut shape takes longer to
reverse as it's been remodeled from the damage. Also, they are finding
these lymphocytes even in the stomach and colon, both causing what is
called
lymphocytic gastritis (stomach) or microscopic/lymphocytic colitis (colon)
and even find that a clone of T-cells, a form of lymphoma, have been found
both in the skin and stomach. I may do a post on this in the future.
_ _ _ _ _ _ _ _ _
There seems to be a distinct percentage of people who do not have the
recognized genes for celiac, but are gluten intolerant. I am one of them.
I also had the celiac panel blood test and was +40 for IgA gliadin
antibodies. Negative on the other two.
So, there seems to be a whole range of us out there.
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