Thank you for answering, my god, I would never imagine that you would have so many answers for me. For some
of you, I know, I understand you, but I cannot
support self-diagnosed people, I think that they can do more
harm than good( they can do a lot of harm to themselves) I am going to be explaining myself.
A person that is self-diagnosed is not going to take
the disease seriously, because unconsciously the person
has doubts about it. Let me tell you... when I gave my
support group a wonderful idea that would benefit the
entire celiac community(related to community work pro
celiacs)the group leader(who is self-diagnosed with
no osteoporosis or celiac genes, I suspect she does not have the disease)rejected my idea saying that that was
not the purpose of that support group, because the
purpose was to "create awareness" about the disease. This
self-diagnosed people do not feel a sense of purpose,
this is psychological.
Other thing that I have to mention because I have to be honest with this forum , hoping that the moderator that reads this does not crucify me ... the first time when I joined the support group and I introduced myself, the leader of the group asked me, using irony,
ohhh, do you have celiac??? And the other person that was
registering the new people asked me the same question
in a very offensive way, too. I did not get it at first,
but I realized later, that it was maybe because I was the first Hispanic of the group, being in a state that is
famous for its laws that don't favor immigrants.
Yes, in the revised edition of Celiac Disease, By Dr. Green, he mentioned that they have seen Cubans and Puertorricans being diagnosed with celiac. It happens
that I am from Puerto Rico, born and raised there, but
I decided to come to US to do graduate work and I decided
to stay in the states. I have been reading a lot about my disease and Puerto Rico and I discover that Puerto Rico is one of the places in the world with high incidence of diabetes type 1( link with celiac?) and I dicovered also reading a book on gluten-free diet that
an American doctor on a trip to Puerto Rico, in the
beginning of the 20th century, had noticed that when the
country men in the island ate wheat, they got sick(another link with celiac,I am not talking about tropical sprue).
Leaders in support groups should understand that when
people are diagnosed, they look for support groups, looking for "s-u-p-p-o-r-t"; this disease is
not easy, you lose a lot of the social contact, because
of the nature of the disease that isolates people. If we look at the studies linking social phobia with celiac disease, you will understand this well. One of these days I will get into one of the forums to discuss this
study done in Europe. Again, thank you for your answers.
A big hug to everybody. I love you.