50 replies to this topic

[Wise]

Have you have any problems or doubts with your support group?

I personally do not like the fact that somebody that has not been diagnosed
with celiac disease runs a celiac disease support group. I have seen people
that runs a group because they "feel better" when they do not eat gluten and
when I want to express myself in the group they say that I am being "too negative" when saying that I still have symptoms after being on a gluten-free diet. These people do not have the same symptoms that I have; sometimes they
look perplexed when I talk about my experiences. When I ask them, they tell me
that they are self-diagnosed, do not have osteoporosis,do not have celiac genes, etc.
I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness. I am in a helping profession(with a
graduate degree) and I am scared of these people and I wonder if they are doing more harm than good.

Wise,
Diagnosed with celiac disease in 2006
DQ2,DQ8

[mamaw]

I tend to agree with a few of your points. This isn't a fad diet & some people just can not put their arms around someone who gets ill from a few grains of wheat..
What my biggest pet peeve is people who don't stay on top of this ever changing celiac disease, they who say but my doctor said go ahead a little can't harm you,cheaters who tell others it's okay to cheat,ones who only follow the gluten-free lifestyle when it is conveinent, & people who just got Dx'd & want to start a support group with no background knowledge or current info.
I guess I should clarify that these are my pet peeves ......not pet peeve.....
no information is far better than mis-information.....
sometimes you are just better off reading , reading & more reading on your own if there is no one person with correct info to share....you are correct to be safe rather then listen to untruths about gluten-free eating, celiac, & so on.
blessings

mamaw

[FooGirlsMom]

This is why I don't bother with a support group of the traditional kind. You all here are my support group Those of us here run the gambit from light symptoms to major illness. Some are diagnosed & some are undiagnosed but know they are gluten intolerant & respond to the diet. The reality is that some of us have lingering issues and will for many years depending on how bad our health became prior to going gluten free.

I know from personal experience, having been really sick in my 20s, going on a gluten-free diet really by trial & error, and seeing a huge measure of recovery for many years, then 2 years ago eating gluten at levels I'd not done since my 20s, and within a year I'm so ill I wonder if I'm dying...takes me another year to figure out what the problem really is (I was having different symptoms than in my 20s) and here I am just over 2 months later and I am seeing a light at the end of the tunnel (and it's not a speeding train!)..but I'm by no means "well" yet. It's coming along nicely & some days are better than others. But rooting out secondary food allergies has been a job, let me tell you.

You are not being negative. You come here and gripe, cry and scream (and laugh sometimes too) all you like. We'll always be ready to listen. Some days I come here to remember I'm not crazy & find a bit of sanity in my day. I thank you all for that. Truly.

FooGirlsMom

[txplowgirl]

This forum here is my support group, I tried one of those brick and mortars 1 time. I get better, more precise information here than I did at that one. More understanding, a sympathetic ear when I need one and people who understand when I need to vent without making me feel like a nutcase.
I have been able to keep my sanity because of this forum. I appreciate each and everyone here.

[chasbari]

I agree with everyone here about this being my support group. I tried the local one but just didn't seem to fit in with all the people trying to keep up appearances of a "normal" diet when there was almost nothing I could eat. Didn't help that one of the presenters from a local hospital made so many assumptions about how impossible it would be for any celiac to follow the diet and that we were all so weak and prone to cheating and on and on. I couldn't get out of the room fast enough. I am grateful every day for this place and you all.

[Jestgar]

I personally do not like the fact that somebody that has not been diagnosed
with celiac disease runs a celiac disease support group. I have seen people
that runs a group because they "feel better" when they do not eat gluten and
when I want to express myself in the group they say that I am being "too negative" when saying that I still have symptoms after being on a gluten-free diet. These people do not have the same symptoms that I have; sometimes they
look perplexed when I talk about my experiences. When I ask them, they tell me
that they are self-diagnosed, do not have osteoporosis,do not have celiac genes, etc.
I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness.

Wise,
Diagnosed with celiac disease in 2006
DQ2,DQ8

Well, I don't have a formal diagnosis, and I don't happen to believe that you are more deserving than I of support. I'm quite certain that I feel better when I don't eat gluten, and I'm also quite certain that that it's not a mental illness causing me to believe this.

People have different lives, and I personally don't believe I have the right to judge someone else's illness, nor do I believe you have the right to judge mine.

[psawyer]

Just off the top of my head, I can think of two people who are widely recognized for their efforts in support of us, who do not themselves have celiac disease.

Danna Korn

Shelley Case

You don't need to have celiac disease to be informed about it and help people with it survive.

You clearly had a bad experience with one group, or maybe just one individual.

This community is a wonderful support group (I may be a bit biased). Not all of us have an "official" diagnosis, and some of us are here because a loved one has celiac disease. We are here to help each other cope.

[tarnalberry]

Have you have any problems or doubts with your support group?

I personally do not like the fact that somebody that has not been diagnosed
with celiac disease runs a celiac disease support group. I have seen people
that runs a group because they "feel better" when they do not eat gluten and
when I want to express myself in the group they say that I am being "too negative" when saying that I still have symptoms after being on a gluten-free diet. These people do not have the same symptoms that I have; sometimes they
look perplexed when I talk about my experiences. When I ask them, they tell me
that they are self-diagnosed, do not have osteoporosis,do not have celiac genes, etc.
I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness. I am in a helping profession(with a
graduate degree) and I am scared of these people and I wonder if they are doing more harm than good.

Wise,
Diagnosed with celiac disease in 2006
DQ2,DQ8

I think the problem you describe has nothing at all to do with the diagnostic status of the person in question, and everything to do with his/her personality. Not saying someone is "too negative" or having the same reactions that you do or having osteoporosis - none of these things are required with celiac disease. As someone who decided NOT to make herself sick again just for formal testing after inconclusive blood tests and didn't feel like wasting money on gene tests that are far from all that helpful in diagnostic purposes, I don't feel that there is any evidence that I'm rather suffering from a mental disease, or that I'm harming people by offering support (even some of the tough love, "you're too negative" advice) here either.

I'm sorry that you had a bad experience at this particular group. Perhaps you can try another one, try a different kind of (generalized) support group, make more use of this group here, or find another path that can help provide the support that you would like.

[codetalker]

I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness. I am in a helping profession(with a
graduate degree) and I am scared of these people and I wonder if they are doing more harm than good.

Wise,
Diagnosed with celiac disease in 2006
DQ2,DQ8

While reading your post and the various replies, I was stuck by the notion that finding and attending a support group has a lot in common with finding and attending a church.

In both cases, the leaders usually “hear the call”. In both cases, most leaders are sincere, caring people although there can be and on rare occasions is a Jim Jones, Marshall Applewhite or Terry Jones. It can be said that those three do more harm than good and do scare a lot of people.

Even wholesome, mainline religious groups with sincere, caring leaderships do not always have something to offer everyone. That no doubt accounts at least in part for the vast variation in religious groups.

The big difference is that, while most areas have multiple religious groups to choose from, there usually is no more than one support group. That forces the group into a one-size-fits-all mode. That is a difficult role to play.

In the tri-state area here, there are three very good groups with very good leaders. Locally, the biggest historic problem has been enough celiacs to make the group viable. Numbers may be one of the strengths of forums, like this one. With so many people, it is likely that someone can find a subset of members with which to identify.

[dilettantesteph]

Someone in my local support group ate McDonalds fries in front of the group to illustrate how they were safe to eat. Then I found that he wasn't diagnosed! I can commiserate.

[teachin4]

My problem with my local support group is that it is not designed to be supportive of its members. Instead it is designed to be supportive of the business that offers the meeting place. Our job is to sample her food, tell her how wonderful the food is and how wonderful she is for being a gluten-free business, and then go tell everyone about her business. I understand that this is how many supports groups start, but it is annoying how clear the message is. We really can't ever give honest reviews of her products. She also spends a lot of time trashing every other gluten-free business around. Real issues are ignored, but everyone knows which kinds of gluten-free baking she's doing that month. She is a real self-promoter who acts as though she knows more than she does.

teachin4

Have you have any problems or doubts with your support group?

I personally do not like the fact that somebody that has not been diagnosed
with celiac disease runs a celiac disease support group. I have seen people
that runs a group because they "feel better" when they do not eat gluten and
when I want to express myself in the group they say that I am being "too negative" when saying that I still have symptoms after being on a gluten-free diet. These people do not have the same symptoms that I have; sometimes they
look perplexed when I talk about my experiences. When I ask them, they tell me
that they are self-diagnosed, do not have osteoporosis,do not have celiac genes, etc.
I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness. I am in a helping profession(with a
graduate degree) and I am scared of these people and I wonder if they are doing more harm than good.

Wise,
Diagnosed with celiac disease in 2006
DQ2,DQ8

[Lunabell]

I think support groups are only as good as the culture of that individual group, regardless of the reason for the support group. I was in a breastfeeding support group and it did not help because it was a very strident group. My friend went to a different one, and had a fabulous experience because her group had a different tone.

I am being careful as I check out local groups for Celiac. Luckily, one also has an email group, so I can figure out the tone before jumping in. I think support groups can be invaluable for learning and exchanging info, but the amount of support depends on what that person needs and has to give and how that fits into the group culture.

[Wise]

Hello, everybody, happy new year!!!!


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.

Wise

[mushroom]

Well, support groups is one thing I don't have to worry about since New Zealand Coeliac Society does not recognize gluten intolerance and will not let you join without the
'official diagnosis', another case where support groups are doing more harm than good. And there is no Gluten Intolerance Group here. So this board is my support group, and a great one it is too, because the main criterion for posting here is that you obey the board rules It matters not who diagnosed you or how - the only thing that matters is that gluten does you harm and your are seeking the collective wisdom of people who suffer as you do. And believe me, with psoriatic arthritis and multiple food intolerances, I take this disease very seriously.

[Jestgar]

Well, sadly, due to the ineptness of a lot of physicians, I think the majority of people on this board are self diagnosed, including a lot of the moderators, so you may not care to hang around with us, either. But good luck to you dismissing help from caring people because they do not meet your self-defined minimum criterion.