Problems With Support Groups

[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.

Open Original Shared Link

Open Original Shared Link

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

[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.

[dilettantesteph]

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.

I am sorry that you have had this problem. Also discrimination due to being Latino(a). In my experience many of the self diagnosed people are those with the most serious symptoms who take the diet most seriously. Many are not diagnosed because they were too sick to stay on gluten while waiting for a biopsy. As soon as they had an idea of what the problem was they got off gluten immediately. They refused to go back to gluten for a biopsy because it would make them too sick. I think that you are showing your own form of discrimination against self diagnosed people. Just because you met some who did not take the disease seriously doesn't mean that all do.

[luvs2eat]

I remember going to an "informational" support session (it cost $25) at my local hospital after I was formally diagnosed. The stupid woman not only did not have celiac disease... she kept calling it "celiacs" and spent more time talking about her "fung shue" (sp?) business and how rearranging our furniture would help us!!

She handed out a food list that anyone could have found on the internet and served the most awful gluten-free brownies I've ever had!

The poor woman next to me was so desperate for answers to her daughter's issues, I wrote down this website for her and told her HERE was where she'd find answers to any of her questions.

I left 1/2 way thru the ridiculous session, asked for, and received a refund of my $25! The woman at the educational dept. of the hospital said many had demanded their $$ back!

[tarnalberry]

...

A person that is self-diagnosed is not going to take

the disease seriously, because unconsciously the person

has doubts about it.

...

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.

On the first statement, I couldn't disagree more. I don't consider myself formally diagnosed since I didn't get the biopsy, but I - and my husband - do not have doubts about it. Do some? Sure. But celiac diagnostic status does not determine a person's personality.

On the second statement - so you found a group that didn't have the goal you wanted it to. I teach yoga classes and have had students give me some great idea; but they are not what I'm teaching. There's nothing wrong with the idea, but it's not a part of what I am intending to teach, so I don't use the idea. Doesn't mean that the idea was bad, or that I'm a bad teacher, just that there is more than what one person - or group - can offer. So that group didn't want to implement your idea - form a group that will.

Sense of purpose has nothing to do with diagnostic status. I have a sense of purpose behind teaching yoga. My husband has a sense of purpose behind playing WoW. A friend of mine has a sense of purpose behind dog rescue. We all have different purposes, and just because you are diagnosed with something doesn't mean you have to be an advocate for it. (I have no interest, for example, in being an active, community advocate for vulvar vestibulitis or fibromyalgia. They are worthy interests and things to support, but I have other things that I would prefer to support. Doesn't mean I'm wrong, it means I have my own interests.)

Since this is such a bad fit for you, consider starting your own group for others who are looking for something more like your group.

[Skylark]

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

Your post makes me really mad. I am sorry to hear that you were being discriminated against, but you have just done the same to ME!!!

You honestly believe I'm supposed to poison myself and risk long-term health consequences for a couple months to get a piece of paper that tells me what I already know - that I need a strict gluten-free diet? And why do you think you're smarter than all four doctors who have told me I should not harm myself by eating gluten for a largely meaningless test result? You don't have access to my medical records, my history, my family history, or anything to evaluate the accuracy of my self-diagnosis.

I'm sorry, but you need to rethink your attitude against self-diagnosed celiacs. I know there are crazies out there, but many of us are every bit as celiac as you are, and get every bit as sick from gluten even if we don't have a lab slip to frame and hang on the wall or didn't choose to pay for an overpriced and largely meaningless genetic test to put in our profiles.

[chasbari]

I think I see both sides of the coin here. I have gotten tremendous information and encouragement from many people here including self diagnosed, those who thought they might be but later found out they weren't but felt a part of this community anyway and had a better empathy for those of us who are now lifers, from officially diagnosed, from supportive spouses of or parents of sufferers. It is a wide open community here that is well moderated and full of people who RESPECT each other. I have made foolish statements in trying to understand this whole thing and have had almost nary a harsh word whereas in other forums I would have been ripped and trolled and who knows what. This is a uniquely compassionate place. I have had bad experiences in support groups and have chosen not to participate. It seems that Wise has encountered a very negative experience in a face to face situation with a seemingly insensitive or ignorant trend follower. I am going to go off the deep end and out of my experience zone to also note that she, being Hispanic, might have had to deal with subtle or not so subtle episodes of discrimination and that this mix of factors made what might have been a merely annoying situation into one that was downright insulting.

I think we all understand, on some level, the fact that it is hard to get people (let alone doctors) to take our complaints and ailment seriously. I think about a lifetime of being told I wasn't really sick and it must all be in my head. It's complicated enough and I think that the good folks here who are self diagnosed because of whatever reasons might just feel this same dynamic of not being taken seriously.

This is a big place with good people where cooler heads prevail. I think time will help us all understand this better. That's one thing I didn't think I had any more of three years ago.. time.

Peace,

Chuck

[beefree11]

I would not think twice about running a support group and I don't have a gluten intolerance nor a celiac related condition. As long as I had the most current information and was willing to help as much as I could.. oh, wait. I am doing that HERE!!!! lol!

Bringing awareness and offering real help and hope to others is a good thing, in my book.

My daughter only has a blood test that confirmed allergy/intolerance. She would have to go back on gluten for many days to be tested by an invasive procedure. The ONLY concrete evidence she has that there are problems with certain foods is by the way she feels. She is also Hashimoto's and has been for five years. After testing positive to mono awhile back, we were convinced she was exhausted (fell asleep at traffic lights in her car) due to that while all this time it could be due to gluten/diet! But NOT ONE doctor would test. She went through an awful experience before the doctor in 09 tested and found an "intolerance" to gluten and an allergy to wheat! We stopped all gluten/wheat/rye/barley and she is BACK on the dean's list thru management school, while working odd hours!! YAY!

But anyone that would take time out - volunteer their services - to get the information out? I would like to say thank you.

ETA: Can there be actual physical damage or harm by NOT eating the products passed off as nutritional today? Really? Forget the gluten for the moment, think about the additives, preservatives, the bromide on most baked goods. By informing just the general public would be helpful, imo!! And I read somewhere that "No humans fully digest gluten" Could it be all the other "junk" mixed in too that we are getting sensitive to? Food for thought

[Takala]

I don't do real life ones, I don't know if they could take the beatings I would administer with the cane I used to have to use to walk with, if some clown told me I was being a lifestyle dilettante moshing on their Serious Auto Immune Disease diagnosis.

Then I would sneak out to the parking lot and chock their wheels with a loaf of Ener- G. That would show them. Tapioca. It's not just for pudding.

[Rowena]

So I can see where you are coming from. I would hate to attend a support group with someone who only thinks they are Celiac. I myself am not Celiac, according to a blood test at anyrate, but I do have an official diagnosis of gluten-intolerance, after my doctor saw what the diet did for me. But I think, correct me if I am wrong, your problem isn't the fact they ain't diagnosed with Celiac, its that they are DOING their own diagnoses and then leading a group based on their experience, and not necessarily with fact. Yes, that would annoy the hell outta me. I don't want experiences when I go to a support group. I want facts and answers to my questions. Sure experiences are nice, but really in the end, this is a trial and error with your basis being made by facts.

Beyond that, I have not attended a support group, because I can only find one around here, and it doesn't meet very often. I personally would like more from a support group than "How to plan for the holidays." Or other special meetings. Not to mention the meetings aren't at a regular time. The two I noticed were on different weekdays, and I think at different times. I want something a little more reliable than that. Plus I would probably get SO fed up with them anyway. I personally just prefer to go here. The information is reliable and up to date. And lots of stories and recipes and such to help me cope. THIS is my support group. Not to mention, its easier to focus on things I actually care about here than in a live support group.

By the way, Takala, I love that "Tapioca. It's not just for pudding." I am so stealing that.

[catarific]

I wish there were a support group near me or people in my area I could speak with by phone. You know to discuss where to eat, where to shop for gluten free products, maybe recommend a good gastroenterologist who understood celiac and/or gluten intolerance in the area, etc. My support group is all of you and I am truly blessed to be here. My husband is very supportive and helps me shop and eat right - but it sure would be nice to have someone close who really understood the hurdles.

[runningcrazy]

If you don't like your support group you don't need to stay. I am not a diagnosed celiac but I take the diet extremely seriously and I react to even little crumbs. I know just as much about being gluten free/celiac then any other person celiac or not, following the diet. I think if someone has enough time/energy to make a support group they obviously care a lot about the gluten free lifestyle, and try their best to help others. If they aren't working out for you, you can always find a new one or just get on with the diet without the help of others. Personally I visit this website just periodically when I'm bored, I get along fine without a support group.