50 replies to this topic

[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.

[Gluten-Free in Easton]

Gee, I just joined Celiac.com and wrote my first post asking if anyone was interested in participating in a Celiac or gluten-free support group in Fairfield County, Connecticut which I would be interested in hosting. I'm dreading the response I am going to get since I may be considered "self-diagnosed." If I am successful in getting any active participation, I will definitely be sensitive to the diagnosed Celiac sufferers. Hopefully I will be able to get an actual Celiac to lead the discussions or be active in the planning. Thank you for bringing this concern to my attention.

In defense of those who are "self-diagnosed," many of us have been advised by both traditional medical professionals and holistic practitioners that eating gluten free would lessen our inflammatory reactions. Two of my friends have been told based on blood work that they were on the verge of becoming Celiac. In my case I was extremely frustrated by traditional medicine and its tendency to medicate instead of addressing the causes of health issues. I have mixed connective tissue disease (a mixture of lupus, rheumatoid arthritis and fibromyalgia) and my life has changed for the better since I no longer eat gluten. I do everything in my power to eat gluten free and when gluten unintentionally passes my lips and into my gut I suffer with intestinal distress and body aches. I'm planning on getting to a gastroenterologist in the near future. Most of the people I know who are not diagnosed with Celiac disease but eat gluten-free didn't realize they were getting stomach aches regularly when they ate wheat or gluten. Perhaps we didn't notice because of all the migraine headaches, chronic fatigue and joint aches.

Whether or not one is a Celiac or just gluten-intolerant, we would all benefit from open discussions and sharing our knowledge. The more we speak out, the more likely research and awareness will progress. The more visible we are as a group, the more sensitive the food industry and the medical community will be to our needs.

[mushroom]

Yes, some folks who are diagnosed with celiac disease somehow seem to think that this diagnosis makes them superior to someone who is not. I guess it's the "my disease is more serious than yours" syndrome of one-upmanship. It makes me laugh really. You have to feel sorry for them, trying to gain sympathy points in life with a celiac badge when the actual disease syndrome is an intolerance to gluten, celiac being one form of that intolerance.

[etta694]

Here I go... stirring the pot... but - I am going to start a support group... and I am self-diagnosed. WAIT!!! There is a good reason. I live in a very small town and we have to drive 2 hours to buy any kind of supplies other than rice flour and about 8 other things. Secondly, the doctors here are very slow to recognize anything other that a positive blood test and all of us are suffering and need support. I have also been reading and reading this forum for days now and 1. I am so very thankful for the forum, 2. I am so very thankful to have only the problems that I have.. ie - I am not sick if I don't eat gluten, 3. and I am so very appreciative of everyone who shares their experiences because I realize there are people who are going through H---- on earth and I don't have a CLUE what that is like. And, if I start a group, they need to be safe in this group. Our issues?.. in this town their is nothing for Celiacs or any derivative of it and I would like there to be some public awareness and support for those who need it. Also, there are many people here who don't have enough computer savvy to access the net or who don't even use a computer. The first thing I want to do is give those who use a computer the address for this forum. I can see it could be the difference between.. life and insanity..

[IrishHeart]

Here I go... stirring the pot... but - I am going to start a support group... and I am self-diagnosed. WAIT!!! There is a good reason. I live in a very small town and we have to drive 2 hours to buy any kind of supplies other than rice flour and about 8 other things. Secondly, the doctors here are very slow to recognize anything other that a positive blood test and all of us are suffering and need support. I have also been reading and reading this forum for days now and 1. I am so very thankful for the forum, 2. I am so very thankful to have only the problems that I have.. ie - I am not sick if I don't eat gluten, 3. and I am so very appreciative of everyone who shares their experiences because I realize there are people who are going through H---- on earth and I don't have a CLUE what that is like. And, if I start a group, they need to be safe in this group. Our issues?.. in this town their is nothing for Celiacs or any derivative of it and I would like there to be some public awareness and support for those who need it. Also, there are many people here who don't have enough computer savvy to access the net or who don't even use a computer. The first thing I want to do is give those who use a computer the address for this forum. I can see it could be the difference between.. life and insanity..

Good for you, Etta!

[etta694]

Thank you!! That means a lot to me... you know, its hard to go through some things alone. It's much easier with wisdom and encouragement. This forum is downright awesome, I must say. Pip Pip!(IrishHeart.. you have a big heart~!)