Problems With Support Groups

[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~!)

[IrishHeart]

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~!)

Well, you go, girl!! We are our own best advocates and yes, this forum rocks. I learned more from googling my symptoms for 3 years and having many of them "land" right here than I learned from consulting over 30 "professionals". These people unknowingly helped saved my life, in a sense, and I wasn't even a member yet!!

I figure, pay it forward. When I am able, I will try and educate others about my struggle and my recovery from severe illness and pain. Just have to get better first!!

This forum and the many kind people on here ARE my support group. I could not do this without that encouragement.

Blessings on the man who founded it and the people who give it life and sustain it.

This is not something to walk through alone!

[etta694]

Ah hear ya girl... amen!

(Here's an oximoron) Gluten intolerance makes us stick together!

[IrishHeart]

Ah hear ya girl... amen!

(Here's an oximoron) Gluten intolerance makes us stick together!

Oooh, this former English Prof. loves me a good oxymoron. A+ !! :lol:

[gailc]

Please don't diminish ALL self-diagnosed people.

I have not been diagnosed yet, results of the blood test should come in by Monday I imagine.The test already in show some anemia.

I AM self diagnosed as at least gluten intolerant. and diagnosed 'allergic' to wheat 50 years ago by an allergy doctor who had me do nothing about it. I never knew I had any symptoms.

I WILL be 100% compliant with being gluten free, I get cramps within an hour of eating gluten and I cannot hide the pain. I was gluten free for 6 weeks until a restaurant slipped some soy sauce into my salad. I was doubled over with cramps by the time I left the parking lot, cramps and other problems continued 2 1/2 WEEKS until I ate wheat for the blood tests.

I wanted to be diagnosed with celiac so I would have a little extra 'push' to be gluten free. When I started eating wheat to get the blood tests and had a bunch of allergic reactions(first time in my life from food) I decided 'never again'. I feel I also need an epi pen for screw ups in the future. Those reactions were in addition to the normal cramps and dozens of other reactions I get.

I am fortunate in that I find it easy to cook gluten free because I have never (except turkey gravy at thanksgiving)used gluten in cooking, same goes for lactose. I am also on a very low salt diet so using prepared foods in my cooking is out or at least minimal. Baking is another proposition. restaurants on the other hand may be impossible. Fortunately I live about a mile from Whole Foods and Trader Joe's. those took care of baked goods. I had never been to the Whole Foods store before. I'm now there a couple times a week. They even make a sandwich for me gluten free.

I felt really great on the gluten-free diet although I need to tweak the diet a little to get proper nutrition and 'cure' one more symptom.

gailc

[gailc]

Oh yeah, I forgot to mention I am on gluten for the biopsy but I cannot do it. I'll go off gluten again tomorrow and move up the date for the colonoscopy and endoscopy and probably blow off the biopsy. After reading the latest book it makes no difference in TREATMENT celiac and non-celiac. I did verify the immunization I got in December was for the correct pneumonia etc.

I ate my favorite gluten foods for the blood tests but they somehow didn't taste as good as I had remembered them. I even had 'goodbye' beers. I decided none of ttha food is worth cheating for.

gailc

[gailc]

(fell asleep at traffic lights in her car)

Ohhhhh I do that too. 'Seemed' to go away the two months gluten free, and now eating gluten ITS BAAAACK!!

gailc

[domesticactivist]

That support group sounds bad not because the people aren't celiac enough but because the person running it is an insensitive twit.

If you want to have a support group where people have to show their dr's signature to get in, I think you should start one.

You might be surprised to find out, though, that plenty of diagnosed celiacs don't take the diet seriously, and plenty of self-diagnosed or even undiagnosed people do. Also, lots of diagnosed celiacs have different manifestations of their situations and thresholds of noticeable contamination.

Support groups based on everyone having exactly the same situation, ideas, and feelings don't last, because inevitably there are differences of experience from person to person.

[domesticactivist]

BTW my son (whose mainstream dr's are 99% sure has celiac, but who has not been officially diagnosed because he refuses to put himself back in pain/the hospital to find out) takes this diet more seriously that any adult I've ever met outside our family.

Yesterday a friend came over to play. I told his parents to pack him a lunch since he doesn't like to eat our food. Since they've been over before and I'd told them to please not bring gluten into our home, I assumed they remembered. Instead, he had pasta salad and a sandwich on regular bread among other things! We got him out paper towels to eat on and made sure he washed his hands, wiped down everything he touched, etc. After lunch he put his cooler bag in the fridge. My son came and whispered to me "Mama, his bag is in our refrigerator, is that ok?"

My 10 year old is serious about being gluten-free because he DOES NOT LIKE FEELING AWFUL! He doesn't like bone pain, joint pain, not being able to think, having pain in his gut, and he wants to grow up to be big, etc. A person doesn't need the doctor to tell them to take that seriously.

[veruca]

I have been to a few different support group, round table and meetup events. I think it depends on the situation and goal of the program. If it's a gluten-free dinner then the goal is to eat some gluten-free safe food and feel normal. If it's a round table discussion you are looking for professional advice and the support group is there for support (not just a clever name).

I was recently diagnosed so personally I go to the meet-ups to get advice from others that have dealt with celiac disease for several years. They recommend the best brownie mixes and know the safe restaurants.

I have to admit that I have been put off by some of the self-diagnosed people. I wish they would identify themselves (and many do) as gluten-free but not celiac disease. This disease is no joke and you need proper medical care and follow up. There are many health issues associated with gluten that are not celiac disease so self-diagnosing is not a good idea. Self-diagnosing your children is even worse. It's a blood test and a biopsy and it's worth it. Obviously there are exceptions, but now that this is becoming a somewhat trendy diet it is more dangerous.

In blind studies many people who do NOT have celiac disease report health benefits of abstaining from gluten and this does not mean they have celiac disease. It is not recommended to cut something completely out of your diet unless medically necessary. Gluten containing breads and cereals are fortified with vitamins and minerals and if you have celiac disease it's something else to deal with, but do not put yourself through it if you don't absolutely need to do it.

[Skylark]

I have to admit that I have been put off by some of the self-diagnosed people. I wish they would identify themselves (and many do) as gluten-free but not celiac disease. This disease is no joke and you need proper medical care and follow up. There are many health issues associated with gluten that are not celiac disease so self-diagnosing is not a good idea. Self-diagnosing your children is even worse. It's a blood test and a biopsy and it's worth it. Obviously there are exceptions, but now that this is becoming a somewhat trendy diet it is more dangerous.

Are you aware that genetic gluten intolerance is a spectrum, with gluten enteropathy as only one of the many possible outcomes?

You are not giving enough legitimacy to self-diagnosis, and putting more emphasis on flawed diagnostic tools than good doctors. If I went to a celiac support group, I wouldn't consider myself somehow "non-celiac". My doctors consider me celiac because of the severity of my symptoms before I went off gluten. I have specifically been advised NOT to gluten challenge by three different doctors because it would make me too sick.

I saw a talk by Dr. Markku Mäki who views celiac as a spectrum; doctors in the US create a lot of confusion by insisting that celiac is limited to people with Marsh 3 biopsies and positive TTG. Those are diagnostic tools, not exclusionary devices.

People feel better off gluten in blinded studies because genetic gluten intolerance is more widespread than we have possibly imagined. A gluten-free diet is indeed medically necessary for people who are gluten intolerant. Didn't you learn in kindergarten not to eat things that make you sick?

[anabananakins]

I have to admit that I have been put off by some of the self-diagnosed people. I wish they would identify themselves (and many do) as gluten-free but not celiac disease. This disease is no joke and you need proper medical care and follow up. There are many health issues associated with gluten that are not celiac disease so self-diagnosing is not a good idea. Self-diagnosing your children is even worse. It's a blood test and a biopsy and it's worth it. Obviously there are exceptions, but now that this is becoming a somewhat trendy diet it is more dangerous.

I think that makes self-diagnosed people even more worthy of compassion, because due to the lack of meeting specific criteria to get the official label of "celiac", they won't get that follow up care. I tested negative (blood tests). I did not have the genes and so current wisdom says that there's no way I have celiac. Well, why does it make me so ill? Why did I have such a dramatic improvement to so many symptoms after I went gluten free? Why did my B12 levels double in the year since I went gluten free? There is so much doctors do not know about gluten intolerance and the effects gluten has on the human body. It is a spectrum. I'm not going to make myself sicker while medicine catches up to what I already know - you don't eat things that make you ill! It's bad enough dealing with the gluten eating masses, we don't need to have two classes of people within the gluten free world.

Most self-diagnosed people aren't following it as a trendy diet. They are self-diagnosed because doctors ran out of suggestions or dismissed their symptoms. The types of people who follow it as a trendy diet and merely "gluten light" and I doubt most would be bothering to attend support group meetings. There is absolutely no health benefit to eating gluten that you can't get from other foods. Our society has such an obsession with wheat, it's frightening.

[Hawthorn]

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.

Veeery broad generalisation here. How do you know that a person has doubts about it? Even if you DID know, this has absolutely nothing to do with diagnosis/non diagnosis because on my travels around the internet trying to find out every scrap of information I can, I have seen plenty of diagnosed Celiacs having doubts, cheating on the diet, and thinking that the tests are wrong.

self-diagnosed people do not feel a sense of purpose, this is psychological.

Again, wild generalisations here. Not every diagnosed celiac in the world is out there trying to spread the message, raise awareness or whatever.

If someone stops eating gluten, and feels better, then it's common sense surely that you don't eat it. If you do happen to eat some at a later date and have a nasty reaction then also common sense - you have a problem with gluten.

There is a lot of evidence out there to suggest that celiac symptoms are not always what doctors believe they should be.....diarrhoea, weight loss etc, so it is not thought of to test for it.

I believe a lot of people feel so bad, and the medical community have no idea what is wrong with them, so they look into things themselves - I did.

Not eating gluten cured me of mental health problems I had had for years. Nobody was more amazed than me...but I was absolutely thrilled that the longer I stayed off gluten, the better I felt. NOW if I get glutened I get the gi symptoms. Was I any less serious because I was self diagnosed? Nope, I don't believe so. I was actually appalled that nobody had suggested in all my time in and out of mental health care (hospital/psychologist/psychiatrist/drug changes) that food could be the problem. I am also appalled that many others could be suffering the same fate.

So, many of these self diagnosed people maybe cut out gluten in desperation, felt so much better, and couldn't face the idea of going back on the gluten to get a diagnosis.

Does this make them any less ill from a glutening than you? Perhaps they were just unlucky that the medical community did not allign their symptoms with possible celiacs.

Judge the person by their own individual merits, not by a sheet of paper that says Celiacs disease.

[come dance with me]

I do not have Coeliac disease but my little girl has it so I've found out so much about it and have been able to help many other people. Her friend's father was recently diagnosed with it so they came around to learn about what we cook and how we cook it and learnt all about cross contamination. We have no local support roup specifically for this where I live. I also do not have Autism but my father has and so does my brother and so does my daughter which means I know a lot about it from research without having it myself.

What I'm saying is that I'm sorry you had problems with that particular group but it has nothing to do with whether a person has it or not and everything to do with the amount they know about it.

[mysecretcurse]

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.

I agree with this. Not all of us had any sort of medical insurance or money. I was working part time minimum wage and barely surviving during the time I was figuring out my gluten intolerance (which based on the symptoms I am 99.99999% sure IS celiac disease). I trust my own process in figuring this out and my own intuition and I don't like the idea that someone like me wouldn't be welcome in a support group. I've been years healed off gluten now and will never have an "official" diagnosis because I can never eat gluten again without becoming severely ill.

That said, if you don't like the people at the support group, don't go. It just seems like a personality clash verses an issue of them not being officially diagnosed.

[mysecretcurse]

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

the disease seriously, because unconsciously the person

has doubts about it.

Okay, that just makes me mad, and is ABSOLUTELY untrue. You

cannot speak for others in this way. I almost DIED because

of my condition. I have no doubts.

[SilverSlipper]

Perhaps Veruca meant that she was put off by those who self-diagnose and treat the diet casually. I think we've all met people who behave in that fashion. However, I also know some medically diagnosed with celiac disease who also do this. My step-mother has DH from celiac disease and only follows the diet when the rashes are about to drive her crazy. Even when she cooks for our family, she messes things up (which is why we don't eat at their house anymore). The last incident involved a gluten free casserole that she crumbled six saltine crackers into to help thicken it (she used gluten free noodles and everything). She couldn't believe that I would refuse to let my daughter eat it over six crackers. I couldn't believe that anyone with knowledge of celiac disease would think a single saltine cracker was okay.

Gluten free diets are becoming trendy and some of those people are downright scary. They do not know specifics about the diet and I do feel misled when they announce they have celiac disease (because they assume if they can't tolerate gluten they must have it) and then offer my daughter a rice krispy treat (not gluten free) because regular cereal doesn't bother them so it shouldn't bother my daughter, right? (Yikes!)

But the people who treat this diet casually would never be found on this forum. Seriously. I trust the people here (diagnosis or not) because they do take it seriously. And how sad for my daughter when she meets gluten free friends who are allowed pizza hut pizza every Thursday night for their 'gluten day' before going back on a diet. Then I have to explain how there's really no such thing as a gluten day for her condition. Even the smallest amount of gluten makes her sick for nearly two weeks.

Just to make sure my point came across clearly - self-diagnosis is fine with me and I agree that they actually have a harder time of it (medically) than those with the gold standard of diagnosis. The people who drive me nuts are the ones who do not take the diet seriously and feel that others shouldn't have to as well. And they can be found with and without a medical diagnosis.

[serenityskyz]

Hi There, I'm totally new to writing on the boards but i've learned so much from reading and relating. I have been seeking a support group in my area for 4 months now and it turns out any attemt at "organizing" a group around here has fallen through. I wouldnt care at this point if it was undiagnosed people running it. I have my trusted sites for information on the "bare bones" of the disease but i am in desparate need of SUPPORT! An ear to voice my challenges and a hug from someone whos been there. I'm having a really hard time and a group of people who want to be united and care for each other sounds like heaven right now.

[anabananakins]

Hi There, I'm totally new to writing on the boards but i've learned so much from reading and relating. I have been seeking a support group in my area for 4 months now and it turns out any attemt at "organizing" a group around here has fallen through. I wouldnt care at this point if it was undiagnosed people running it. I have my trusted sites for information on the "bare bones" of the disease but i am in desparate need of SUPPORT! An ear to voice my challenges and a hug from someone whos been there. I'm having a really hard time and a group of people who want to be united and care for each other sounds like heaven right now.

*hugs*. Try and post here more, Serenityskyz It makes you feel much more part of the group if you post too (just reading can be quite lonely - I learned that on another board years ago), and this is definately the place to voice challenges, to ask questions, rant and rave on the bad days - anything you need. Not quite the same as in person, but maybe through here you'll find someone in your area.

All the best in your searching, and your recovery.

[serenityskyz]

Thanks for the virtual hugs. that was very kind. I will take your advice and post more, more likely to be successful in anything with support

[viviendoparajesus]

I do not have an official celiac's diagnosis because my doctor and I were not going to risk further exposure to gluten given that I had gluten intolerance, positive gene tests, and other positive tests I did not understand. I would appreciate someone stepping up to help offer support for those with celiac's. However, you are right in that there would definitely be a lot they might not know or understand. perhaps you could reach out to the person and give them an insiders viewpoint so they could be more effective and understanding. because it is different to go gluten-free by choice and be able to cheat or handle CC vs having celiac's where cheating and CC have huge repercussions. I think it sounds judgmental to say one is too negative it is a challenging disease to have given gluten is a staple or at least present in many diets throughout the world. Not sure why you lump celiac, gluten allergy, and mental illness together. for many people with gluten problems who were struggling with mental health problems they feel better getting rid of gluten since it can be a catalyst or trigger for the problems and being gluten-free can eliminate them. also not sure why you are scared of them. i could see being scared of the harm a well intentioned soul does but scared of them as a person. i know how i felt when doctors and family did not understand something was wrong and the hope i felt to get a diagnosis. i appreciate them trying to help even if they are self-diagnosised. though perhaps they need to change who they reach out to if they just want other self-diagnosed people. best wishes!