50 replies to this topic

[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+ !!

[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]

[quote name='beefree11' timestamp='1294162380' post='665249']
(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.