50 replies to this topic

[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!

[jeanzdyn]

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.

You are right --everyone is different and there are some varying symptoms when it comes to Celiac Disease.

As a person who has been without health insurance most of my life I have had to try to figure out how to help myself with medical issues. I was forced to read and learn about health issues and research my symptoms. I did not have much knowledge of Celiac Disease when I had chronic diarrhea in the early 1990's -- no one at that time knew much about Celiac's Disease. But I was able to figure out a few things on my own, like acidophilus helped me to some extent, and if I ate less bread I did better too. Because I stopped eating bread my symptoms abated and I never really gave that much thought. I was just happy that the diarrhea went away.

I do now have a medical diagnosis of Celiac Disease, but I definitely understand that there are people who try going gluten-free, find relief and might come to this forum to find others with common problems. This forum is a resource for us all.
I think that informed people, people who inform themselves naturally find forums like this because we are looking for people with a common ground to discuss our condition or diagnosis, hopefully to help each other.