Alone On An Island

[MBK]

HI ya'll!

I am a newly diagnosed Celiac and even newer to the online chat forum for any reason. I guess it's because I work what feels like 24/7 on my computer and don't want to be on it when I'm supposed to be relaxing. However, after being diagnosed 2 weeks ago with celiac disease, I knew I had to get answers and better yet do lots of research.

My main frustration right now is the lack of direction, encouragement and education I am getting from my doctor. I feel completely thrown to the wolves. He literally called me to confirm I have celiac disease after all the testing and we had literally a 5 minute convo about the fact that there is no cure, I'm stuck with this and must change my diet. BLAH! What a useful, encouraging interaction with someone I pay lots of money to help me! And then when I took it upon myself to see a nutritionist for guideance, I found out they are SUPER costly and my insurance didn't cover it.

Luckily, odd but true, luckily my older sister was just diagnosed a little more than a month ago. She has fed me resources and research that she has come across already in her journey. I guess I felt compelled to join in on this forum to see if there was anyone else that has dealt with the same type of experience I have. I am a big girl and can figure this out and live a long, healthy life regardless, but I just feel like I have no real direction. I am confused on what research out there is not just based on the biographers own feelings but rather medical research, etc. And it seems as though there isn't a LOT of real good concrete findings to help us navagate through the recovery and treatment stages. Maybe I'm jaded but I feel that there is a direct link between the lack of overall research, help from doctors, aide in labeling and social distributing and the fact that you cannot cure this disease with MEDICATION!

How can WE be the voice and make that change?

Wow, I guess I had lots on my mind. Sorry for spilling it all!

[kareng]

I know how you feel? My OB/GYN insisted I go to the Primary care doc & get the blood test. They didn't want to do it but I said the GYN insisted. The nurse then called me to tell me it was psoitive. That's it. No make an appt to discuss, nothing. Would you call someone & tell them they have diabetes and then hang up?

You can find lots of good info here. Welcome.

[Gemini]

HI ya'll!

I am a newly diagnosed Celiac and even newer to the online chat forum for any reason. I guess it's because I work what feels like 24/7 on my computer and don't want to be on it when I'm supposed to be relaxing. However, after being diagnosed 2 weeks ago with celiac disease, I knew I had to get answers and better yet do lots of research.

My main frustration right now is the lack of direction, encouragement and education I am getting from my doctor. I feel completely thrown to the wolves. He literally called me to confirm I have celiac disease after all the testing and we had literally a 5 minute convo about the fact that there is no cure, I'm stuck with this and must change my diet. BLAH! What a useful, encouraging interaction with someone I pay lots of money to help me! And then when I took it upon myself to see a nutritionist for guideance, I found out they are SUPER costly and my insurance didn't cover it.

Luckily, odd but true, luckily my older sister was just diagnosed a little more than a month ago. She has fed me resources and research that she has come across already in her journey. I guess I felt compelled to join in on this forum to see if there was anyone else that has dealt with the same type of experience I have. I am a big girl and can figure this out and live a long, healthy life regardless, but I just feel like I have no real direction. I am confused on what research out there is not just based on the biographers own feelings but rather medical research, etc. And it seems as though there isn't a LOT of real good concrete findings to help us navagate through the recovery and treatment stages. Maybe I'm jaded but I feel that there is a direct link between the lack of overall research, help from doctors, aide in labeling and social distributing and the fact that you cannot cure this disease with MEDICATION!

How can WE be the voice and make that change?

Wow, I guess I had lots on my mind. Sorry for spilling it all!

While I can understand some of your frustration, you will never see this happen with the AMA unless they can make money off of a Celiac diagnosis. Medicine is a business and they only cater to diseases that make them tons of money from treatment....sad, but true. In many ways, I am happy for this because they nearly killed me while I tried to get some kind of a diagnosis as to why I was so sick all the time and I have little faith or trust in the medical establishment. All I know after 6 years gluten-free I learned on my own and I am better off for it. To be honest, even if there were a magic pill I would not use it expect to guard against CC while traveling, otherwise, I would maintain a strict gluten-free diet like I always do. Can't imagine ever eating wheat again and I am sure, once you are healed and feeling well again, you will feel the same way.

When it comes to food and diet, the AMA know nothing so that is why you are being treated this way...they just do not know how to address food issues. They only know how to treat with surgery or meds. Hang around here and ask questions....there are many experts in the field here and we will set you up better than any physician or dietician can!

[Igg postive]

MBK, Celiac disease or gluten intolerance is a relatively new area of diagnosis for a lot of doctors. It was not considered a grown ups disease till a few years ago. Many doctors are not trained or little training in gluten intolerance. Just look at the major celiac departments in the US, a lot have a specialists from Europe are heading them up. US medicine does not know how to follow up after a gluten intolerance diagnosis since there are no studies or guidelines. That is why I think there so many Gluten Intolerance groups springing up in the US. Many individuals want answers. Thank God for this web site. That is why your voice is so important. You have a family member and yourself to advocate for improved treatment by the US medical profession.

[GFinDC]

You can check out this thread on the gluten-free labeling summit next month in DC.

Gluten free labeling Summit

[sb2178]

pubmed is your basic medical search (for recent research articles)

pubmedcentral is the above, but only containing full text articles available to the public.

google scholar is great. Most of the really interesting research on the progress and development of non-celiac GS and celiac is coming out of Italy.

you're entirely correct; research funding is often driven by the potential to treat. there are many successful examples of advocacy to increase funding for certain types of research (breast cancer comes to mind), but i honestly can't think of any for celiac disease. The major "problem" there is that celiac is perfectly treatable for most people. Stick to the diet, you'll be fine. The selling point for funding "oh I can't have a good croissant" image does not compare to the "dying luekemia child" image. And it shouldn't. MS, lupus, alzheimer's, type one diabetes, rheumatoid arthritis... the list goes on, and we're mostly far less miserable and likely to die. You could argue that celiac has a known trigger, so solving celiac could lead to greater understanding of other autoimmune diseases, but that's a stretch at the moment.

We need better diagnosis far more than we need a cure. Some of that is simply getting doctors acclimated to the broad range of symptoms. Some of that is developing better tests. Why exactly do we depend on the equivalent of stage three cancer for a valid biopsy? Earlier tests can only be better.

What to do? Start a celiac walk, write articles for your local papers, letters to the editor, comment on blogs, write to your congress members, get on Oprah... Maye join one of the celiac organizations and push for more advocacy. Volunteer to head up a committee. Start a listserv... Want me to think of more suggestions?

I don't have time for it though, my advocacy lies elsewhere.

[T.H.]

My main frustration right now is the lack of direction, encouragement and education I am getting from my doctor. I feel completely thrown to the wolves.

That was my experience, too. I hunted around my town, found a GI who was recommended by my local celiac assocation, and he was MUCH better. He tests for vitamin deficiencies, checks for other conditions that often go along with the disease, for other food allergies, has an allergist who he works with closely - SUCH a different experience.

Oh, before I forget - one way to avoid the whole costly food issue is to go whole foods for a while - whole grains, veggies, fruits, meats - beans and nuts if they aren't processed with wheat. I just readjusted how I think of breakfast, especially. Like tomorrow, we are having a little lamb roast for breakfast with some veggies on the side. No more pancakes and toast, LOL.

Re: the research. I think one of the reasons there is so much of the 'feelings' results because the studies are often small, often flawed, and often ignore certain realities of we Celiacs.

For example, when my daughter and I get gluten accidentally, we get fevers. I didn't connect this to celiac disease until I started talking to other celiacs and found others with the same symptom. But medically, this is not a symptom of celiac disease. Same thing with having my senses go haywire - sounds are overly loud and irritating, light can be too bright, touch is more irritating or painful. Even taste is off - I never realized how many things tasted too bitter or too sour - and now the same thing tastes fine. My husband is eating the same thing, and it tastes the same to him now as it did then. Weird stuff!

There are a couple flaws that I see most with the research - although it can still be useful.

1. Almost all research only looks at gut damage. Whether it is researching safe gluten levels, drug therapies, or refractory celiac disease. However, some celiacs have neurological damage that involve separate antibodies developed in contact with gluten (some studies have detected these). Many of us have joint pain, headaches, and other issues within minutes of eating gluten, not conditions that would be caused by nutritional deficiencies. It makes me understandably nervous that these other affects are caused by gluten, but aren't being studies at all. I'd like to know what's going on with these, ya know?

2. unintentional bias of participants - more gluten tolerant celiacs tend to be in studies and may skew the results. When the level of gluten for 'gluten free' products was first chosen, 20ppm was the standard because we couldn't test any lower than that. Then when studies were done to see how much gluten could be eaten safely, the researchers typically only take celiacs who have healed. So...we have healed celiacs who are eating 20ppm of gluten or less, entering a study to see how much gluten they can eat and stay safe and healthy, and they find out that they can have 20ppm or less. You can see the problem.

There's still been a lot of interesting research lately, but much of it is within the last few years, and so other celiacs will often be more on top of it than doctors who don't specialize in this, honestly.

And it seems as though there isn't a LOT of real good concrete findings to help us navagate through the recovery and treatment stages.

Nope, there really aren't. Very frustrating. Not much money for funding, not so many celiacs who volunteer, either. :-(

shauna