Do They Exist?

[Mey Marie]

When I was diagnosed with Celiac Disease, My GI Dr. told me to go on line and learn all about the disease. He had nothing to tell me other then to not eat gluten and that I could learn about it all on line.

Is this what they all do?

[kaki-clam]

My GI doctor said he had some great paperwork for me, I had to pick it up, which meant taking time off from work that I couldn't get. I asked him to mail it to me, to which he replied " I don't have an envelope big enough". Seriously??? I did e-mail him a few questions, the reply was, talk to you primary doctor, so when I asked him, he told me to ask the GI doctor....finally, I found a holistic doctor, with a DO, who has been a godsend! He got me on track with some great products and vitamins..and the fact that he is super sexy doesn't hurt things either! I have found that without this website, I wouldn't have survived the first three months of my diagnosis..so, chin up, and even if you don't believe it now, things will get better...find a good doctor!!!

[mommida]

Our family's diagnoses was over 5 years ago. We had an appointment with the nutritionist at a hospital in the Detroit area. The nutrionist called and cancelled the appointment. She told us to by Dana Korn's book, Kid's with Celiac Disease, and search the internet.

I suggest the book for parents of newly diagnosed kids and this site has been great! It is an international support group 24 hours a day 7 days a week every day of the year.

[DANIEL*S AMBER]

Yes that is all my GI Dr. told me to do too. i couldnt believe that the dr. just told me that . my husband and i were in shock and at that time realized anybody can be a dr. but seriously thanks to this website i have learned so much and that is my best advise to you is to keep yourself plugged in to this site as much as possible...

[mushroom]

  On 4/29/2010 at 5:56 AM, DANIEL*S AMBER said:

Yes that is all my GI Dr. told me to do too. i couldnt believe that the dr. just told me that . my husband and i were in shock and at that time realized anybody can be a dr. but seriously thanks to this website i have learned so much and that is my best advise to you is to keep yourself plugged in to this site as much as possible...

That is both amazing and rewarding to hear, that we are a beacon of light shining in the gluten free wildnerness for those who have just entered it Certainly it was the same for me two and a half years ago when I self-diagnosed because I couldn't even get someone to suggest testing me and I was just stumbling around in the dark. How far we come....

Please do use this resource to its fullest. Every one of us is only too willing to share what we know and help you through your darkest moments We may not have medical credentials (well, some of us do but most are self-taught) but the medical professionals, I think, realize that they are taught precious little about celiac disease in their medical training, and those who have been through it probably know the ins and outs better than they do. Thanks for the kudos

Just a little lightheartedness - What do you call a doctor who graduated bottom of his medical school class??? Answer: Doctor! Not to denigrate the medical profession - they can't be expected to know everything! and we are all much more intimately involved with this subject than they are.

[tarnalberry]

The details of implementing a gluten free diet are beyond the scope of practice for most physicians. It doesn't necessarily mean that he/she is a bad doctor, but that they don't have the time or specialized knowledge (which would be changing even more frequently than everything else they have to know) to be your nutritional counselor. Honestly, I'd say this doc was doing exactly the right thing - you're going to get more up-to-date and accurate information on this one on the internet. Not true for lots of things, and it takes longer than someone giving you a single answer or piece of paper, but the gluten free diet (explained in full context and culture) is far more complicated than a single piece of paper and 10 minutes with your doctor.

[ellie-lynn]

  On 4/19/2010 at 1:06 AM, Mey Marie said:

When I was diagnosed with Celiac Disease, My GI Dr. told me to go on line and learn all about the disease. He had nothing to tell me other then to not eat gluten and that I could learn about it all on line.

Is this what they all do?

I hope not! I think part of the problem is that many primary care doctors see celiac as something a specialist should deal with, but most GI doctors don't have much training to deal with celiac. Most GI research focuses on other kinds of gastrointestinal issues, and since the treatment for celiac is food-based, there's not much money flowing in from drug companies to fuel research and attention to the problem.

My GI doctor told me some basic stuff (though by the time I was diagnosed, I probably knew more than she did about the gluten-free diet), and then referred me to a nutritionist. The nutritionist was good and had worked with other celiac patients before, but her focus was really more about balanced diet and identifying possible gaps in terms of vitamins and minerals (e.g., she had me get bloodwork to check my zinc and magnesium levels). On the other hand, stuff like allergies and food sensitivities are not really her area. I'm ok with the fact that I have to do some reading/research, but I think it's really important to have a doc who will work with you and help troubleshoot. Good luck!