[googley]

I have a question. I was diagnosed with celiac disease a couple of months ago. The doctor did the tests and then called me (after I called since it had been longer than it should have been) and told me I had it. That was the extent of the process. I was then left to pretty much figure it out on my own. The only direct treatment is to change what I eat, so not necessairly anything she could do. But I feel like I was left to do it on my own. They refered to a nutritionist, but when I went to see her I knew more than she did. I felt like I was just left with no help. Is this how people are usually diagnosed with life changing disorders? Or do they usually help? Is this usual? I just feel like I was totally screwed over. No one ever helps when I need it.

[anna342]

I don't know about allergies, but I think they should be treated better than that. In my case I had skin allergy tests, but as nothing came back they told me there was nothing else they'd do. I'd already been diagnosed with IBS but just told to eat healthily, do exercise and get on with it. In the end I did my own exclusion diet. I've come to the conclusion that gluten and dairy products trigger my IBS, and from that the dr has said I'm intolerant. I felt like no one had helped me, but at least in my case it's not an allergy.

Unfortunatly if doctors are going to be like that it makes it necessary for us to sort it out ourselves. There is loads of information out there about a gluten free diet. I'm pretty sure that's all you have to do to control it, althoguh I could be wrong. Do some searches on the internet, and get used to thinking about what foods are off limits. There are loads of alternatives out there, and recipes for gluten free stuff. It's not that hard if you're willing to try new things and make the effort to cook.

[pegasus]

I don't think you should have been just left to it like that. Celiac disease is a serious thing to get used to. Everything you eat must be gluten free. Maybe you could see if there is a support group near you and go back to your Doctor if you are having problems.

Hugs

[little*rhino]

yeah googley... that's exactly how it happens. In fact, getting a dx that is firm on something is often a battle, much less informative.

trust me... what you just described is more or less what happened when i was dx'd with a tumor in my thyroid. i expected someone to tell me what was next or what to do or anything... but nope. i had to push and ask and read.

it's been a long haul bc i have multiple dx's and it's more or less been the same. i'm waiting now to find out if my aorta is at risk of just exploding with this syndrome i have... whether the answer is yes or no, i don't expect any support or major help in finding out what to do next.

your best bets are finding others with the illness, and read read read... beware of some stuff nonmedical people post online as nonsense spreads more quickly than fact. You might want to buy yourself a medical dictionary and then start reading the medical journals at a larger library.

best of luck

[googley]

Thank you all for your responses. It is not that I don't know how to get information I need through reading. My PCP gave me information to read but then said that if I read it I would know everything that she did about the disorder. I know how to keep gluten out of my diet. I just wanted someone to care. And no one seemed to. It makes me so mad.

[ECHOES]

googley, there is a active board on another site where this is discussed along with other GI issues. PM me if you would like to know the site

[lynn P.]

I agree it would have been much nicer if you were called in to discuss the tests results in a caring atmosphere. You should have been given moral support since this is a life altering disease. I understand you wish the information was delivered in a more compassionate and caring way. It's one thing to just give out the information compared to compassionately delivering it. You wanted understanding not just information and goodbye. Best of luck.

[Amanda_1981]

googley, I'm so sorry to hear that your doctor did not give you any information on your condition. The same thing happened to me when I was told last year I had a defficiency to vitamin b12. All my doctor said was "you need shots once a week for awhile and then once a month" and did not tell me anything about it. It was only later when I talked to my cousin, who is in the medical profession, who told me that what I have is called "precicious anemia" and that I need those shots for the rest of my life. My doctor never even told me the seriousness of it or even the name of it! I later asked her if that's what I have and all she said was 'yeah but it's ok because the shots will treat you for it'. I wish doctors would be more informative with their patients and i'm sorry the same thing hapened to you. *hugs*