Help...

[nothing but nicole]

Ok, so I posted something before about diagnosis. Now I need some more advice. I will go over everything again to just clarify. I have had an upper endoscopy with biopsy, however I do not know what the biopsy results were since they took them to test for bacteria that could have caused the ulcer that I was told that I have. At the same time they did a flexible sigmoidoscopy (lower colonoscopy) and told me that I have hemorrhoids and my colon basically looks like bubble wrap. Again they did not do a biopsy of anything there but the papers I have say that there is abnormal mucuos in my lower intestinal tract. I have had my vitamin levels ran and the dr send me to have the IBD serology blood test ran, apparently this can differentiate between IBD and celiac disease? My doctor based him telling me that he thinks that I have celiac on the results of the upper endoscopy and flexible sigmoidoscopy, however I have to have a full colonoscopy tomorrow (not enjoying the prep mind you). I have not heard anything from him about the blood tests and I am slightly worried about misdiagnosis. I do have family history though, I have an older sister that was diagnosed about two years ago, however she has down syndrome and I was reading on one of the many websites about celiac that the disease is common amongst people with down syndrome and autism. My other sister's doctor literally laughed at her when she called to ask for genetic testing. How horrible most doctors can be. I am fairly young, live with just my sister almost 2000 miles away from my parents so my mom cant really be here to hold my hand. I have no idea what to ask the doctor, what my next steps are if they find I don't have Crohns (that is why they are doing the colonoscopy) or Celiac. I know I need to ask the doctor about my blood tests and biopsies but I dont really know how and I worry that the doctor will have no answers for me. I feel like he is very through as he sent me for all the blood tests, sent me to have a bone scan and referred me to a dermatologist. Since he told me that I have been going slightly crazy and eating everything that I love that I know will never be the same and have been feeling horrible health wise. I do have a lot of the symptoms, Im just scared there are no answers. My sister doesnt even try to understand and tells me that going gluten free should be easy since she can do it. She went on the south beach diet and thinks that is going gluten free. I am really scared and I know that this is a huge life changing disease. Can anyone offer any advice on how to approach not only the doctors but also my family.

Anything would be greatly appreciated.

[Jestgar]

I'll hold your hand. Take some deep breaths and calm down. Now, repeat after me: I am in control of my health.

Ok, now that you're a little calmer. Crohn's is a real diagnosis. If that's the definitive diagnosis, then you do have it. But you could also have Celiac. You have a sibling with Celiac. This increases your chances of having the disease.

Yes, this is a life-changing disease, but the most amazing part of the change is how well you feel. It's also a diet-changing disease. This is tricky, but like anything, it gets easier with practice.

And this is a disease that YOU have control of. If the doctors give you no answers, you can change your diet yourself and decide if it makes you better.

And finally, you can't change other people. If you find that the gluten free diet makes you feel better you can point this out to other family members, but only they can decide to try it for themselves.

Are you feeling any better?

[nothing but nicole]

I'll hold your hand. Take some deep breaths and calm down. Now, repeat after me: I am in control of my health.

Ok, now that you're a little calmer. Crohn's is a real diagnosis. If that's the definitive diagnosis, then you do have it. But you could also have Celiac. You have a sibling with Celiac. This increases your chances of having the disease.

Yes, this is a life-changing disease, but the most amazing part of the change is how well you feel. It's also a diet-changing disease. This is tricky, but like anything, it gets easier with practice.

And this is a disease that YOU have control of. If the doctors give you no answers, you can change your diet yourself and decide if it makes you better.

And finally, you can't change other people. If you find that the gluten free diet makes you feel better you can point this out to other family members, but only they can decide to try it for themselves.

Are you feeling any better?

I know that both diseases are very real and I could possibly be diagnosed with either. I am glad that my doctor is doing the testing that he is to make sure that he doesnt misdiagnose me. I am just to the point where I am so confused. My doctor also sent me to a dietitian and she not only gave me material but also said to me not to start a gluten free diet until I am fully diagnosed. Also on my previous posts I have recieved almost the same response saying that the diet is very taxing and expensive. I really dont know how to go about changing everything. I am the kind of person that in some ways will always need my hand held. I am scared that after the colonoscopy tomorrow I will be no closer to finding answers than I was the day I started having problems. I have been having some issues for a long time but they were always diagnosed as something else. I just think of the things I cant have any more if I am dianosed celiac and I want to cry. I know I need to look at the positive light and think about all the things I love that I can still have but it is really hard to look at things that way. I have been reading some of the posts from other people and am terrified about what I have to face for the rest of my life.

I cant ever remember to ask the doctor the necessary questions when I am in the office and by the time I leave I dont really feel it is worth asking anything because I am just going to play phone tag with his nurse for a couple days. I dont know what to ask the doctor, I wonder if he has any real evidence to base his suspicions on. I know that my symptoms are evidence but why didnt he have the difinitve answer after the last procedure. For me it has really been one doctor after another for my whole life. I am done, I am sick of everytime I go something else is wrong. And I am alone in a city where I have no idea what doctors are truely good and which ones are not.

Im sorry I really shouldnt be freaking out, I feel so lost.

[Jestgar]

I really will be alright. Feeling bad sucks, and it seems to make everything that much harder. It is overwhelming, but truly, it does get easier. I know that what you want is to just KNOW so you can stop wondering and start doing something, but hang in there for now.

If you are willing to keep eating gluten until the testing is finished then do keep stuffing yourself with anything you want. Just try to change your approach while your eating it. Instead of thinking "this is the last time I'll ever have this" try thinking "how can I make this gluten free?"

Spend some time in the recipe section and you'll find that everyone has the same question - how can I make (or buy) what I want? There is a way.

Take some time now to write down your questions so you're prepared when you go to see the doctor. If you feel that your questions aren't addressed remember that it's his failing, not yours.

You can do this.

[PeggyV]

Poor thing!

I know it is hard to be going through this alone, but what ever the outcome you will be able to deal with it. Believe in yourself, I am sure there is strenght within you havent tapped.

I have been on a glutten free diet for 4 months. My daughter who is 23 started hers 5 months ago. It really is not as expensive as you would think. It can be a little inconvienent, but with a little organization it isnt bad. It sounds harder then it is.

I make most of my lunches now to take to work. I make larger batches of soup, cassaroles, etc and freeze. If I eat out I eat salad bars for the most part or hamburger patties. It does make you eat healthier, but in the long run that is good. I am sure I appreciate the benefits more at 50 then I would have at 24.....

There are a lot of nice people on this site, with years of experience. They have been very helpful and supportive of my questions and sometimes just when I need to vent my frustration.

Just hang in there, it will get better.