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RetroGirlChicago

New To This And Need Advice, Thanks!

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Trying not to make the post too long but want to give a quick background...I am 37 years old and live in the South Suburbs of Chicago. On May 5th I had an endo because I had been vomiting 2-3 times a week for about a year, have had reflux for many years, tried to brush it off. The gastro said I have a hiatial hernia and ulcers from the vomiting. Two weeks later the nurse called and said I needed to go for more blood tests because the biopsies came back positive for Celiac. I went for the tests and was told by the nurse 4 weeks ago that the blood tests were positive, to make a follow up appt and to "Look it up online." (The appt they gave me was 5 weeks from then.)

I have done a lot of research and haven't intentionally eaten anything with gluten since then. In my research, I found out that the University of Chicago Hospitals has a Celiac Disease Center and made an appointment with one of their doctors for August. When talking to one of my sisters about it, she said "Don't you think that's for people with more serious problems?'" Meaning, I guess that since I didn't have any of the "classic" symptoms that there's no point in going. Since I've been gluten-free, my joint problems that I've had for 4 years are gone and I haven't vomited. I feel like I will get no help or guidance from the gastro dr., he was 1 1/2 late for my 1st appt and 2 1/2 hrs late for the endo, I didn't even see him before the procedure. Also my mom is a nurse and can't believe that his nurse basically told me that I have a chronic disease and to look it up. The advice I need is what would you do? Would you keep the appt at the Celiac Disease Center? I honestly am surprised at how well I've taken the dx, I've been cooking 95% of my food at home and found a lot of stores in my area with gluten-free stuff. I just would like to know that what I'm doing is enough and that the info that I have is right. The dr and the center are in my insurance plan and with all the appts and procedures so far this year I've gone over my high deductible anyway. I wanted to see a nutritionist but there are none in my plan. What would you do?

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I Would go to the appointment.

They have an email address on their site. Email and tell them this but make it really brief. Ask who you should see. Bring your positive blood work , procedure report & path report. They may want to change the focus of your appt if they know you are already diagnosed.

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On May 5th I had an endo because I had been vomiting 2-3 times a week for about a year, have had reflux for many years, tried to brush it off. The gastro said I have a hiatial hernia and ulcers from the vomiting.

When talking to one of my sisters about it, she said "Don't you think that's for people with more serious problems?'" Meaning, I guess that since I didn't have any of the "classic" symptoms that there's no point in going.

What would you do?

Vomiting 2-3 times a week for a year is a serious problem. I know it's a pain but I would probably keep the follow up as well. It's few hours gamble for some possibly useful info.

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Keep the appointment. I am in the Chicago West Suburbs and was thinking of going to U of C but my insurance is nil. I have emailed them and they are super helpful. Definitely take advantage of the center and keep us posted. Also, you need to be an advocate for yourself...try not to listen to naysayers who cloud what you know you need to do for your own health. Good Luck.

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