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Hi everyone,

My name is Carol. I'm 31 and I've been struggling with gi symptoms since I was very young. I had my gallbladder removed in 2003 due to chronic vomiting. After the surgery I was told that my gallbladder was seriously diseased and definitely needed to come out. Shortly after that the vomiting returned. I was also diagnosed with Sarcoidosis around that time. Since then the vomiting and diarrhea have continued to get worse. Lately I can barely hold anything down and I'm nauseated and have abdominal pain all the time. I went to see the gi yesterday and had the blood tests done right after. Now I'm just waiting. I'll be completely shocked if I don't have celiac disease. I get hot/cold flashes, nerve tingling and pain in my leg, and I have lots of problems with my teeth.

I've been accused of having bulimia due to the vomiting being so bad. If I was bulimic I probably wouldn't be laying on the bathroom floor praying to God for a diagnosis when things get really bad. That's happened many times, when I've been too weak and unsteady to stand up.

I'm actually hoping and praying for a diagnosis of celiac disease. At least then I can start trying to heal the damage. I've already tried some of the gluten-free foods so I would know what to expect. Of course, being a fat girl, I had to go right for the Kinnikinnick brownies lol. They are awesome :D

Sorry this got so long. I just needed to tell this stuff to people who understand.

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I can relate to you hoping celiac disease is the cause of your symptoms. I just had the test 2 days ago and started a gluten-free right after. I've been through countless testing with no results and after awhile you start hoping the next test will comfirm something, even if serious, just to get a handle on your agony.

I intend to stay gluten-free even if the blood test comes back negative. From what I gather from the helpful people here, the test aren't always that reliable.

Best of luck. :)

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Did you get an endoscopy? With symptoms that bad, I would say you need one and soon.

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Welcome!

Make sure that you don't go gluten free before an endoscopy/biopsy or you may get false negative results.

Sorry to hear you have been so sick.

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Thanks for the replies.

The last time I had an endo was before my gallbladder surgery in 03. At that time I was told that I had a hiatal hernia, gerd, and gastritis. Thr gi said that after my bloodwork comes back we'll decide on what scopes to schedule. I'm so sick of feeling like this all the time. It's also a challenge for me at work. I'm a police dispatcher on the midnight shift. It's a small department so I work alone and I'm often the only one in the building (aside from the occasional prisoner). That means I can't leave my desk to run to the bathroom without calling a patrol in off the road. That's not always possible, if they're all tied up on calls. As most people here already know, when the urge hits, there's no stopping it. I end up having to grab a portable radio, a pad and pen and run to the bathroom as quickly as possible. It would be so nice to live a normal, healthy, life. I'm not sure I'd know how to deal with it though. lol

I just hope the results will be in soon. I'm guessing they'll be held up until Tue or Wed because of the holiday weekend. I hate waiting!!! :angry:

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    • Welcome!   I am confused.  Did you have a negative celiac blood test or a negative biopsy (taken via endoscopy)?
    • In addition to cheese made with yogurt, hard cheeses like cheddar, romano, parmesaen etc are also going to be lactose free. Eggs are also a good source of protein if you eat them. Do bear in mind that celiac can really mess with your head. It can cause depression and anxiety that can get worse for a short time when you first go gluten free. your life is not over by any means. The reason why you see more people on boards and in forums that are having problems is because most when they heal go on with their lives. We don't hear from them with the exception of a few that stick around to help people that are still struggling. Hang in there it will get better.
    • You are sick.  Depression and anxiety are symtoms of celiac disease (and many other illnesses).  It is hard now to look forward and imagine a great life, but it is possible.  I think you are already in the thick of the grieving process right now.  Reaching out to this forum can be very healing emotional (it is not just all common sense advice about gluten-free food!).  I did not say not to exercise, but to do it gently.  This is not the time to train for a marathon or triathlon!   The SCD Lifestyle site....it is all about the money.  Seriously.  They are selling a book. 
    • They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)
    • Gracey, It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.   So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.   Hugs!  
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