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STILL waiting on referral to the GI

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Hello all- thanks so much for all the kind words on my first post, and hopefully I’m putting this in the right forum!

I got my blood work back mid December, and still have not gotten the proper referral from my doctor to proceed with more testing. At first I was going wild eating all the gluten, because I figured I might as well say a proper goodbye, but my symptoms have gotten SO. MUCH. WORSE. I barely ever eat more than one meal a day lately because I just have no appetite. My face, knees and hands are flaring up with eczema, and I just have feel so blah.

I think what’s toughest is just being in this mental limbo. I was thinking of starting something like a whole 30 or Fasano diet now (well, with the exception of including a “dose” of gluten a day). Is there any point? Do you think eating less gluten, but still eating a small amount would make a difference?

Also does anyone have an idea of what the cost would be for me to just skip insurance and pay out of pocket? I pay for insurance but I swear it’s such a waste of money given the hoops you have to jump through to get anything covered :-/


thanks in in advance for any feedback! I really do feel like this is the first place I’ve been listened to since starting this process.

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What? Have you called your doctor?  Maybe, the referral slipped though the cracks.   Was your insurance even contacted?  Then follow-up with an email and if you do not get a response in a few days, then send a registered letter.  Either a careless mistake has been make or your doctor is grossly incompetent.  You have rights!  

Be nice.  State that you had positives on the celiac blood tests and that all leading celiac centers and the American GI Association recommend that the next step be an endoscopy to confirm the diagnosis.  Attach links or print a document.  Doctors hate setting themselves up for a lawsuit.  Once it is in writing, they must (maybe not if they are idiots) take action.  

If your insurance is balking (it is all about the money sometimes), do the same thing.  Document so that you can go to your state’s insurance commissioner and file a grievance.  Then consider contacting the medical board.  

Keep all health records for the rest of your life.  

Heck, when I want something from my doctors, I ask them in writing.  “Can you order a antibodies test for celiac disease?  I think I am getting a hidden gluten exposure and I have these symptoms.....” or “It’s been Two years since my last bone scan.”

I have NEVER been denied any request.  

An endoscopy is $1500 and up.  Hard to say, as there  as so many factors to consider.    But a GI consult might be worth spending $250.  It might get your insurance or provider to move faster and if you are building your case for a lawsuit, that might be considered money well spent.  

Skip the Fasano diet.  Just a tiny amount of gluten is going to set off an antibody reaction.  You can slow it down to a 1/2 slice of bread per day (or equivalent) based on the University of Chicago’s recommendation.  That might reduce symptoms or not....

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@cyclinglady thanks for the reply, doctor finally called me back shortly after I posted- they think the doctor has the results for review, but they’re changing locations next month and everything’s a mess. 

When you say put it in writing- do you email your doctor, or physically send a letter? My docs office said they don’t have a secure email and I don’t have a fax..

I also did a bit more research on the endoscopy and will definitely be making sure it’s covered. I was spoiled with a great plan growing up and now that I’m on my own I’ve got a far worse one. Even with the referral I’ve heard people not getting covered because they didn’t make enough effort to “shop around.” 

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Shopping for health insurance can be a nightmare, but it was way worse prior to the National Healthcare Act.  It was pretty much impossible to compare plans back then.  It is still tough though.  We are self employed and have been buying insurance for 20 years.  

If your doctor does not have a secure email system, then send it though the snail mail.  It is legal and safe and it is a federal offense to tamper with mail.  You can also go to a UPS store or Kinkos and have them fax your letter for a small fee.    Depending on the letter content, I would send it registered mail.   

It does sound like your doctor’s office made an honest mistake.  Be sure to follow-up in a few days.  They should have your results at the top of his in-basket!  




Edited by cyclinglady

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