Forgive me celiacs for I have sinned. It has been two weeks since my last celiac rant.
Yes…I am a bit backed up on the rants. For those who have sent one to me and I have not published, my apologies. It’s been a busy stretch at the Dude Ranch and I’ll do my best to catch up on things in the next week or so.
Today’s rant deals with one of our favorite topics: idiot doctors.
The woman below, after a whole lot of doctor frustrations, was finally diagnosed with celiac disease and sent on her merry way. No recommended follow-up visits. No recommended dietitian. Just a diagnosis and good-bye.
I think a lot of us have been there and I find it fascinating in a real disturbing way.
The cynical side of me says that doctors don’t care much about celiac disease because once the diagnosis is made, there is no money in it for them. There is no medicine; no need for monthly visits; no need to get pharma involved.
Do you agree?
Here’s her story.
In May 2011, I was diagnosed as severely anemic. My levels were almost non-existent. Immediately my GP stated that I needed to get weekly iron injections. So as a good patient does, I follow her advice. Each week I would ask what would cause me to be anemic as I eat everything in my diet and I had a hysterectomy in 2008. I again asked about celiac. She again advised that I did not have it. She suggested that if I did not believe her that I could always eliminate wheat from my diet and see how I feel. This was not something that I was prepared to do.
I had both an endoscopy and colonoscopy completed after months of reminding her that I should not be losing blood and the surgeon advised me that he took three biopsies and would see me back in his office. At our next appointment, he told me everything came back clear other than the obviously signs of GERD and he changed my stomach pill.
I asked if he tested for celiac. He did not. He advised me that it is a different test and that he wasn’t aware that I wanted tested for that. He suggested that I go gluten free for 2 weeks and if I noticed that I was feeling better, to return to him and that he would order a blood test.
I had my weekly appointment with my GP (6+ months of weekly shots) and I had made the choice that I was done with the shots. They were painful, time consuming and just were not making a difference. So when I advised her that I was done, I also advised her that I wanted to be tested for celiac on my next set of bloodwork. She insisted that she has sent over 100 patients for the test and that they all come back negative. She also told me that they were expensive and unnecessary. I let her rant, and reminded her to add it to the requisition.
The next week when I went in for the results, she was astonished!! I think it was the TTG test that she ordered and she explained that basically anything over 12 would be positive for celiac. My results came back as greater than 100. That was after being gluten free for 2 weeks. She said she had never seen anything like it.
This was on a Wednesday. I was leaving for Cuba on Friday for a much needed week of vacation. She said that I was to go gluten free immediately. I told her that I had been requesting this test for 14 months and she wasn’t concerned about it then, that I would change my diet upon my return from my vacation.
She continued to tell me that I could not make that choice. I asked her what happens now. She said you go and live a gluten free life. I said what about follow up? A referral to a dietician? Another scope? She told me to Google it. She said all of the information that I needed was on the internet. See you in a year!!
So here’s my frustration….everything I read on the internet says get a biopsy. Some sites say this food is ok, other sites say it’s not. Most people know immediately when they have been glutened. I don’t. I don’t know which symptoms were celiac related and which weren’t.
I have no idea what to do. Where to start. When I’ve gone wrong.
So when someone says to me, “Is this ok?”, my response is, “I have no idea”.
I have done some Googling and found some really good sites. I have joined the Canadian Celiac Association and received a little bible in the mail about what’s allowed and what’s not allowed.
But frankly, I feel that I need more. I have made an appointment with my GP for tomorrow…I would like to have my iron retested and I want a referral to a specialist. I found one not far away that is an allergist/immunologist and his office staff advised that they deal with celiac. I am hoping to have better luck and support there.
Does anyone have any sort of follow up done or is it just a diagnoses and then out the door?
I was anemic and receiving weekly iron shots. Then I get diagnosed as celiac and I am no longer of concern?
Am I missing something?
Thanks for letting me rant!!
Need to Vent?
I hate celiac. You hate celiac. We all hate celiac.
With all that pent up anger, people need a place to vent.
Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away.
There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner. Positive energy brings positive results.
Don’t you feel better already??