Ten years later, it’s the same game for this celiac
Ten years ago, it was okay when no one knew about celiac disease. The medical community labeled it rare. The general populace had never heard of it. People didn’t eat gluten-free. Shit, people didn’t even know what gluten was.
I was diagnosed in 2003, after 11 years with mysterious symptoms ranging from radical weight-loss to chronic fatigue. It ended with a nine-day hospital stay when I dropped to 96 pounds. At first, doctors told me it was all in my head. I just needed antidepressants. Eventually, they did a biopsy to confirm celiac – but they never apologized.
Back then, I did my grocery shopping with my cell phone so I could call the 800 numbers on the labels. (Why buy it if I can’t eat it?) More often than not, the question “Does this have gluten in it?” was met with “What’s gluten?”
But now, when federal law requires food labeling with or without gluten —
When people routinely eat gluten-free (even if it’s because they mistakenly think it’s healthier) —
When everyone and their mother knows someone who has celiac or is gluten intolerant —
There’s just no fucking excuse for your gastroenterologist to not understand why you need gluten-free medication.
And yet . . .
Wednesday, I got a generic substitute medication from my mail-order pharmacy that my doctor okayed. This is a new generic drug, released in late November 2013, to replace a brand name medication I had been taking for more than a year. Naturally, I need to make sure it’s also gluten-free.
When I eat gluten, I alternate between the bed and the bathroom for several days. Having an autoimmune disease that almost no one knew about when I was diagnosed, and that makes eating a minefield, absolutely sucks. But it’s doable once you get used to it.
So I called the GI doctor.
“Hi, I got a generic substitute medication in the mail and I have celiac. Is this generic gluten free?”
They don’t know. I should call the manufacturer or the pharmacy.
“If you don’t know if it’s gluten-free, why did you okay it with the pharmacy?” I ask.
A nurse will have to call me back.
Nurse Robin rings me later, saying she called the makers of the brand name and they say there’s no gluten.
“I know the brand name has no gluten. I was taking the brand name up ’til now. But this is the generic. Why would the brand name people know if the generic is gluten-free? Don’t I have to call the generic manufacturer?”
She says it’s usually the same company. (It isn’t.) But she will call me back with the number so I can call myself.
When Nurse Robin calls back, it’s to tell me she called my mail-order pharmacy and someone named Duane says no gluten is in the generic. She didn’t call the generic manufacturer (how could she? several exist and we don’t know which one made this bottle) and she doesn’t give me the number.
“Okay, as long as it’s labeled, then I can take it,” I say.
“Well, I can’t say if it’s labeled gluten-free,” she says. “I’m just telling you he said there’s no gluten. If you’re really nervous about taking it, we can send a new prescription and require no generic substitution.”
But, she says, I will have to pay full price, which is more than $500, because the pharmacy tech said it has no gluten.
I explain this is serious. I will be violently ill if I ingest even a little bit of gluten. I can’t play games and risk it.
In the past, I have listened to the pharmacist who assured me a medicine was gluten-free, only to find out the hard way he was wrong. (Incidentally, pharmacists routinely make these mistakes for a variety of reasons that aren’t their fault. The law doesn’t require labeling on medication, so it’s guess-work.)
Nurse Robin says she’ll send in another prescription for brand name medication and we can see what happens.
We hang up.
I call the office again and ask to make an appointment with the doctor to sort out my medication. Paying $500 a month for drugs is ridiculous. It’s not okay to not have my meds. It’s not okay to take medication that may have gluten and make me sick.
But I’m not due for an appointment, so they will put me through to the nurse. But I just hung up with the nurse. I need the doctor.
They still have to get the okay to schedule an appointment – from the nurse – but they’ll call me back.
“I can’t make an appointment to see the doctor?”
“You’re not due. Someone has to okay it. We’ll call you back.”
They did. Today. Another woman, named Danielle. The doctor can see me Feb. 4th.
“But that’s almost a month from now,” I say. “I don’t have my meds.”
“Yeah, I saw the notes. The pharmacy said there’s no gluten in it.”
“When I spoke to the nurse yesterday, I told her I was happy to take the medication if it is labeled gluten free,” I say. “She said she couldn’t confirm it was labeled, only that the pharmacy tech said there is no gluten. I’m not trying to be difficult. I just don’t want to get sick.”
*silence*
“I don’t know what to tell you. The first available appointment I have is Feb. 4th. I mean, I could put you on a cancellation list.”
At which point, I told them not to worry about. I’ll get another doctor.
Celiac patients – myself included – are accustomed to researching this shite on their own. For brand name drugs, calling the manufacturer or searching online works great. For generic drugs, you have to know who made it first. Every pharmacy has a different generic drug supplier. Every time a prescription is refilled, I have to check with the manufacturer of that generic to make sure it’s gluten-free.
The label on this bottle of generic medication is covered by the label of my stupid mail-order pharmacy, so I can’t see who it is.
Further internet research tells me six companies make this medication: License to produce was granted to Dr. Reddy’s Laboratories, Kremers Urban Pharmaceuticals, Lupin Pharmaceuticals, Mylan Pharmaceuticals, Teva Pharmaceuticals and Torrent Pharmaceuticals, according to the FDA website.
I spend a half-hour methodically peeling the pharmacy label, trying to make sure I don’t rip the maker’s name underneath.
Success: Lupin Pharmaceuticals. I call them – in India – and they tell me it is gluten-free.
Halleluiah.
It took two days, too many phone calls and several hours of research to get an answer to something my gastroenterologist should have known before he allowed a generic substitute.
This is not okay.
Because no one is going to pickup the slack around here if I am in bed for several days because I’ve been poisoned by gluten.
Because no one is going to be fined $12,000 if gluten is in this medication. (Read that. Irony much?)
And I feel helpless and lost.
Until a longtime friend and editor says, “You should write about this.”
I had doctor soap box a few years ago. A doctor in California gave me faith in the profession and peace of life.
Most doctors don’t like to be questioned. They do this all day, every day. Of course, they know what they’re talking about. Except, oh. They missed that detail.
I was treated as a hypochondriac for a mysterious pain near my groin. Being female, they checked my ovaries for 3 years and obviously thought I was hysterical. It took a trip to the ER to discover I had a bad kidney. Sorry for not producing textbook symptoms. Surgery within a month brought me together with the biggest asshole in the world of doctors. He made a few choices that were bad and in his write-up (two weeks after surgery), he blamed me. Yes, because my degree is bigger than your degree.
For the next ten years he was defended by others in his profession (thousands of miles away)and I was an irritant because I questioned every pain. It was a good surgery. You’re imagining things. Your kidney can’t hurt down there.
In 2009 I developed a kidney infection (diagnosed as swine flu because I had a fever. No test. Just swine flu. And I had to pay for the visit). I told the new surgeon what happened with the first and he was angry. He felt certain my second surgery was due to the 1999 decision not to stint me. I was validated and healed. I may never be 100% but I don’t think about it everyday, either.
Hmmm – I wasn’t going to dump my story but it still comes out like projectile vomit. I understand your frustration. ESPECIALLY, because it’s a known, documented situation. The doc shouldn’t prescribe anything that conflicts. Case closed.
Thank you for writing about this. I didn’t think to ask about my medication until a few months after I was diagnosed and my follow up blood work continued to show elevated ttg levels. I found out the medication I’ve taken every single day for the last 20 years was not guaranteed gluten free. I was devastated that my gastro and family doc did not figure this out, it seems so simple, don’t prescribe your celiac patient with drugs containing gluten! What a wake up call to me in how alone I was in this and that I am the only only that is looking out for my recovery. I went though an almost identical scenario to track down the gluten free version of my medicine.
I’m so sorry you had to live through this too. Nothing is more frustrating – or eye-opening – than when your own doctor fails you in such a huge way.
I feel your frustration! I get chronic and debilitating migraines due to gluten and a few other triggers. Most are avoidable, thankfully. But some are not. I have dealt with doctors apologizing for my pain, but leaving the research and treatment up to me. This is NOT my career, but I spend a great deal of time on the internet trying to discern any possible reason that the pain won’t stop. I completely agree with you that this is insane, and there have to be better doctors out there. Where are they!?
I wish I knew. I did find a local celiac expert. I have an appointment early next month and I will update everyone. xo
Rebecca, I know all about this. In fact in my latest book I wrote about my diagnosis of Crohns disease and what I was told and the drugs that I was given were killing me! I as well cannot tolerate gluten or dairy. Even the doctors do not get it! And I can tell you that many doctors are not well-versed in what’s inside medication as they prescribe from whichever pharmaceutical company gives them the most perks. I have witnessed my doctors looking in the Merck medical book when looking to give a prescription. You have to be your own advocate and trust me if I wasn’t I would have long ago been in a wheelchair! So good share!
P.S. I ingest NO pharmaceuticals, no prescriptions, I live holistically and have researched the supplements I take for over 20 years by myself and I am healthy!
So sorry Becky and everyone else! That’s just not fair. Docs are supposed to serve you the right way and not guess work. For Pete’s sake this is your health! Health is a life or death circumstance that needs to be taken seriously. When I had a scorpion bite me at my uncle’s place they didn’t take it seriously and damn that venom did my foot right!
And my best friend has had eczema for years and docs can’t seem to help. I found a remedy that works but shipping is costly so I’m crowd funding some money to get her some medication. If you’d like to help out or give me some advice on how I can help my dear friend just send me an email here: duggyparks@gmail.com
And thanks for this beautiful eye opening and much needed post!
Rebecca,
I’m sorry to hear about all of this. Total fucking nightmare! Makes me think about the AMA, FDA among others, and what is going on when you can’t get a reliable answer from those you’ve entrusted with your health. One’s health is all that we are seems to me. I sincerely hope you’ll get this all sorted out, and get to feeling better soon. Thank you for this post. Also thank you for all the writing you do. You’re the best T2H….!!! This comment comes from someone you knew a little about from Blogging.
Much Love….
Joe
xox
Pesky Typo entering my site. Apologies.