Celiac Disease / Uncategorized

Can We Talk About Doctors?

doctors celiacAfter spending a day-in-the-half in the hospital, first for myself, then for my daughter, I’ve recently had the delight of being exposed to a number of physicians. While I’m a big fan of my general practitioner, and don’t even get me started on my GI doc (so handsome, so unfazed by poop talk), whenever I’m sick I find myself in that position of playing phone dodge with my GP’s office. Usually I’m calling before they open, or after, or in that two-hour lunch break where the staff refuses to answer the phone for 15 minutes leading up and 15 minutes after. Which is how I wound up at one of those walk-in clinics on the weekend, and ultimately in the ER.

All doctors are not created equal, ya’ll. Some of them are all, “Umm, yeah you should NOT be taking these antibiotics,” and others are like, “I’m pretty sure it’s not the most powerful antibiotics in the world that you’re hoovering while being celiac, but merely a stomach bug,” as I’m being pumped full of morphine. Then there’s the, “It was probably that burger you had.” Ummm, don’t mess with my burger, people. Do. Not. Mess. (Although if it does turn out to be the burger, well, fool me once contaminated meat, shame on you . . . )

Then we’re all up in my daughter’s villi and the result is, “Looks good, but that blood test seems wonky, so let’s biopsy and talk about this celiac situation again.”

Okay. I get that maybe medical science isn’t all that exact. I get that people get misdiagnosed, non-diagnosed, and just ignored for years. But at this point I was preparing for my super duper exciting book release (TUESDAY!!!!) and my even more exciting book hocking this weekend at the CDF Gluten-Free Expo in Pasadena. (Yes, I do realize that “excited” and “gluten-free expo in Pasadena” do not usually go together. But you, my people, get it.) And instead of just sitting around staring at a pile of books, grinning like an idiot I’m instead staring at this gluten-free chicken soup and waiting for when I can actually eat it without yakking.

gluten=free chicken noodle soupWolfgang Puck. Who knew?

My point is, even celebrity chefs can change their minds about whether or not to be gluten-free friendly. (Okay, that wasn’t my point but I’m going with it now. Blame the morphine drip.) And doctors are also not all on the same page whether it’s dealing with celiac, or general wellness. They are human. We are human. They just have that whole ability to help us heal, or knock our asses into the ER. Kind of like Wolfgang Puck.

Please share your horrible doctor stories so I can stop whining. K, thx.

Image via Flickr

22 thoughts on “Can We Talk About Doctors?

  1. Literally this weekend – I had food poisoning. (Maybe. It may instead be gallbladder problems, though those initial tests came back normal.) If it was, it was severe, severe food poisoning. When I get glutened, I throw up – so throwing up is normal for me, and I tend to be totally cool with it. However, when I vomit some 75 times in a morning, and start vomiting blood – uh, something is the matter. I was in LA, about 3 and a half hours from home – so I went to urgent care. (And don’t get me started about finding an urgent care that would take my completely normal insurance – even after calling one place, who said they’d take it, when I got there, they said they only took Blue Shield PPOs, not HMOs, even though I CALLED AND THEY SAID THEY TOOK IT. But I digress.) After about an hour wait, me and my puke bowl were finally seen by a doctor, who promptly told me I had celiac disease. (No duh, I told them that. BTW, when I had said celiac disease, he asked me what pills I took for it – I told him nothing, I just completely avoided gluten. Didn’t give me a lot of confidence.) When I explained that this was caused by gluten, he left the room (without saying anything) for about 10 minutes. When he came back, he again told me it was my celiac disease. When I assured him again it wasn’t, he said he didn’t know what it was then, and wasn’t willing to do any other tests, since it was obviously celiac. (I asked for another doctor, and also ended up in the ER later on.)

    This is just the most recent of the doctor problems I’ve had. Pre-diagnosis of celiac, I had one GP tell me I was a hypochondriac, and another who told me I was bulemic. The GP who finally thought celiac told me it only happened to kids, that mine would be somewhat of a fluke if I had it.

    • You win! By losing horribly. OH. MY. GOD. I’m so, so, so, so, so sorry.

      And do you think food poisoning happens more often to celiacs? I’m suddenly getting sick all the time, and before I was diagnosed I did not seem to fall ill with the stomach business. Whatever. That “pill” guy sucks the big one.

      • I just realized I left out a word – “When I explained this was NOT caused by gluten…” I just couldn’t believe him!!! Celiac disease is not always the answer to every stomach problem!!

        And I don’t know if food poisoning happens more often – that’s an interesting question. I think other intolerances happen more often, like not being able to eat a giganto bowl of ice cream or a milkshake. (I will not give up dairy, I will not.) I was definitely a super healthy kid; getting sick really didn’t happen til my mid to late 20s. (I’m 31 now.)

        Hope you’re feeling better now!! And that they’ll get everything figured out with your daughter!

  2. I don’t even want to start with my horrible Dr. stories and why I am in Dr. limbo at this point due to insurance. Anyway I will say it took my 5 years to get diagnosed because the Dr’s said, (even thought the number of Celiacs diagnosed in my family grow monthly) that I, “was not sick enough for long enough and there is no way I could have Celiac disease.” Now I am even more particular about Dr’s then before and don’t go unless I’m dying. Anyway, I am so excited that you will be at the GF expo in Pasadena this weekend and I will definitely be stopping by to meet you in person.

  3. I’ve already gone on and on to the point of making myself sick (without gluten) about my bad doctors and doctor’s receptionists (e.g., they offered me crackers after my endoscopy here, they told me “Remember you’re not the doctor, ma’am” when I questioned something here, and of course they wrote me off as “IBS” for years here). So I won’t babble about it anymore.

    I’m sorry to hear about your negative experience but I’m SO excited to get my hands on a copy of your book!

    • They offered me crackers in the ER this week too. I was like, ummmmmmmmm, medical history people. Medical history.

      Now I’m going to go read your awful stories so I can feel better about myself. Thanks!

  4. I don’t have many horrible GI doctor stories (though the receptionist did tell me at first that it was TROPICAL sprue rather than CELIAC sprue….). I’ve got some god-awful gynecologist stories though!

  5. I am so glad I’m not the only one western medicine has failed. I went to several different doctors and got several different a answers as to why I was 21 who had dealt with chronic joint/muscle pain and “IBS” since I was 14 or 15. Doctors continually tested me for arthritis despit the multiple negative tests previously, one doctor told me it was fibromyalgia, one said growing pains, and another literally told me I hurt because I was abnormally flexible. None of them had any idea what was wrong with me, and the same doctor that told me the latter said “he wasn’t going to prescribe me any narcotics.” So after being treated like a crazy drug addict I listened to the advice of a friend of mine (no medical background whatsoever) and went gluten free. Two to three weeks later my life was changed. It’s astonishing how useless doctors can be.

  6. Do they all go to @-hole U? Is there some sort of requirement during residency to learn to behave like total pricks? After 2 decades of horror culminating in a long hospital stay (dropped 30 lbs in 3 weeks)and finally getting a biopsy that confirmed celiac and a gall bladder function test that confirmed my gall bladder wasn’t working, the GI who adamantly said it was NOT celiac disease (I was too overweight to be celiac, he said) and NOT my gall bladder (there’s no stones so it’s not your gall bladder…) “Well, you had IBS too because as a woman you can’t handle stress.”
    We need a Better Business Bureau for Drs. and their staff. How can we, as their “customer” make them more accountable for their behavior?

    • We’re kind of at their mercy. Other than yelling and stuff.

      And I wonder how many of us were told we were “stressed.” Like, all of us? It’s probably all of us.

  7. My celiac diagnosis seven months ago was a complete fluke. It all started with brain fog, mild nausea and fatigue about a year before that. The worst was the raging anxiety. My gynecologist shrugged it off as “bad menopause” (I was 48 at the time). A GP diagnosed it as IBS without running any tests. Another GP said it was “nerves” and told me I had to get a handle on the anxiety or else I’d end up institutionalized before writing scripts for Lexapro and Xanax. I was stupid enough to believe him and took one dose of Lexapro. The reaction was so awful I refused to touch it again. The Xanax remains unopened in a drawer.

    I finally went to a G.I. last September, who did an endoscopy looking for gastritis and instead found celiac. Ok, so my condition had a name. BUT…this G.I. described celiac disease as a gluten allergy and that it was no big deal. He said the name of the condition was more impressive than the condition itself. All I had to do was not eat gluten for the rest of my life. Not knowing anything about celiac I asked what would happen if I accidentally ate gluten. He said I could occasionally lapse from the diet with no harm, so if it was my birthday and I wanted to eat regular cake, it was fine.

    I went home much relieved — until I researched celiac online and discovered it was far more serious than the G.I. let on, and that it was NOT fine to cheat. After reading everything I could I realized the doctor really didn’t know much about celiac. When I called him with a long list of questions, he bristled, rushed me off the phone and essentially washed his hands of me. I’ve been gluten-free since my diagnosis and feel fine. All my symptoms disappeared within a couple of months. Before eliminating gluten, I went on my own to a lab for a celiac panel so I could have some baseline numbers. Now I’m shopping around for a new G.I. who knows about celiac for follow up because I refuse to go back to the other one.

    If there’s anything positive about my story it’s that I was diagnosed fairly quickly — a little over a year from onset of symptoms. The downside is that although the anxiety has improved tremendously, I’m still very paranoid about how much damage celiac may have wreaked on my body before diagnosis.

  8. Wow there truely is a stupid dr epidemic world wide, at least as far as celiac is concerned. I won’t bore you with all my idiot dr stories…..and girl I have plenty, but I did want to reassure you from what I understand the prognosis for your body being healthy once on a gf diet is very good. If the information is untrue, well then there are a whole bunch of us totally srewed, I myself can remember being taken to the hospital when I was nine for excruciating stomach pains and a whole host of symptoms related to celiac including many miscarriages in my late twenties. I wasn’t diagnosed until I was forty four and only because my daughter was diagnosed (after years of suffering) she was ten at the time.. Keep researching, reading and talking to other celiacs, but mostly keep smiling and stop stressing. I promise it gets easier and you will learn to look at it as just another part of your life…..a part that sucks….but still just a day to day thing you deal with. 🙂

  9. Pingback: Gluten Bullying? What the What? | Gluten Is My Bitch

  10. I’m glad I found this site…I need to vent!! Today I called my GI doc office to see if I could get a referral to see an allergist for food testing (I’ve been breaking out in hives and my left eye gets very swollen and I also get the serious Celiac issues too. I wanted to see if I have a wheat allergy as well as Celiac.) The nurse called back a few hours later and asked that I don’t need an allergy test since I’ve already had one and that is how they diagnosed me with Celiac…wtf!!! I’m not a nurse or doctor or do I have any medical background, but I do know the difference between Celiac and a wheat allergy. I stayed calm and didn’t scream at her like I wanted to. I went on explaining my symptoms again and saying that I want a skin test not a blood test and she still wasn’t listening. “Well, I think you should probably get an endoscopy then?” she said! Again WTF…who is this person! I have had the blood work, endoscopy and all were positive for Celiac. I just want to know why I am having skin issues and swelling. I want to know if I’m coming in contact with wheat or is it some other food allergy. That is it! I don’t intentionally eat gluten, but a few weeks back (my son had surgery and we had to travel for two days) We had to eat out and I had a GF pizza and a few hours later I had the swelling and hives :/ So I do believe that it was caused by that. I’m worried that I have this reaction to wheat and if I don’t get diagnosed and my symptoms get worse, I might ended having severe anaphylaxis the next time. I feel like I’m wasting my time and money on these morons. UGh!!

    • Ugh, indeed. I think that doctors, nurses, and well, most people have a fixed idea and don’t waver even when someone is telling them the opposite is 100% true. It’s really hard to find someone who can listen, process, and discover.

      • Thank goodness I found your book this weekend. I have spent six years reporting my symptoms to various specialists, and GI’s in particular. I have been told that my stomach is paralyzed and I will need to be tube fed. No. I was a woman, stressed out, and my stomach was playing brain transmitting bad signals and I should take a nonapproved pill for nausea, side effect lactation, I weaned my son twenty years ago, thanks. (That was “THE” expert in New England, at Rochester medical). Aspirin allergy, No. Chronic Viral Disease. No. We don’t know. At last some honesty. So the biopsies begin, no Celiac, yes Barret’s Esophagus, and we never heard of a person getting achy joints, asthma and severe acid reflux all together. But you have no allergies, to anything. Try these pills, for the rest of your life, maybe they will help. WTF???? So my nutritionist friend, my chiropractor, and every witch in the northeast said, get rid of gluten. In desperation I tried it. And got rid of dairy, and nightshade vegetables. Which is an f’d up diet. Within 4 days, better, within 2 weeks amazingly better. Yes, I think I will have some manicotti, thank you. May I use your bathroom for the next 24 hours? Ow. I have been 5 weeks GF, and when I get dosed I know it right away. I get to see my docs in August, to review, maybe the biopsy for Celiac was wrong? Maybe a look at villi would be more useful? They pat me on the head, tell me to get some therapy for my stress, and give me some probiotics. I am trying not to be angry with them, after thousands of $’s in useless tests. Other than squeezing them in the testes in our next meeting, screaming listen to me!!! I would like to come with a list of questions, or demands. Do Celiac biopsies come back negative? What other tests can I do? Your book rocked. I read it in a day, cried a lot, and have pages earmarked for my boyfriend to read. The one who says, “what? One little crumb won’t kill you!”

      • Kyra! OY.

        Well, my daughter had the celiac panel and it was positive. Then she had a biopsy and it showed no signs of celiac. We’re on our second celiac panel, so stay tuned.

        Also, I’ll let the gluten intolerants weigh in here. Because gluten can fuck you up even if you don’t have celiac. You can have even worse symptoms of a celiac, but not have celiac disease. As so many have told me, “I eat gluten. I get sick. I don’t get gluten. I don’t get sick.” If your doctor can’t help you, just cut that shit out if you feel better when you don’t have it.

        UGH. I’m so sorry for this redonkulous journey.

  11. Thank you, at least I get to experiment with new recipes (previously I hated cooking and now it is survival to prep my own food), and thank you for all the delicious options. The nurse at the GI specialist did say so many people are showing up with gluten intolerance issues, they’ve had to hire two new doctors, so maybe they are learning as well. Currently the wait for a GI is about 90 days, so I have time to see how this will work. For me gluten is out, life is just better that way, no matter what the tests do or do not show. Thanks again for sharing your experiences,it is helpful to laugh, my friends and family are weary of gluten tales!

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