Queen Latifah, Cigna, and Celiac

"An undiagnosed celiac patient might be getting dismissed with IBS".   I was told that I definitely would not have Celiac because it is a rare disease. This was in 2007. Fortunately - or not for him - I had a friend that had Celiac and it was easy for me to identify the same symptoms in myself. And so - I insisted on minimally having the blood test done back then. IT WAS POSITIVE FOR THE ANTIBODIES.  Later biopsy and genetics concluded that also.

I can TOTALLY relate to this!  Back in 2009 I was diagnosed with Hashimoto’s and even after I felt a little better I still had gastrointestinal symptoms that only became worse.  I told my PCP and he laughed at me and told me I was too fat to have Celiac disease.  All of my google searches pointed me to celiac.  I finally got smart and made an appointment with a gastroenterologist- it took me 2-3 months to get in.  I recall telling him that I felt better when I fasted for a few days and he ordered a test for me and it immediately came back with such high antibodies that he knew I had it.  The endoscopy came back positive as well.  I am just grateful that I was able to refer myself and not rely on a PCP who blew me off.   The level of suffering that I endured was so bad that if it were not for my MIL telling me that I needed to see a gastroenterologist pronto I probably wouldn’t have done it. My brain fog and self doubt was so bad at that time.  It is hard to advocate for yourself when you’re hit with multiple AI diseases.   Luckily I am much better off now - but it has taken a decade. 

Diagnosed in 2013 after YEARS of being told I was crazy by many many doctors. Accused of doctor shopping when I was incredibly sick and utterly desperate for help. Lectured by an ER doctor when I was writhing in stomach pain, accused to trying to score pain meds although I never asked for medication nor was I ever given any, just sent home in tears. Even post diagnoses was a nightmare so I checked myself into the Mayo Clinic. After a 2 week evaluation I came home with doctors orders to start IV iron therapy right away. I went to a local hematologist to begin therapy and was told no, that I didn’t need it, just to take iron pills... with no regard for the Mayo Clinic’s instructions, or fact that I was a newly diagnosed celiac who wasn’t properly absorbing much of anything,  or that my ferritin level was 3, or the fact that I was so weak I’d stop breathing in my sleep on a regular basis.  My fiancé at the time (husband now) was so angry he called the hematologist and boom, my first iron therapy was the next day. It’s disgusting. Male and female doctors alike. I haven’t been to the doctor in years but in the spring I was feeling run down and asked for a blood panel to check my CBC, iron, ferritin, thyroid, various vitamin levels... all things that have been a problem for me, and she only pulled my CBC and TSH. She didn’t feel the others were necessary. Because...? No answer. I can’t bring myself to find another doctor. I’d rather keep my dignity in tact. Tell my doctor what’s going on physically and mentally? No thanks. 

I was diagnosed in my forties due to super low iron levels. I had very vague symptoms and after going on the gluten free diet they went away. I saw those same vague symptoms in my daughter who was about 14 at the time and asked over and over for her pediatrician to do the blood test and she refused. Why? They were doing a CBC anyway. It took 3 years before I finally insisted and her numbers were worse than mine. Why are doctors so resistant? 

The very first thing that bugs me about the Queen and her advertisement....just how do we explain all this in the 7 minute average appointment ......with the dr staring at the computer during the entire appt?  maybe the Queen could demonstrate how she would do it?

I was diagnosed with celiac disease within a month after having post-prandial stomach discomfort for 3 or 4 months.  The diagnosis was made by upper endoscopy with biopsy of the duodenum.  The referral to a gastroenterologist was made almost immediately by my primary care physician.  I was not blown off most likely because I am a recently retired physician (internal medicine).  I don't really know how long I have had Celiac Disease.  Probably a lot longer than a few months.  I have had symptoms of peripheral neuropathy for 10 years, but I didn't suspect celiac disease. (A neurologist diagnosed pinched lumbar nerves and I do have lumbar osteoarthritis, but I knew better). I have known for a year that I have low Vit B-12 and ferritin levels and have been giving myself monthly B-12 injections, but could not tolerate oral iron even in very small doses.  I felt better within 4 days of going on a gluten-free diet Sept 1, 2019 and have lost 7 lbs.  My deaminated gliadin and tTg IgA levels were >10 x normal.  These are the blood tests needed to screen for celiac disease. My sxs of peripheral neuropathy are slightly less.  Do not let yourself be treated shabbily; insist and switch physicians if you feel this is your case.  Get rid of a physician who continually stares at a monitor and types during an office visit.

It's really disconcerting how dumb doctors are about celiac disease. I was in the military in 2000 when I presented with chronic fatigue, low protein levels, low iron levels and elevated liver enzymes. I was told to stop exercising so much (I usually tried for 1 hour a day/6 days a week when I even had the energy), eat more meat (I ate plenty of meat), eat more spinach (again, I was and still am a very healthy eater), and stop taking all meds (what? you mean the single  birth control pill I took every day????) and stop drinking (uh, yeah, wasn't drinking at the time). Six years later, after I retired from the military, I presented with uncontrollable diarrhea. It took 2 months for my PC doc and the gastroenterologist (who, by the way, had the nerve to ask if I was "just taking laxatives"). SERIOUSLY, MEDICAL COMMUNITY???? How can this be something patients have to figure out on our own? And not only that, after finally getting an accurate diagnosis, I was told to "look it up" and that "eating out will be a pain in the butt". Even now that I understand my disease and how to work within its boundaries, the rest of the world thinks it's just a fad diet: friends, restaurants, media--which essentially means, I can't trust anyone with my food except me. So, despite QL's ad, we can tell our doctors everything, but they only deal with what drugs can treat. We're better off seeing integrative medicine doctors, who at least seek to understand and treat the bigger picture of our health. 

I am a retired gastroenterologist and it literally pains me to read these posts---my sympathies to you all---I retired because I refused to use a computer in my practice---I would NOT take or use a computer in the room with a patient---it is the patient who deserves your time and attention---not a computer---but  that is not the way of medicine today--I was told I would not get paid unless I complied with all these pointless (IMO) regulations with the computer--and trying to comply took a lot of extra time---time that could have been much better spent---like talking to the patient or studying about what problem they might be having.  I foresaw that it would only be getting worse so I decided I could not practice medicine that way and retired---obviously most doctors are not in a position to do that, but from what I read and hear more probably will. Medicine has become too much like a business with strict times and guidelines to be followed in seeing patients  Medicine is an extremely difficult and formidable occupation-but why make it harder?  I do not know why celiac disease remains a problem for doctors---the information is out there--I just do not think doctors have the time to LISTEN to their patients and/or process the information---which is sad---a doctor should never pass off a patient, dismiss their complaints, or quickly reach for a RXpad(especially to write for an anti-depressant)--ALWAYS start off that there is something organically wrong with the patients and that their symptoms can be explained  I believe doctors are probably being pressured to order minimal tests and to minimize referrals to specialists like gastroenterologists--I agree with Dr .Hess if your doctor stares at the computer more than he looks at you or you feel has not taken your complaints seriously--get another doctor---there are good ones out there

I, to have experienced most of what the other responders have described.  I, too have felt humiliated, frustrated, etc. I, too have been very, very angry at the treatment I have have received by both the medical professionals AND staff in restaurants and so forth.  But here’s the thing, we can feel all of this and allow it to raise our blood pressure OR we can patiently and reasonably educated those people the seriousness of the disease.  Anger can motivate but only calm, sensible action will help change things.  So talk and insist and explain and educate and do it calmly and firmly.  You’ll be amazed at the progress you will cause.

Barbara G.

23 minutes ago, Guest Anthony C. said:

I am a retired gastroenterologist and it literally pains me to read these posts---my sympathies to you all---I retired because I refused to use a computer in my practice---I would NOT take or use a computer in the room with a patient---it is the patient who deserves your time and attention---not a computer---but  that is not the way of medicine today--I was told I would not get paid unless I complied with all these pointless (IMO) regulations with the computer--and trying to comply took a lot of extra time---time that could have been much better spent---like talking to the patient or studying about what problem they might be having.  I foresaw that it would only be getting worse so I decided I could not practice medicine that way and retired---obviously most doctors are not in a position to do that, but from what I read and hear more probably will. Medicine has become too much like a business with strict times and guidelines to be followed in seeing patients  Medicine is an extremely difficult and formidable occupation-but why make it harder?  I do not know why celiac disease remains a problem for doctors---the information is out there--I just do not think doctors have the time to LISTEN to their patients and/or process the information---which is sad---a doctor should never pass off a patient, dismiss their complaints, or quickly reach for a RXpad(especially to write for an anti-depressant)--ALWAYS start off that there is something organically wrong with the patients and that their symptoms can be explained  I believe doctors are probably being pressured to order minimal tests and to minimize referrals to specialists like gastroenterologists--I agree with Dr .Hess if your doctor stares at the computer more than he looks at you or you feel has not taken your complaints seriously--get another doctor---there are good ones out there

Dr. C., you are on the money.  When they put in the computer (the "elecronic medical record"), I knew I was done for.  I can write legibly faster than I can type.  I still feel the doctor should not be typing while examining the patient, especially if there are family members/friends in the room.  There is much unspoken communication (expressions, shaking/nodding of heads, etc.) from family/friends/patients.  You can't read these signs while looking at a screen.  I did take very brief abbreviated notes on a small pad and later enter my notes into the EMR which had to be completed.  I had colleagues who spent 3 minutes in a room with a patient, came out and entered a complete medical exam into the EMR (probably copied from previous notes) in order to up-code the visit.  Yes, it took longer to enter the EMR data after leaving the room, but I know my partners could/would read & trust my notes.  If I said I examined this or that, I had done it and they knew it.  I graduated from medical school in 1968, which makes me a dinosaur, I know.  I shredded my medical school notes many years ago, but I do not recall learning much about Celiac Disease in the 1960's.  Therefore I encourage patients to see the younger gastroenterologists.  When I finished pilot training, my instructor told me that I was the best pilot that day than I would ever be in the future. I didn't believe that then. That applies to internal medicine to some extent. Fortunately, the gastroenterologist I saw did nothing but listen and feel and talk.  He was the newest doctor in the practice, obviously well-trained.  I was lucky.  

Jim H.

16 hours ago, Jim Hess said:

Dr. C., you are on the money.  When they put in the computer (the "elecronic medical record"), I knew I was done for.  I can write legibly faster than I can type.  I still feel the doctor should not be typing while examining the patient, especially if there are family members/friends in the room.  There is much unspoken communication (expressions, shaking/nodding of heads, etc.) from family/friends/patients.  You can't read these signs while looking at a screen.  I did take very brief abbreviated notes on a small pad and later enter my notes into the EMR which had to be completed.  I had colleagues who spent 3 minutes in a room with a patient, came out and entered a complete medical exam into the EMR (probably copied from previous notes) in order to up-code the visit.  Yes, it took longer to enter the EMR data after leaving the room, but I know my partners could/would read & trust my notes.  If I said I examined this or that, I had done it and they knew it.  I graduated from medical school in 1968, which makes me a dinosaur, I know.  I shredded my medical school notes many years ago, but I do not recall learning much about Celiac Disease in the 1960's.  Therefore I encourage patients to see the younger gastroenterologists.  When I finished pilot training, my instructor told me that I was the best pilot that day than I would ever be in the future. I didn't believe that then. That applies to internal medicine to some extent. Fortunately, the gastroenterologist I saw did nothing but listen and feel and talk.  He was the newest doctor in the practice, obviously well-trained.  I was lucky.  

Jim H.

Dr. Hess, I appreciate the feedback; I graduated in 1969, so we are both dinosaurs--but frankly I preferred to be a dinosaur---medical knowledge and technology are advancing so rapidly but maybe it is time to "get back to the fundamentals"---strengthening the doctor-patient relationship.  In regard to Celiac disease, I was fortunate--in medical school I was quickly drawn to gastroenterology and the head of the GI department had written several articles on celiac disease and during my time in medical school I spent a good deal of time in the GI dept. and became quite familiar with celiac disease, at least as it was in 1969.  When I started in private practice in 1979, I routinely diagnosed patients with celiac disease--one time I was contacted by another gastroenterologist in the area who was moving away after 25 years in the area and he wanted to refer to me his LONE celiac patient---in 25 years he had diagnosed one patient with celiac disease---I was stunned. I do think the situation has improved but presumably from what I read in these posts hardly enough. Though retired, I still keep up with the all the advances in celiac disease and continue to find it fascinating 

On 10/15/2019 at 8:28 AM, CelesteRY said:

I haven’t been to the doctor in years but in the spring I was feeling run down and asked for a blood panel to check my CBC, iron, ferritin, thyroid, various vitamin levels... all things that have been a problem for me, and she only pulled my CBC and TSH. She didn’t feel the others were necessary. Because...? No answer. I can’t bring myself to find another doctor. I’d rather keep my dignity in tact. Tell my doctor what’s going on physically and mentally? No thanks. 

 

If you are in the Boston area, I highly recommend the Celiac Clinic at Beth Israel Hospital. Melissa Dennis, the dietician, has Celiac herself and will ask for full vitamin panels and determine which gluten-free vitamins best meet your needs. I see Dr. Leffler but there are about 5 others. I have found Dr. Leffler to be quite sympathetic. It may take a few months to get an appointment but it's worth the wait for the correct treatment and information. Best of luck.