"Skeptical" doctors?

[moleface]

Hello!

I'm just wondering if anyone here can offer any advice on how to convince doctors that I'm gluten intolerant.

My history-

I've always been underweight no matter what I eat and prone to illness, and I've had severe pneumonia three times, one bout requiring a partial lobectomy. I never considered any sort of disease as the culprit for my poor health, but I accidentally stumbled onto celiac disease back in 2011.

I'd been running daily for several years, and was trying to bulk up on the cheap by eating a box of pasta a day, oatmeal, bags of cereal, and any other inexpensive high-calorie foods I could get my hands on. For about a year, I began dropping weight and developed painful swollen hands. I finally went to the E.R. after one of my eyes turned bright red and felt excruciatingly painful, where I was referred to a specialist and received an iritis diagnosis. A couple weeks later, I abruptly lost the enamel on one of my front teeth. I looked up the symptoms, and found that it was textbook celiac.

Without reading too much about celiac disease, I decided to cut out gluten just on a whim to see if my symptoms improved. Within a week, I started rapidly dropping weight and my face went white. At its worst, I passed easily-digestible gel cap vitamins whole. I did some more research, and found that a minority of patients actually get worse when they cut out gluten. Considering that I had no idea that this phenomenon even existed, yet still got much worse even though I was expecting to feel better, that clinched it for me - I likely had celiac disease.

Once the "withdrawal" period passed, I ended up gaining 20 pounds despite the fact that I was eating far less than before. Whenever my bowel habits suddenly changed for the worse, I'd scour my diet and find that I made a rookie mistake - eating soy sauce, cross-contaminated oats, etc.

I didn't have health insurance until several years ago, so I never sought care for my gastro issues. I ended up in the hospital in 2013 for a necrotizing strep infection, where I received a blood test that finally confirmed celiac disease.

Fast forward a few years, and I'm finally insured and want to do something about my symptoms. I went for my first appointment with a family doctor, who treated me like a wackjob fad dieter. I didn't have copies of my medical records yet, so I had no defense at the time. Every symptom I told him was met with the same condescending dismissal - "who TOLD you you had iritis?" etc., and he then proceeded to give me an impromptu blood test to check for celiac. When I asked "But don't you have to eat gluten first to test positive?" he smirked and gave a non-answer - "Oh, I wouldn't ask you to eat a Twinkie and get sick." The nurse was openly hostile after running the blood test, and sharply said "you're fine" before the doctor came back into the room and gave me a lecture about "assuming" that I have an illness. He then referred me to a gastro doctor.

The gastro doctor did an endoscopy and colonoscopy, and found iron deficient anemia and ulcers in my small intestine and duodenum. He had me eat gluten for two days leading up to the procedures, which he claimed was ample time to test positive for the disease. I'm aware that doctors tend to take it as a personal affront when patients disagree with them, so I played along and acted overjoyed to find out that I could eat wheat again. His diagnosis was Crohn's disease. But when I politely asked if my tooth enamel defects are a symptom of Crohn's, he confirmed that they aren't, but had actually never even heard of celiac disease causing tooth enamel loss. After gently pursuing this line of questioning further, he finally said "I'm not a dentist" and walked out in a huff without saying goodbye. No follow-up care was offered.

Ever since that initial GP visit, I've had nothing but overt dismissal from every doctor I visit, even when I bring copies of my medical records. I feel that the more doctors I see who make a snap judgment that I'm a hypochondriac, it just adds yet another doctor to the list of physicians who put down "hypochondria" or "anxiety" in my medical records, which makes it even more difficult to be taken seriously by future doctors.

My health has been failing me in recent years - no matter how immaculately I eat, I have to get up at least four hours before I need to leave the house so I can get repeated bouts of severe diarrhea. This entails literally getting up at 2 am to get to an 8 am appointment. I can't live like this much longer, but I've stayed away from doctors in recent years because I literally break down in tears from sheer frustration once I leave the office.

Can anyone offer any advice on how to handle doctors? I always make sure that I defer to their judgment and try not state anything in absolutes, and I'm naturally a very friendly and empathetic person, so my demeanor isn't confrontational. I'm dreading going to a new gastro doctor because I'm half expecting to be told that I'm imagining everything. I'd think that a Crohn's and iritis diagnosis, plus a positive blood test, would be enough to convince most reasonable doctors, but apparently not.

Thanks!

Edited March 23, 2018 by moleface

[GF-Cheetah Cub]

I am sorry to hear about your frustrating experience with the physicians.

To me, the real question is: are you on a strict gluten free diet, and are you feeling better and healthier?

If you are, you don't need to "convince" any doctors, you don't need their blessing, certainly not their attitude.   It is your own body, if you know that gluten makes you feel bad, don't eat it.

My daughter was diagnosed 4 years ago.   We haven't seen our GI doctor in 3+ years.   Celiac disease does not require medication.   You self medicate through a gluten free lifestyle.

BUT...if you have been on a gluten free diet for years now, and still have issues, then you might want to be open to listen to the GI doctor about other possibility (perhaps in addition to celiac) that could be giving you health problems.

 

[kareng]

You have Chrohns disease and the doctor isn't doing anything about it?  chrohn's  is a serious life threatening disease .  Celiac is serious, but not like  Crohn's.  

 

 

.  

[moleface]

44 minutes ago, gluten-free-Cheetah Cub said:

I am sorry to hear about your frustrating experience with the physicians.

To me, the real question is: are you on a strict gluten free diet, and are you feeling better and healthier?

If you are, you don't need to "convince" any doctors, you don't need their blessing, certainly not their attitude.   It is your own body, if you know that gluten makes you feel bad, don't eat it.

My daughter was diagnosed 4 years ago.   We haven't seen our GI doctor in 3+ years.   Celiac disease does not require medication.   You self medicate through a gluten free lifestyle.

BUT...if you have been on a gluten free diet for years now, and still have issues, then you might want to be open to listen to the GI doctor about other possibility (perhaps in addition to celiac) that could be giving you health problems.

Oh, definitely. I'm not dismissive of the Crohn's diagnosis, but I'm just confused why gluten intolerance is so out of the question to doctors.

When I ate wheat for two days leading up to my gastro procedures, I developed itchy hands - a symptom I didn't even know existed. I also eat an extremely healthy but limited diet, and every time I get sick again, I look at anything different I ate during that period and inevitably find that I got contaminated.

The tooth enamel is another dead giveaway. As far as I know, no other disease causes the tops of the teeth to die off like that. When I asked one doctor about it, he made a comment about my "lifestyle." Meanwhile, I've always been an obsessive flosser and tooth brusher and have only had a couple cavities in my entire life.

Thanks for the advice!

44 minutes ago, gluten-free-Cheetah Cub said:

 

 

[moleface]

13 minutes ago, kareng said:

You have Chrohns disease and the doctor isn't doing anything about it?  chrohn's  is a serious life threatening disease .  Celiac is serious, but not like  Crohn's.  

 

 

.  

Yeah, I'm surprised too. I wasn't even aware that it was such a serious disease - despite the fact that doctors apparently think I'm some WebMD-reading fad dieter, I almost never worry about my health. As long as I'm taking good care of myself, I consider everything else to be beyond my control. I assumed that it wasn't that big of a deal because I didn't think a doctor would just discharge me to my own devices after giving a serious diagnosis.

I spoke to a friend who's a nurse, and she thinks that the issue is that I currently live in a small town. Small communities tend to lag behind large cities socially, so I'd assume that the same applies to the medical field. There's actually a weird bias against health food here - at jobs, I get ridiculed by coworkers for being spotted eating fruit salad or whatever on my lunch break. I suspect that most doctors around here consider the gluten free diet to be a "liberal" health food fad.

Not only that, but I only recently got health insurance and I still go to the local sliding scale health clinic for care. I'm assuming that the quality of care provided at a public clinic must pale in comparison to a normal doctor.  I've been turned away a couple times because the doctors there tell me I have no record of iritis or Crohn's. Last time this happened, I asked them to check my charts, and they came back 10 minutes later saying there was no record of it. This same doctor ordered an impromptu blood test and then mailed me a passive-aggressive letter (they NEVER mail letters) telling me my blood tests were "fine". I'm assuming this is because I reported him to the front desk for refusing to treat my iritis, and he caught wind of it. I've gotten iritis once or twice a year since 2011, and the symptoms are impossible to mistake for something else, yet despite my history most doctors tell me I'm "self diagnosing" when I come to them during a flare-up. That same doctor changed the diagnosis from iritis to "red eye", and I ended up sustaining permanent vision damage after having iritis for several months. My eye on that side no longer dilates, for whatever reason. Weird stuff.

I think the issue is that somehow "hypochondria" got put on my charts. Once you get diagnosed with that, it's the kiss of death. Doctors seem to think that a hypochondria diagnosis trumps all other evidence. I hate to say it, but I'm really starting to hate doctors after going through this. I got sick 7 years ago and I've all but given up trying to get help after these frustrating experiences.

[GF-Cheetah Cub]

I agree.   What you need is a good doctor.   You shouldn't have to worry about how to convince a doctor about feeling sick and helpless.

Crohn's  is indeed a very serious disease, and even more difficult to control than celiac.   People with Crohn's  tend to avoid a lot of food, including gluten.

Good luck to you!

[Jmg]

Hi moleface and welcome!

I found your posts a tough read because I felt like I could've written them myself. I was raised to think of the doctor as all knowing and it's only through painful experience that I've taken them down from that childish pedestal and look at them dispassionately as either good, (rare) bad, (less rare) or mediocre (most of them). To be fair this now matches up to the medical students I knew at University... 

Where celiac / gluten sensitivity is concerned however there's an additional ignorance factor to take in. Many of them have had little training. I saw one estimated they received half a day on celiac etc during their 7 year training period. I've had doctors assure me that one week on gluten is enough for the blood test to be accurate. Later finding out it was guess work on their part. There are so many bizarre ways that the condition can manifest and every case seems different.

I don't have any easy answers and my experience of US healthcare is limited but suggest.

Firstly, you need a fresh start with a good doctor and the Crohns is serious and needs treatment. Do the research, find a doctor that references celiac or intolerance issues, looks for online reviews, travel if necessary and write them a short letter detailing your previous experiences, the pain you are currently in and your need for help. You need and deserve good caring medical care and if you're upfront about past issues a good doctor will look to help. If they don't or refuse then you know they weren't any good in the first instance.  

Second, I wouldn't even bother opening up the celiac or gluten sensitive box. You've excluded gluten from your diet a long time ago and you're not going back to it? So, just say:

'For your reference, years ago following health problems I decided to exclude gluten from my diet and I noticed a very significant response from my body. I did pursue medical confirmation but unfortunately the advice I was given at the time turned out to be incorrect and my subsequent negative diagnosis may not be reliable although my endoscopy did reveal other issues which may be related. Given my positive response to the gluten free diet I continue to follow it to this day and given there's no treatment available other than the diet I already follow I'm not concerned about chasing a celiac diagnosis.'  

Document everything. Record visits, write brief notes. Before a consult have your notes in order and have any questions you have listed as concisely as possible.

Hi Dr I have noticed

Symptom 1, duration, Symptom 2, duration, Symptom 3, duration

Be concise, be organised, be polite, but do ask questions if you're not getting listened to and don't be fobbed off. Ask a closed question if you're not getting anywere. ie. Doctor given symptom 1,2 and 3 can you please explain to me how you have excluded Crohns as a potential diagnosis?

Finally you can take some advice from the ancient stoic philosophers and manage your own expectations to minimise the stress doctor visit causes. You won't get a whip smart diagnostician from 'House' although you may get one with his people skills  I look at them now like mechanics. Some of them are better than others at different things and the small town guy who fixes every different type of car deserves respect but may not be the best person at recognising issues with an obscure Italian car from the late 70's. Just get what you can from them but this:

55 minutes ago, gluten-free-Cheetah Cub said:

I agree.   What you need is a good doctor.   You shouldn't have to worry about how to convince a doctor about feeling sick and helpless.

should be a bare minimum. If you're not getting that move on until you do.  

Wishing you the best of luck!

Matt

 

[moleface]

11 hours ago, Jmg said:

Hi moleface and welcome!

I found your posts a tough read because I felt like I could've written them myself. I was raised to think of the doctor as all knowing and it's only through painful experience that I've taken them down from that childish pedestal and look at them dispassionately as either good, (rare) bad, (less rare) or mediocre (most of them). To be fair this now matches up to the medical students I knew at University... 

Where celiac / gluten sensitivity is concerned however there's an additional ignorance factor to take in. Many of them have had little training. I saw one estimated they received half a day on celiac etc during their 7 year training period. I've had doctors assure me that one week on gluten is enough for the blood test to be accurate. Later finding out it was guess work on their part. There are so many bizarre ways that the condition can manifest and every case seems different.

I don't have any easy answers and my experience of US healthcare is limited but suggest.

Firstly, you need a fresh start with a good doctor and the Crohns is serious and needs treatment. Do the research, find a doctor that references celiac or intolerance issues, looks for online reviews, travel if necessary and write them a short letter detailing your previous experiences, the pain you are currently in and your need for help. You need and deserve good caring medical care and if you're upfront about past issues a good doctor will look to help. If they don't or refuse then you know they weren't any good in the first instance.  

Second, I wouldn't even bother opening up the celiac or gluten sensitive box. You've excluded gluten from your diet a long time ago and you're not going back to it? So, just say:

'For your reference, years ago following health problems I decided to exclude gluten from my diet and I noticed a very significant response from my body. I did pursue medical confirmation but unfortunately the advice I was given at the time turned out to be incorrect and my subsequent negative diagnosis may not be reliable although my endoscopy did reveal other issues which may be related. Given my positive response to the gluten free diet I continue to follow it to this day and given there's no treatment available other than the diet I already follow I'm not concerned about chasing a celiac diagnosis.'  

Document everything. Record visits, write brief notes. Before a consult have your notes in order and have any questions you have listed as concisely as possible.

Hi Dr I have noticed

Symptom 1, duration, Symptom 2, duration, Symptom 3, duration

Be concise, be organised, be polite, but do ask questions if you're not getting listened to and don't be fobbed off. Ask a closed question if you're not getting anywere. ie. Doctor given symptom 1,2 and 3 can you please explain to me how you have excluded Crohns as a potential diagnosis?

Finally you can take some advice from the ancient stoic philosophers and manage your own expectations to minimise the stress doctor visit causes. You won't get a whip smart diagnostician from 'House' although you may get one with his people skills  I look at them now like mechanics. Some of them are better than others at different things and the small town guy who fixes every different type of car deserves respect but may not be the best person at recognising issues with an obscure Italian car from the late 70's. Just get what you can from them but this:

should be a bare minimum. If you're not getting that move on until you do.  

Wishing you the best of luck!

Matt

 

Thanks for the advice and support!

I go out of my way to avoid saying anything that could be construed as "self diagnosis," but I end up being forced to gently suggest the possibility of gluten intolerance once the doctors seem baffled by my symptoms. Especially when I point to my teeth and get comments about my "lifestyle" - at that point, I'm just defending my honor in the face of people who seem to be suggesting that I don't brush my teeth and/or do meth. My teeth are actually my biggest issue. If I wasn't being blamed for my missing tooth enamel, I wouldn't bother trying to convince anyone that I have issues with gluten.

Re: Crohn's disease - as far as I know, the disease is idiopathic. From what I understand, Crohn's is just a name for systemic autoimmune inflammation that affects the gastro system. So considering that I react so strongly to gluten, I'd assume that my condition is essentially "end stage" inflammation caused by a lifetime of heavy gluten exposure. Or I may suffer from multiple food sensitivity, though I don't anticipate any doctors willing to explore this possibility. My symptoms eventually improved once I went gluten-free, at least in the sense that I have constant diarrhea instead of bloating and constipation. Whenever I eat gluten by mistake, the telltale symptom is that I get stopped up for a day or two.

I guess I shouldn't be surprised that doctors can be so irrational - I mean, this is the same group of people who tell themselves that free lobster dinners and medical symposiums held near golf courses aren't just transparent drug company bribes. It's still infuriating that these people literally hold my life in their hands though.

What about discretely recording audio of the visits on my phone? Most doctors I've seen play the hypochondria card, but one doctor who DID take me seriously instead told me I was delusional for thinking that other doctors were so dismissive. I'd like hard evidence that I'm not behaving irrationally during appointments. I feel that most physicians will bend the facts to make the patient the problem, if the alternative is to admit that a fellow doctor may have made a mistake. The medical field is shockingly cult-like.

[moleface]

As a quick follow-up, I wanted to say that I'm trying once again to find a doctor who will take me seriously, and I'm hoping that hedging my wording during visits will yield better results. If not, I'm pretty much at a complete loss for what to do anymore. I'll post my results to this thread once I've gone to some appointments.

I developed painful iritis/uveitis again this week but I still haven't gone to a doctor. I'm not sure why it's considered "self diagnosing" to assume that I have iritis again, especially since I've had it yearly for the better part of a decade, plus the fact that the symptoms are always very distinct. In every one of these cases, I brought copies of my previous iritis diagnoses to the first visit, and my suspicion was always confirmed by a specialist during the subsequent appointment. Not sure why doctors are still so quick to think I'm imagining everything, even after repeatedly being proven wrong through medical tests.

I'm about as far from a hypochondriac as someone can get. I don't even like going to doctors - until I had medical insurance, I went twice in 20 years. Over the last decade, I broke several bones while out biking and running, yet always just wrapped up the injury and waited for it to heal without any professional medical treatment. Then the rare doctors who DO take me seriously say that it's my fault that I'm so sick because I "refuse" to go to doctors. I feel that it's lose-lose, no matter what I do.

 

If this final attempt to find a competent doctor falls flat, I'm considering dropping out of the medical system altogether. If I try to deal with it on my own, at least I wouldn't have to deal with wealthy "3 martini lunch" golfer types literally laughing at me,

[chrissy-b]

I have only been dismissed by one doctor re: celiac, but everything else you have written sounds like my experience with doctors in general. 

I don't know if it is necessarily your small town because I had terrible experiences in San Francisco and LA. It took me 4 years to diagnose a torn ligament in my hip (which occurred because I was hit by an SUV in a crosswalk) because no one would believe my symptoms. I had a pinched nerve under my piriformis muscle which was alleviated with botox injections AND bursitis which was alleviated with a few rounds of steroid injections, but two different docs told me I was both too flexible to have a pinched nerve and too young to have bursitis. One doctor even diagnosed me with fibromyalgia. And it's not like they didn't see my medical records from my accident that showed where I was hit, how far I flew in the air and where (and how) I landed on the pavement. X-rays and CTs showed clear injuries to my neck, lower back, and pelvis. 

"You still have pain in your lower back and hip, and you're tired all the time on the 5mg of Norco three times a day and would like to NOT take those meds anymore? Hmmm, let me see... Here's a referral to a psychiatrist." <--- that was my pain management doctor.

TL;DR -- I completely get how frustrating it is when doctors don't listen to you and treat you like your symptoms aren't real. The best advice I have is to keep going to these appointments and if they do not help, get a referral to someone else. It took me going through neuro, chiro, PT, and a host of other specialties until someone said, "Hey, let's stick a camera in her hip joint!" which finally showed the HUGE tear in my ligament and they approved me for surgery (which alleviated almost all of my pain by the way). It may take forever, but unfortunately, I haven't found a way to talk to doctors that makes them actually hear you. You kind of have to play dumb and just let them lead you. At some point, you will find a doctor who cares and who is willing to help you heal. 

[moleface]

On 4/23/2018 at 1:30 PM, chrissy-b said:

I have only been dismissed by one doctor re: celiac, but everything else you have written sounds like my experience with doctors in general. 

I don't know if it is necessarily your small town because I had terrible experiences in San Francisco and LA. It took me 4 years to diagnose a torn ligament in my hip (which occurred because I was hit by an SUV in a crosswalk) because no one would believe my symptoms. I had a pinched nerve under my piriformis muscle which was alleviated with botox injections AND bursitis which was alleviated with a few rounds of steroid injections, but two different docs told me I was both too flexible to have a pinched nerve and too young to have bursitis. One doctor even diagnosed me with fibromyalgia. And it's not like they didn't see my medical records from my accident that showed where I was hit, how far I flew in the air and where (and how) I landed on the pavement. X-rays and CTs showed clear injuries to my neck, lower back, and pelvis. 

"You still have pain in your lower back and hip, and you're tired all the time on the 5mg of Norco three times a day and would like to NOT take those meds anymore? Hmmm, let me see... Here's a referral to a psychiatrist." <--- that was my pain management doctor.

TL;DR -- I completely get how frustrating it is when doctors don't listen to you and treat you like your symptoms aren't real. The best advice I have is to keep going to these appointments and if they do not help, get a referral to someone else. It took me going through neuro, chiro, PT, and a host of other specialties until someone said, "Hey, let's stick a camera in her hip joint!" which finally showed the HUGE tear in my ligament and they approved me for surgery (which alleviated almost all of my pain by the way). It may take forever, but unfortunately, I haven't found a way to talk to doctors that makes them actually hear you. You kind of have to play dumb and just let them lead you. At some point, you will find a doctor who cares and who is willing to help you heal. 

Thank you for the advice!

I'm so sorry that you had to deal with that. It makes me feel less alone to read peoples' medical horror stories online, but I hate to think of the potentially millions of people who are suffering because of the shortsighted egomania of doctors.

You're right that I need to play dumb - I realized years ago that doctors take it as a personal affront if a patient doesn't infantalize himself. Still, I get the distinct impression that these golfing yuppies are just offended by the idea that a lowly peasant could possibly know something that they don't. That attitude would be bad enough, but peoples' lives are literally being destroyed by it. Sometimes I get so frustrated and angry that I'd rather just continue rotting away from the inside out than subject myself to that smug condescension any longer.

Even before my issues with my gastro disease, I had similar experiences with other health problems. I had necrotizing strep I'd been carrying for more than half a year, and exactly two weeks before I ended up hospitalized with a collapsed lung, an ER doctor told me I was suffering from  "allergies." When I brought this up with the doctors in the hospital, they insisted that I must have developed pneumonia in the two weeks between the initial ER visit and my hospitalization. Yeah, sure - in two weeks my lungs abruptly developed abscesses and filled up with sacs of pus and blood.

After my lung surgery, I spent the next four months coughing up fluid until I gagged. My family literally begged me to return to the doctor, which I was hesitant to do because I still didn't have insurance. The E.R. doctor told me matter-of-factly that "strep can't cause pneumonia", and when I lifted up my shirt and showed him the scars from the lobectomy, he just stared, said nothing, and then changed the subject. Keep in mind, this is the exact same hospital where the surgery had been done several months prior. As I was leaving, I heard the doctor who'd seen me talking to the nurses - "Well, if he doesn't trust the staff's expertise, then I don't know what to TELL him...". I wasn't even being difficult or forceful - the issue seemed to be that I had the audacity to politely disagree with the all-knowing doctor.

I know I'm only hurting myself if I spend every day getting violent diarrhea with full-body inflammation, but part of me wants to bail altogether. The frustration of dealing with these doctors makes me feel like I'm losing my mind. I feel like I have to grit my teeth and politely agree when people are condescendingly lecturing me that the sky is green. At a certain point, when everyone around me is telling me to doubt my own perception, I can't help but let serious self-doubt seep into my psyche. It's so frustrating. I won't even hedge my words anymore - I legitimately hate doctors now. These are the same types who would've snickered at anyone who disagreed with lobotomies back in the 50s or 60s.

[moleface]

I just wanted to bookend this old thread with some updated info.

To sum things up, sometimes it really isn't you. Sometimes you just happened to get a particularly bad doctor through sheer luck of the draw.

Today I finally went to another gastro specialist. When I mentioned the previous gastro doctor's name, the new doctor got an odd look on her face and informed me that they've been dealing with a lot of this guy's former patients lately. She told me that he just abruptly closed his practice a couple months ago, and oddly enough he isn't even responding to any of their office's requests for patient medical records. He essentially just disappeared.

When I got home, on a hunch I googled his full name along with the word "malpractice." Bingo.

A few years ago, he told a local woman that a grape-sized lump in her colon was "normal" and assured her that nothing was wrong with her. He didn't even bother doing a biopsy on the mass. She later was diagnosed with stage four colon cancer with a 15% chance of survival. This went to court a year after I had my bad experience with him. She won $700,000 in the judgment.

I found another piece of info from a few months ago - he was trying to move his practice out of state, and had his license denied at the new location for lying about his suspended medical license and the malpractice suit.

When I later told an eye specialist that I wasn't undergoing treatment for Crohn's disease because the gastro doctor was dismissive and hadn't offered follow-up care after diagnosing me, he outright told me I was delusional. He literally sneered and told me I was imagining that I'd been mistreated. He said I was "unstable."

It feels good to be vindicated, but on the other hand, it's frightening how everyone defended this guy. I recently had a family member insist that *I* was the problem.

 

[GFinDC]

Wow, it's good you got away from him then!

[Ennis-TX]

1 hour ago, moleface said:

I just wanted to bookend this old thread with some updated info.

To sum things up, sometimes it really isn't you. Sometimes you just happened to get a particularly bad doctor through sheer luck of the draw.

Today I finally went to another gastro specialist. When I mentioned the previous gastro doctor's name, the new doctor got an odd look on her face and informed me that they've been dealing with a lot of this guy's former patients lately. She told me that he just abruptly closed his practice a couple months ago, and oddly enough he isn't even responding to any of their office's requests for patient medical records. He essentially just disappeared.

When I got home, on a hunch I googled his full name along with the word "malpractice." Bingo.

A few years ago, he told a local woman that a grape-sized lump in her colon was "normal" and assured her that nothing was wrong with her. He didn't even bother doing a biopsy on the mass. She later was diagnosed with stage four colon cancer with a 15% chance of survival. This went to court a year after I had my bad experience with him. She won $700,000 in the judgment.

I found another piece of info from a few months ago - he was trying to move his practice out of state, and had his license denied at the new location for lying about his suspended medical license and the malpractice suit.

When I later told an eye specialist that I wasn't undergoing treatment for Crohn's disease because the gastro doctor was dismissive and hadn't offered follow-up care after diagnosing me, he outright told me I was delusional. He literally sneered and told me I was imagining that I'd been mistreated. He said I was "unstable."

It feels good to be vindicated, but on the other hand, it's frightening how everyone defended this guy. I recently had a family member insist that *I* was the problem.

 

Many of us deal with doctor issues and diagnosis, you got a really bad draw indeed. Most doctors dismiss Celiac as their is no money in the cure for them IE a gluten free diet and not medications.

Keep up updated on your new doctor and testing, good to see you finally found one that listens and can help, I got through on doc #5 I think it was.

[RMJ]

I hooe you can get some answers with your new GI doc.

[moleface]

On 10/18/2018 at 3:31 PM, Ennis_TX said:

Many of us deal with doctor issues and diagnosis, you got a really bad draw indeed. Most doctors dismiss Celiac as their is no money in the cure for them IE a gluten free diet and not medications.

Keep up updated on your new doctor and testing, good to see you finally found one that listens and can help, I got through on doc #5 I think it was.

It's disheartening that so many doctors could be so irrational. If I managed to find this many inept, dismissive doctors in my own limited experience, this sort of thing must be absolutely endemic to the medical system. It's frightening.

Things are actually looking up for the first time in a long while. It was bad enough being violently sick and in constant pain for years on end, but also being dismissed by peers, family, coworkers, and doctors made these issues so much more difficult to deal with. I've been barely hanging on in recent years.

I just got results of a stool test from Enterolabs today, and it shows severe gluten intolerance along with significant problems with soy, eggs, and dairy products. The results also show borderline sensitivity to rice, which I've never even heard of. Oh well - there go most of my sources of complete protein. But it definitely helps shed some light on why my issues didn't resolve when I adopted a gluten-free lifestyle nearly eight years ago. I eat most of that stuff on a daily basis.

[moleface]

Well, after going to the new gastroenterologist, it looks like I was right all along - the first gastro doctor had misdiagnosed celiac as crohn's disease.

I had a new colonoscopy done, which now shows no ulcers, anemia, or inflammation. The new gastroenterologist has the results of the previous colonoscopy and is aware that it found ulcers and heavy inflammation bad enough that the paperwork specifically labeled me "a patient with severe systemic disease", but he can't provide any answer of what caused those symptoms in the first place if I'm not gluten intolerant.  He diagnosed me with the b.s. catch-all term "IBS" and then discharged me from his care because there'd be "no point" to do further testing. He wasn't hostile or rude about it, but it's clear that he thinks I'm a healthy patient wasting his time.

He refused to address the possibility of celiac. I provided him with my Enterolab results, along with proof of my positive celiac blood test, as well as documentation of my autoimmune symptoms (inflamed intestines with ulcers, recurring iritis, swollen joints) and he won't even give a noncommittal answer that it SOUNDS like celiac. He requires an intestinal biopsy after 12 weeks of daily gluten exposure. I tried a "gluten challenge" nearly a year ago and only made it 10 days before I had to stop - my stomach bloated up two pants sizes, my hands swelled up, and I ended up having to get prescription eyedrops for a brutal case of iritis that started on the tenth day. There's no way I'm willing to go through that for three months just so I can prove the obvious.

This is an extraordinarily strong circumstantial case that I'd think would convince just about any jury, but it's not ALL circumstantial - despite this doctor's dismissive attitude towards blood tests and Enterolab genetic testing, both those tests are hard physical evidence that does support a celiac diagnosis. Even without those tests, how does he think I managed to develop intestinal inflammation that was bad enough to mimic crohn's disease if I'm not gluten intolerant? If crohn's disease managed to go into remission on its own without any treatment, I'd be a medical miracle.

I think I figured out why my symptoms never went away after I went gluten-free - I started living with a roommate a year before the original colonoscopy, and I was likely getting heavy cross-contamination from the shared kitchen, cookware, and utensils, hence my worsening symptoms.

I've been following Enterolab's recommendations and cut out soy, eggs, and dairy, and I've also dropped a brand of vitamins that's processed in a facility with wheat but came from a "GMP" facility (which supposedly means they thoroughly clean off the equipment to avoid cross-contamination, but who knows how vigilant factory workers actually are), so hopefully my symptoms will finally recede over the next few months. I originally stabilized within a year of going gluten-free, then I was ok for another year or so until I moved in with a roommate.

Moral of the story? Don't put too much stock in what doctors say. If I came across this much misdiagnosis and mutually exclusive diagnoses from the few doctors I've seen, the medical system must be rife with that sort of thing. If I'd taken doctors' opinions as gospel, I'd currently be taking Humira or whatever for life. I'm so glad I trusted my own judgment and didn't go along with that.

Thanks for listening to me rant. The frustration of dealing with this has been driving me half-insane, and it's helped a lot to vent on this forum.

[RMJ]

There are so many doctors who seem anti-celiac disease and anti-gluten intolerance.  Fortunately these diseases do not require a doctor’s presceiption to treat. I hope your symptoms resolve soon.

[moleface]

4 hours ago, RMJ said:

There are so many doctors who seem anti-celiac disease and anti-gluten intolerance.  Fortunately these diseases do not require a doctor’s presceiption to treat. I hope your symptoms resolve soon.

Yeah, that's the impression I'm getting. If doctors won't acknowledge celiac after all this evidence, I'm pretty sure I'll never be able to convince anyone.  

The irony is that these people are basically telling me I'm deranged for thinking that a doctor could be wrong, while simultaneously telling me that the previous doctor gave a horribly, massively wrong diagnosis. And how did my gastro system get so bad in the first that a doctor could mistake the damage for Crohns? Makes NO sense. 

I just got off the phone with them, and they told me "diarrhea, iritis, and intestinal ulcers can happen for many different reasons, and aren't necessarily related." So it's all a coincidence, even though I have a positive celiac blood test and genetic testing via Enterolabs. The gluten antibody cut-off level for Enterolabs is 10 and I scored over 300, but the gastro doctor refuses to accept Enterolab results.  I didn't ask about my teeth, because I'd literally break down sobbing if they blamed my "lifestyle" when I've always brushed my teeth 3-4x a day. 

I'd press the issue further but I'd likely just get told to get psychiatric help for my "health anxiety". I'm only anxious about my health because I've had daily diarrhea for 8 years and lost enamel on all my teeth. 

I can't believe this Is what the medical system is really like. People must be dying from malpractice every day. This is a silent epidemic. This experience has changed my perspective and I no longer trust any doctors. 

[Dindy]

In my case it took a cardiac doctor telling me I was Celiac.  I was experiencing chest pain and they couldn't find out why, when I went to the Cardiac doctor he said to me you didn't tell me you were Celiac.  My husband and I looked at each other and laughed out loud.  I said I didn't know I was, the doctor responded well 12 years ago you had a positive blood test and biopsy.  Neither doctor informed me of this diagnosis.  So I went 12 years ingesting gluten and further damaging my small intestine.  I too was told I was a hypochondriac and was very disappointed in doctors for most of my life.  I really hope you get some help with all these problems, I am feeling much better but am very susceptible to the smallest ingestion of gluten.  Diarrhea rules my life.  Hang in there...  

[GFinDC]

Hi Moleface,

I think you meant to say you had an endoscopy?  A colonoscopy is not used to diagnose celiac disease, but an endoscopy is.  Endoscopy looks at the first 5 feet or so of the small intestine.

The medical community has an imperfect record for diagnosing celiac disease,  They don't get it right sometimes.  That is probably why most people with celiac disease don't know they have it.

There isn't a lot doctors can do for celiac patients right now.  They can do tests for vitamin deficiencies, or bone loss, lactose intolerance or DH.  But they don't have any $$$ drugs to treat it.

That doesn't keep us from following the gluten-free diet though.  We can eat gluten-free regardless of what the doctors say.  And that is the most important thing for our health to improve.  Some day celiac testing my be much better than today.  We can hope so.

Edited November 30, 2018 by GFinDC

[moleface]

1 hour ago, GFinDC said:

Hi Moleface,

I think you meant to say you had an endoscopy?  A colonoscopy is not used to diagnose celiac disease, but an endoscopy is.  Endoscopy looks at the first 5 feet or so of the small intestine.

The medical community has an imperfect record for diagnosing celiac disease,  They don't get it right sometimes.  That is probably why most people with celiac disease don't know they have it.

There isn't a lot doctors can do for celiac patients right now.  They can do tests for vitamin deficiencies, or bone loss, lactose intolerance or DH.  But they don't have any $$$ drugs to treat it.

That doesn't keep us from following the gluten-free diet though.  We can eat gluten-free regardless of what the doctors say.  And that is the most important thing for our health to improve.  Some day celiac testing my be much better that today.  We can hope so.

Thanks for the clarification, but they didn't do an upper G.I. endoscopy - they did a colonoscopy. This is just further evidence that this new doctor didn't even consider celiac to be a possibility.

The previous gasteroenterologist did an endoscope without me having eaten gluten first, then did a biopsy during the colonoscopy after having me eat gluten for two days.

I pushed this new doctor for an upper scope, but I was told that there'd be "no point" because "everything looks great". I got ahold of a nurse on the phone today and asked some pointed questions, and she told me that the intestinal ulcers, anemia, and inflammation are often caused by "medication" (I sorta assume this is a euphemism for hard drugs), iritis can happen for absolutely no reason, and that "there's no need for further testing." I didn't even bother asking about my teeth because I anticipated a comment about my "lifestyle."

I guess this experience doesn't surprise me, considering that I recently had my teeth fixed by a dentist who wasn't even aware that tooth enamel loss was a symptom of celiac. She kept insisting that it was caused by acid reflux. Acid reflux erosion would be a gradual process, but my teeth all developed missing enamel over the course of literal days. When I was at my sickest back in 2015, I literally woke up one day and found that all my bottom teeth had lost their tops and the yellow dentin was exposed. They definitely weren't like that the previous night or I would have noticed while flossing, plus I always carefully inspected my teeth because I was self-conscious about the missing enamel on the front top teeth.

Anyway, at this point I'm satisfied that I have celiac, based on overwhelming circumstantial evidence, the positive blood test, the recent Enterolab genetic testing, etc. I've mostly been trying to get a concrete diagnosis just so GPs will stop treating me like I'm a fad dieter. I guess I just need to let it go. It's rough though, because I'm required to go to doctors at least a few times a year when I get severe iritis. If I didn't have to deal with that dismissive attitude firsthand, I wouldn't be so bothered by it.

[cyclinglady]

While you may indeed have celiac disease, you could have Crohn’s too.    Damage can be out of reach from both scopes.  My niece was actually diagnosed with Crohn’s by a pill camera.   Crohn’s can and does go into remission for years without treatment.  Eye and joint issues are also linked with Crohn’s.  

The gluten-free diet can not hurt you.  My own hubby went gluten free 18 years ago.  Does he have celiac disease?  We will never know as he does not want to do a challenge.  But doctors have been supportive.  He did get well though and I am concerned that you are still struggling.  It may not just be celiac disease.  

Finally, keep all your medical records.  Every single little lab result, reports, whatever.  Easy to get even from an ER visit.  You might have to pay for them, but it is well worth it.

I hope you feel better soon.  

 

Edited November 30, 2018 by cyclinglady

[Scott Adams]

I'm not sure if you saw this in our FAQ, but:

• An Open Letter to Skeptical Health Care Practitioners

[moleface]

1 hour ago, Scott Adams said:

I'm not sure if you saw this in our FAQ, but:

• An Open Letter to Skeptical Health Care Practitioners

I actually hadn't read that before, but thanks for bringing it to my attention! It's a good summary of how varied the symptoms really are.

I have all the gastro symptoms, but my main issues were always autoimmune - iritis, swollen hands, etc.

Every case is unique, but I haven't found many accounts of symptoms that are like mine. I didn't even have significant bowel issues back when I was eating gluten, besides hard incomplete movements and an inability to gain weight. Weirdly, as soon as I went gluten free I developed diarrhea instead, which hasn't gone away for even a day in nearly 8 years.

Doctors must hear about celiac disease so often from people with vague symptoms, they're inclined just to write off any patient who suggests it.

Ironically, I have a family member who adamantly refuses to believe I could be celiac, even after the positive blood test and all the other evidence (he insisted that I lost my tooth enamel from stress), and now he's into the keto diet, an even bigger fad that's not even associated with a legitimate disease.