Bad Experience With Dr.s?

[Guest mvaught]

Michelle, I read your post and found that you have IC also and adhesions. How are those two issues going for you? Tara

Hey Tara,

well, the implant the i have for the IC works well. i still have problems around my period and when i eat certain foods, etc. (no chocolate ot OJ for me). however, it is really amazing how well that thing works for me. i can actually sleep at night now (i only get up about 4 or 5 times instead of 50 +). as far as adhesions, it is always a battle. i have been told that i need another surgery, but i keep putting it off, because i'm tired of having surgeries (i have to have gum surgery and jaw surgery in the next couple of months - so those including the two bladder surgeries from the fall will be 4 surgeries just the past 9 months or so). so, i'm not really sure what to do about that. i'm tired of going to doctors and tired of fighting with my insurance company. i have a cyst that keeps growing too (which is probably the endo - as that is what it was the last time i had one and it is on the same ovary) - again, not sure what to do about that. so, i guess i am answering your question. adhesions are so problematic because removing them can cause more, so it is a guesing game even for the doctors as to what to do with them. so all of these things i don't know what to do with - i am just feeling really blessed that i finally figured out the celiac. i also am so thankful that even though the implant isn't a cure for IC, it really has helped. as sick of surgeries as i feel, i am so glad that i had it done - it really changed my life. thank you so much for asking

-heart,

michelle

[whitball]

Hey Tara,

well, the implant the i have for the IC works well. i still have problems around my period and when i eat certain foods, etc. (no chocolate ot OJ for me). however, it is really amazing how well that thing works for me. i can actually sleep at night now (i only get up about 4 or 5 times instead of 50 +). as far as adhesions, it is always a battle. i have been told that i need another surgery, but i keep putting it off, because i'm tired of having surgeries (i have to have gum surgery and jaw surgery in the next couple of months - so those including the two bladder surgeries from the fall will be 4 surgeries just the past 9 months or so). so, i'm not really sure what to do about that. i'm tired of going to doctors and tired of fighting with my insurance company. i have a cyst that keeps growing too (which is probably the endo - as that is what it was the last time i had one and it is on the same ovary) - again, not sure what to do about that. so, i guess i am answering your question. adhesions are so problematic because removing them can cause more, so it is a guesing game even for the doctors as to what to do with them. so all of these things i don't know what to do with - i am just feeling really blessed that i finally figured out the celiac. i also am so thankful that even though the implant isn't a cure for IC, it really has helped. as sick of surgeries as i feel, i am so glad that i had it done - it really changed my life. thank you so much for asking

-heart,

michelle

I'm glad things are a bit better for you. I also have adhesions and they are currently messing with my bowels. very painful. No surgery for me either, yet... IC is bad at times especially with apples and oj. take care. Tara

[Guest mvaught]

I'm glad things are a bit better for you. I also have adhesions and they are currently messing with my bowels. very painful. No surgery for me either, yet... IC is bad at times especially with apples and oj. take care. Tara

yeah - i hear you...i really try to stay away fomr all fruit, although blueberries are ok.

[SAS]

I can relate to so many of the experiences on this forum re doctors and diagnostic problems.

I finally was diagnosed just before Christmas 2005 by Enterolab (Antibody + both major Celiac genes). The broad symptom range that I had experienced over the years is truly astounding - but NOW that I look back over my medical history of CLUES --- it's all beginning to make sense since I can relate to so many celiacs re symptomologies that seemed to be totally unconnected. I have never had diahrrea as a symptom but the bloating was a constant with me.

I keep wondering how doctor after doctor here in Canada kept missing the diagnosis while symptom after symptom accumulated in my medical history. My Gluten Sensitivity must have kicked in after my son was born 30 yrs. ago. I'm told this is fairly common.

After a delivery that "would not progress" and required an emergency Cesarean (clue #1)

I proceeded to become anemic with an anemia that no doctor could ever seem to get under control

(clue #2) for the next 30 yrs.

My health appeared to stabilize somewhat for a few years and then suddenly there was a cascade of seemingly inexplicable health problems as I approached mid-life.

adult-onset asthma (clue #3)

infections that did not heal normally (clue #4),

serious mineral deficiencies found by a Naturopath despite years of mineral supplementation (clue #5)

suspicious lymph node swelling (clue #6)

Bio-print -- an extensive blood planel indicated I was not absorbing protein and actually suggested I might be anorexic or suffering from a wasting disease (while eating organically and taking supplements) (clue #7) (this doc left his practice and the office would not tell me where his new practice was (BIZARRE))

low serum potassium shows up on two separate occasions (clue #8)

by about the 5th hair analysis my mineral levels were so unbelievably low that I asked to have the test repeated and my Naturopath had expressed grave concerns for my health (clue #9)

broken ankle that according to my G.P. happened with "minimal trauma" (clue #10)

seriously low zinc levels are found when I ask my G.P. to test (but she forgets to give me the results (Aug 04) -(clue #11)

By the following February I had developed a serious eye infection that lasted from Feb 2006 to June 2006 (clue #12) - my ophthalmologist remarked that this type of infection is usually only found in immune-compromised individuals

A strong family history of Cancer (both sides) (clue #13)

Plus about 8 yrs ago, a diagnosis of Endometriosis (a disease believed to be attributable to hormone dominance) (clue #14)

Finally I developed multiple allergies to drugs, chemicals, etc. (clue #15)

The problem as I see it now - was that the naturopathic, or complementary type docs would do a test that might indicate further investigation was necessary, but when I would bring this info to my G.P. it was generally scoffed at - they oftentimes didn't recognize the testing as a valid form of test or they insisted on doing their own testing - or both. Since Naturopaths in most provinces are prohibited from doing blood tests, I was caught in the middle.

Even now that I've shown my GI my test results from Enterolab I'm being told that I need to have the intestinal biopsy to be certain. Frankly, I just don't buy this claim, having read the Enterolab site.

While I am only a few months into the Celiac diet and I'm sure my body needs to heal for some time yet, my husband tells me I have color in my face for the first time since he's known me. It's almost spooky that years ago I used to say to my husband, "If my health problems are in any way related to a food allergy, then it's a REALLY COMMON EVERYDAY FOOD that is the allergen" because I so rarely felt well !!!

I have confidence that my health will improve even more over time - I just wish I had found Enterolab earlier - Dr. Fine's work is ahead of its time - hopefully, we, here in Canada will catch up -- and not remain in the neanderthal age of medical diagnostics.

P.S. I'd like to hear from others in Canada who may have had similar experiences with diagnostics.

P.P.S. I've just noticed Canadian Karen's post of April 2/2006 - if you want my advice? - have the Enterolab test done - I'm so glad I did!!! I just don't think celiac is being diagnosed anywhere near as early as it should be here - and I know other celiacs who agree with me.

[AnitaV]

This look like an old thread, but it really hit home.

FYI, I have not been diagnosed. I have had the symptoms since age 4 and I am now 51.

Two months ago, I was chewed out by an office manager. Why? "You are perfectly healthy," she yelled at me over the phone. Yes, indeed, she yelled. "I am not going to give you an appointment when the doctor has sick people who need his time." The doctor was an endocrinologist. I only wanted to know if the doctor thought my problem was endocrinological or if I should move on to another specialist. I wasn't even allowed an answer to that question.

With that, I wiped the blood off my constantly flowing nose, wrapped my wrist a little tighter, and intensified my Internet search for a diagnosis and found celiac disease.

I cannot count the number of doctors who have dropped me from their case load, accused me of malingering, and generally ignored me while I went through intense periods of symptoms.

Mother and my son have had similar experiences. Whenever the docs cannot find a diagnosis, they send us to a psychologist and rant about how we are not willing to try to get well if we do not get therapy.

Do any of these doctors worry that they are wasting my time? I could be moving on to a doctor who cares!

sigh.

[flagbabyds]

I am p***ed that my GI 14 years ago thought I had a muscle problem, did an unnecessssary muscle biopsy, and that will probably keep me from playing soccer ever again.

[Guest mmc]

I talked to my mother today, and although this has nothing to do with celiac (that we know), it made me gag. My mom's neck has been swollen for 5 years, she recently changed doctors and the new dr thought it would be good to get an ultrasound of her thyroid. (YEAH! FINALLY A GOOD IDEA) Well, she had the ultrasound at the beginning of last week...finally got the results back.

You won't believe this!

He said, "The ultrasound showed a cyst on your thyroid, but that's normal."

CYST! NORMAL??? ARE YOU KIDDING ME?

When my mom asked for a refferal to a specialist, he said he could give her the name of an expert, but would advise her insurance company that she DID NOT need to see a specialist, so she would have to handle the costs herself.

WHAT???

The whole experience is not normal! What a *o***r-***k**g idiot.

[2kids4me]

I have never written about this before - probably becasue now I do have competent doctors who listen but not before I told off a neurologist and switched pediatricians. I have survived medication errors, residents who thought they knew more than nurses and a doctor who missed classic hypothyroidism in a child until myxedema had developed.

Where do I start? The birth of my first child (girl), induced at 36 weeks because of dropping insulin requirements and lack of fetal movement. Things went ok until final stage of labour, I had been pushing for an hour, the nurse was getting nasty with the resident pushing info in front of her saying - deceleration and fetal distress, we need to deliver NOW. OB and doctor on call was doing an emerg c-section - he walks in... has brief chat with nurse, looks at fetal heart rate, pushed resident out of the way and does immediate episiotomy and delivery with NICU team called . Limp baby delivered and whisked off to NICU for chest films, IV and a 48 hour stay. meanwhile resident feels cheated out of catching baby and pesters OB to suture the episiotomy. Ended up with Step B infection and ill afterwards, luckily baby did not get infected with Strep B. Daughter did not walk until she was 4, MRI of brain shows cerebral atrophy, probably birth injury but "inconclusive". Needed physical therapy, speech therapy, occupational therapy. Today you'd never know - she is doing awesome despite rough start. Between 3 and 4 this girl dropped from the 70 percentile in height to BELOW zero, fatigue and constipation dismisse as related to brain issues .. after 2 visits a few months apart , I went in for third time and said - this child sleeps form 8pm - 8 a.m, gets up and goes back to sleep from 11 a.m. - 2 p.m. then stays awake and falls asleep again between 5 and 6 then to bed at 8... plus she needed microlax enemas to have a poo every 3 days. Suddenly I get urgent referral to endocrinologist who - upon seeing her - orders stat blood work. takes pictures (I found out later classic mxyedema had developed) and by 4 pm that day we were giving thyroid replacement hormones.

Neurologist then says - oh well, now we know why she has hypotonia and delays - her thyroid - EXCEPT that thyroid was normal when measured at 2 after significant motor delays. AAARGGH the doc didnt seem to get that someone can have more than one issue.

Then I gave birth to my son - another induction at 36 weeks - thinking I was in high risk ward and competent staff, an order was given for 10 units regular insulin in a 100 ml piggyback drip attached to a 1 litre drip already in... was given 10 cc!!! yes that would be 1000 units , it was 2 a.m. , husband came back and thought I didnt look right... first thing I remember is a room full of people and 2 doctors standing over me asking "How much insulin did this girl get??" My ashen faced husband holds up an empty insulin bottle and says - this was full when I left to get coffee. It took 13 preloaded glucose syringes and 10 hours to stabalize my blood glucose, Nurse who made error quit next morning. Luckily when my son was born, the placenta had protected him with its own supply of glycogen (glucose). Odd how he was the one who became diabetic at 9 ( I always wonder if that did something to his system).

I question doctors all the time and I dont care of they shake their head, they are not all powerful and they have to answer to me. If the answers dont make sense, I ask for clarity, If I feel dismissed I ask for 2nd opinion.

The only one that can watch out for you or your kids - is YOU.

[tailivoti]

My grandmother & 1/2 sister both have celiac. When I was 8 months pregnant with my son, I developed shingles. Since having him, I developed an intolerance to gluten. I also went to my doctor who reffered me to a gi doc but wasn't able to get in for 3 months. I decided to completely eliminate gluten from my diet on my own & my symptoms were gone.  My son is now 4 & has been struggling with iron deficiency anemia. His doctors had it under control for the past year. I have recently noticed some of his symptoms returning so I had them order a blood test. We got the results and his ferritin is low. They put him back on iron & referred him to a gi doctor(who we can't get into for a month!!)  He too is very suseptable to rashes & constantly has bloating. I am desperately searching for answers. Feedback from anyone who has had similar problems would be greatly appreciated.

[Pepper88]

This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case.

My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.  

I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.

Edited June 23, 2018 by Pepper88

[moleface]

Statistically, people with autoimmune diseases are likely to get dismissed by multiple doctors before receiving an accurate diagnosis. I think part of the issue is that the gluten-free lifestyle is viewed (somewhat accurately) as a "fad diet."

I too dismissed the gluten free diet,, and I only stumbled on it randomly after I got a bout of iritis after a year of painful swollen hands. I didn't even have severe gastro problems at the time, besides constant constipation that I attributed to stress. Initially the doctors suspected rheumatoid arthritis, but I already went several thousand dollars in medical debt to get the iritis treated, and wasn't eager to go to more doctors uninsured. About two weeks after my iritis diagnosis, I suddenly lost a huge chunk of enamel on one of my front teeth. I googled something like "swollen joints, iritis, tooth enamel loss" and stumbled on celiac disease. It's been seven years of nightmare frustration since then.

I think doctors expect us to infantalize ourselves and defer exclusively to their judgment. So if you suggest celiac as a possibility, even if you have all the textbook symptoms, doctors aren't too eager to let some peasant dictate their own diagnosis.

Mindbogglingly, the stigma against "self diagnosis" is so strong among doctors, even though I later received a positive blood test during an unrelated hospital stay, no subsequent doctors will acknowledge the possibility of celiac, even gastro doctors. They always give me an impromptu blood test, and when I ask if it's able to detect gluten intolerance without me having eaten gluten first, doctors give me non-answers, then a 10 minute lecture once the test comes back negative.  Infuriating.

I've stopped going to doctors altogether after this treatment.

On edit: To clarify, I DO have serious gastro issues, and a gastro doctor found iron deficient anemia and multiple ulcers in my duoedenum and small intestine. But the issue was far less bothersome before I went gluten-free - I just felt gross and constipated all the time, whereas after detoxing from gluten, I suddenly faced 4 hours of diarrhea every single day. This has been going on now for more than 7 years, and my entire schedule revolves around waking up 4 hours early to allow myself time to get violently sick. Every time I eat gluten, the symptoms revert back to constipation.

[rami999]

nope i haven't but i might have soon haha