I'm hoping I can be clear as I write this. I have been on the proverbial merry-go-round of misdiagnosis for about 11 years.
After recently, and finally, being diagnosed with Celiac Disease (I had to get a tip from a friend who's married to a doctor, then do the research online, then bring it in and put it under my doctor's nose) there are many things I was previously diagnosed with that I believe might quite possibly be either:
a) other symptoms of Celiac Sprue
b) the consequence of undiagnosed Celiac Disease since childhood.
By the way, I have read in several places that typical signs of Celiac Sprue in children is distended or bloated stomach combined with flattened gluteous maximus: i.e. butt cheeks. This is a quite fair description of me as a child.
Before I give this list, here's a brief bio: I'm a 48 y.o. Caucasian female with Scottish, Irish, English, German and Welsh ancestry. I'm also post-menopausal, having gone through menopause very early starting at 35 years old.
Here's the list of my "other" diagnoses I think are linked to the previously undiagnosed Celiac Disease (a.k.a. Sprue):
-Degenerative Disc Disease (condition)
-Weakness and fatigue
The thing that really riled me was when I went for a colonoscopy (after 10 years of increasingly out-of-control diarrhea) and the gastroenterologist who performed it said he saw "signs of long term laxative use". I laughed incredulously and asked why on earth I would take a laxative when I was in there trying to find a cure for diarrhea so bad I was living in a diaper? His response was to ask if I drank herbal tea! The answer: no. Herbal supplements? No. Then he told me I have diverticulosis in my colon but everything else was fine.
Here's what I think: the appearance of "long term laxative use" in the colon is most likely the end, as it were, of the starting point of flattened villi in the small intestine found in Celiac patients. When I was told I would be going to him for the endoscopy part of diagnosis of Celiac, I declined. What a fool! He had my answers, why didn't he come up with more questions about WHY he was seeing these odd signs, which OBVIOUSLY had something to do with my constant diarrhea and loss of bowel control? What, is this House M.D. revisited where every doctor assumes he's being lied to? If so, I wish he had at least accused me so I could not only defend myself but search for other reasons for what he saw. That's a bizarre thing to see under a microscope when the patient hasn't touched a laxative in over a decade! What happened to this physician's curiosity or just plain professional ethic to look for answers to this troubling puzzle piece? I was dismissed and sent back to my PCP.
In addition, over a period of 11 years, but most especially the last 3 years, I have gone from an upright-standing, walking-around person to someone in a power wheel chair (loss of upper body strength, swollen painful knees with spurs in them, ruptured disc in my neck and several bulging discs in my lower back). I would think that chronic malabsorption combined with early onset menopause (which has been over for about 7 years now) would be a key suspect.
These would include all the above bone problems (Osteoporosis, Degenerative Disc Disease, Spondylolisthesis, Spondylosis) as well as weakness and fatigue and possibly Diverticulosis. Why is it that I can see the connections but my "medically trained" M.D.'s and specialists can't?
Here's another one for ya, this one was so ridiculous it actually made me laugh:
I show up at my primary care physician's (PCP's) office with a complaint about my neck and shoulder. A month later I have lost use of my shoulder, 3 months after that I've lost use of my arm down to my elbow, and 3 months after that I'm begging my doctor to DO SOMETHING as my entire arm is essentially glued to my body and useless and the pain is interminable at about a level 12 on a 1-10 scale. He doesn't know what's wrong. All he's done is give me Tylenol and Neurontin for pain and sent me to physical therapy. The physical therapist kept remarking on how I had these "adhesions" she would work out on every visit only to have to re-work them out on the next visit only 2 days later. Mind you, she sent her full reports into my PCP and he still didn't have a clue.
I go online (painful thing that was!) and over several months finally dug something up I thought would explain it: Adhesive Capsulitis, otherwise known as "Frozen Shoulder". I take the information in to my PCP and he says "OH! Wow. Maaaaybe....." and sends me to an Orthopedic Surgeon who does an in-office examination and informs me that I have Adhesive Capsulitis, otherwise known as Frozen Shoulder.
AND the worst part is because diagnosis was delayed so long, I had to suffer with it until it broke up of it's own accord, and even with that, I will never have full use of my shoulder again. This took 3 years in my case . I lost my car due to not driving it and it being towed away by the police as my residential parking space is within a city parking lot and the car "must be moved" every 3 days. Of course, I couldn't do that with a useless right arm. So I lost the car and the full use of my shoulder because my doctor is either too stupid or too lazy or too something else to bother figuring this out for me in a timely manner. And a very important fact in this case is that I ran a paid-for, online check on this particular PCP online and it was a glowing report. After I reported him to the clinic's Quality Assurance Committee (important! These can help!) he was investigated and left town 3 days after that investigation was concluded. Yes, picked up his family, walked away from a lucrative 12 year long practice and quietly left town.
Beginning over 25 years ago, it took doctors 8 years to diagnose a disorder I had that was curable in 10 years. Because of that "shortcoming" on the doctor's part, I missed the majority of my only child's growing up. Wrong diagnoses happen all the time in my life. Either my state (CA) is stuffed to the brim with particularly bad doctors, or this happens more often than usual everywhere, I'm not sure which.
Some years ago, I think it was around 1994-1995, about the time the hormones given to generations of women the moment they entered menopause were pulled from the shelf, I also went off those same hormones as well as the rest of all medication I was on (I did it by the book, titrating) I began to check up on every single medication prescription offerred me, especially on interactions BETWEEN the meds I am taking. Numerous times I have had to reject a new prescription because the interaction was drug-drug dangerous with something I had already been prescribed: often by the same doctor.
After all these things, I find it both insulting and unbelievably obtuse to hear physicians continually play the "blame the patient" game on almost every medical complaint that walks into their office.
One could logically place a lucrative bet that one of the following 4 "reasons" will be (initially or repeatedly) used by the doctor as The Cause of virtually any "symptom" you have (including devastating diseases such as cancer and diabetes):
1.) obesity or being overweight
2.) smoking tobacco
4.) lack of enough or the "right kind" of exercise.
If that were true, anyone who is "correct" weight for their height, doesn't smoke tobacco, has a good diet and exercises "correctly" should live illness free. Right? Wrong. I know a guy who has had 7 heart operations and he fits all the above as a "good patient". It's called genes, folks. Think about that a moment.
The truth is, every single doctor, no matter the specialty, insists you fill out ONE (1) form before they will even deign to see you: a Family History of Illnesses and Conditions. Why? Well, because doctors already know that family history (genes) is the reason for numerous illnesses. So my question is why the insistence that everything the patient comes up with must be a lifestyle problem?
In my personal opinion, I think we should start a "blame the lazy doctor" campaign and stop this other nonsense.
To say that one has to be pro-active and one's own advocate in today's mess of a health-system is a gross understatement in my life. I urge any and all who can, to research as much as possible, take written questions in to each doctor, carefully check every prescription, and keep prescription numbers to a minimum: no more than 5 is ideal, though not always possible with people who have more than that many diseases or conditions. However, to those people I would recommend looking for "dual action" type medications: ones that might help 2 things at once to reduce the number of chemicals being poured into an already taxed body.
Also, I recently had a rheumatologist ask me (yes, that was ASK me) if I thought I had Fibromyalgia.
I had to pause, take a breath, then answered "No, you're the doctor here, You make the diagnosis, I don't. You tell me!"
To which he replied "Well, Fibromyalgia is a catch-all diagnosis. I mean, who knows what Fibromyalgia is, anyway?"
If that doesn't convince you to stand up for yourself and treat doctors as skeptically as you would used-car salesmen, I don't know what will.
So, hello to the group here, and I can't believe I haven't settled in here sooner.