Having an illness that can't be diagnosed is killing me and I'm going to fix it my damn self!

In My Humble Opinion
21

Understood. I may have come across too cynical; so often these kinds of questions get asked by people who are looking for excuses because they haven’t done any work at all and don’t want to. It sounds like you’ve done a lot of things right and know what you need to be doing now.

One thing: Make sure you have one lead doctor who knows everything you’re taking and ingesting (prescription or not), and every discomfort and disorder that’s happening to you. What with everything that’s going on with you, someone with medical knowledge needs to be watching your interactions and side effects.

22

Moved to IMHO, home of medical threads (from MPSIMS).

23

Ok here’s the thing. Just TRY this for thirty days. It won’t hurt you and it may solve at least some of your problems.

Go gluten free. Why bother being tested? If it is a gluten intolerance and you go gluten free, things improve then you have helped yourself without having to endure 12 weeks of agony

I just went gluten free and have been for three weeks now. (Please read the book “Wheat Belly” and it explains so much). I had several symptoms of gluten intolerance including anxiety and depression, severe joint pain and many more symptoms. What got me doing research was that I had bloody feces and bowel movements. Sure that I had cancer but unable to afford a doctor, I began doing research to see if it may just be dietary.

It took me six months to discover gluten intolerance and found out that it can start at any age.

In the time that I have been gluten free, mind you, only three weeks, I no longer have the bloody bowel movements, I have lost in excess of ten pounds, complete lack of what was becoming debilitating joint pain (I had very much difficulty moving after sitting for ten minutes or more and painful finger joints in playing guitar), I am jovial and happy now! I have been suffering from depression and anxiety for the past several years and now I have an interest and energy towards life. I actually feel like I am twenty years old again…

I have had such a great experience with eliminating gluten that I will never go back. And, there are so many gluten free products available now that I have not found it that difficult to avoid.

My experience has been such an amazing transformation that I just want to try to help everyone that I can that sounds like they may also be experiencing gluten intolerance. Everyone around me has made mention of how great I look and that I have a happy glow, even people who are unaware of my gluten free change.

Just try it for thirty days. That is all that I was doing it for originally but I love my new feelings of energy and excitement and enthusiasm so much that no bread or cake or pie is worth it. Besides there are plenty of gluten free flours so baking is still a possibility. Plus my husband is happy with my returned sexual energy. Just wanted to mention that too in case that is one of your symptoms.

Really, the Wheat Belly book explains everything in great detail with recipes to help out.

Whatever it turns out to be, bless you and I pray you find relief as I did. Especially from such a simple change in dietary habits.

24

That was a lot of soda and caffiene to expect your body to process.

Yes the acid and caffiene will cause problems with your intestines, and with muscles elsewhere around your body too.

Depression … well your body may respond to chronic illness by saying “sleep and rest it off !”. Maybe now SSRI’s can help you brighten up now you are off caffeine and no longer hurting your body.
And Excercise (at least walk) for an hour each day…

25

This is actually a really, really good question, and one that I’ve wrestled with for 6 years now. We took our daughter off gluten on mother’s instinct after a “tummy bug” (MD diagnosis) that lasted 3 months suddenly got dramatically worse after she was started on an (MD ordered) modified BRAT diet of white toast, plain unbuttered noodles and saltine crackers. I took her off all gluten, and within 12 hours she stopped vomiting, and over the next 2 months grew 2 inches and put on 2 pounds.

Seems like a slam dunk, right? Except that we still don’t really know, and when you’re a kid, especially, not really knowing eats at you. It eats at her, because she’d very much like to have everyone not make a big deal over her food at parties, and because she’d very much like to try seasoned fries someday. It eats at me because I see her struggle with a special diet and what that means for her social development. But it mostly eats at me because I don’t know if she’s at increased risk of the things that people with Celiac disease are at risk for, like Type I diabetes, Hashimoto’s thyroiditis, Lupus erythematosus, Rheumatoid arthritis, Sjögren’s syndrome, Scleroderma, Lymphoma, Intestinal cancer and Osteoporosis. These are things that are not routinely tested for unless the doctor knows the patient is at increased risk for them - say, they have a *diagnosis *of Celiac disease. Mom saying, “Yeah, she was really sick, we added more gluten, she got sicker and so we took her off gluten and she got better,” is not enough for a diagnosis to be put in her file. For that, we need testing.

Being your own doctor is a challenging proposal. Yes, I think people are in charge of their own health and bodies and need to learn all they can to empower themselves. Yes, I think physicians and nurses and pharmacists are consultants who should work in service to the patient. But sometimes what seems like empowering yourself ends up actually sabotaging yourself if you don’t understand the entire picture (as I did not understand it when I took my daughter off gluten without being tested.)

A month ago, she announced that she was done with the uncertainty and wanted to go back on gluten and get properly tested. I don’t blame her a bit, and at going-on-9, I think that’s her choice to make. So she’s been back on gluten since Halloween and…nothing. Not a belly ache, not a cough, not a problem at all. What’s going on inside? Not sure. We’ll find out in the spring.

26

WhyNot, that’s a very nice summary of the dilemma, and a great exposition as to why it’s usually better to know for sure.

All the best to your daughter.

27

True it is that it WOULD be nice to know for sure but for those who are financially shut out of the American healthcare system, we have to do what we can to get by. And, unless things change at some point, Internet research and scrounged animal drugs and antibiotics are the only course of action for the middle working classes but that is another discussion.

Oh and edited to add that I DO HAVE a joke of an insurance policy that covers my husband and I for seven hundred dollars PER MONTH with the first ten THOUSAND in deductible coming out of my pocket first. ANNUALLY. By the time that I pay the monthly premium it doesn’t leave much money for just routine doctor’s visits to, oh, see why I might be bleeding out my ASS. Although it probably wouldn’t be far off to surmise that it is from the ass-raping insurance and medical communities. No offense, Qadgop.

28

I really do understand, and feel for you. For what it’s worth, I’m a strong and vocal (as in, write letters and make phone calls to my legislators and professional nursing organizations) supporter for a single payer universal health care system like every other civilized country has, so no one has the choice of doctor or DIY forced on them.

But part of doing your internet research and making these decisions without a doctor’s input (which I do support) is finding out the whole picture, and that includes the things I posted. Back when I was doing my first internet research, there wasn’t much out there pointing out *why *testing would be a good idea before going off gluten, and a whole lot of “the tests suck, so don’t bother; you’ll probably end up with a negative test that’s wrong and have to go off gluten anyway,” which is what I took into account when making my decision. None of the articles I found pointed out WHY, long-term, a certain diagnosis was a good idea. None of them went into much, if any, detail about the increased risk of other very serious diseases that are seen more often in Celiac disease than without. Many of those articles still exist on webpages, and have not been updated as testing has changed to become more accurate, with fewer false negatives, and more is becoming known about the risk factors for other related diseases.

I’m trying to add the why to the conversation, since you asked. I don’t particularly care if you make the *informed *choice to not get tested; I just don’t want anyone else to have to make an uninformed choice like I did.

29

Thank you again for your input, WhyNot. I hope that I didn’t come off as being angry with you. I am, however, extremely angry at the state of health care in this very wealthy country. I applaud and appreciate your efforts to change the system. But I don’t have much faith that it will change for the rank and file as long as the wealthy and powerful get theirs.

Nobody should have to make the choice between health care and keeping a roof over one’s head and food to eat.

A minor anecdote: It was amazing for me to watch my mother, who had a stroke and recently died, spend a grand total of 30 days in the hospital with no surgeries, just tests and observation, whose medical bills totaled over three hundred thousand dollars. All but $30,000 was billed and paid for by medicare, the rest came out of their savings and fixed ss income. It is criminal how much the hospitals and doctors charge for testing, interpretation, lab charges and many other little miscellaneous but costly items that they pad the billing with like the $50.00 box of Kleenex brand tissues. Just so a doctor can have his 3rd vacation home and whatever class of Mercedes is de riguer for his position in society.

It makes me ill, this greed, and so many people are going to die to support it. Perhaps I do have cancer or some other deadly malady. But, I, as well as others, may never know. Until the Medical Examiner figures it out postmortem.

30

Qadgop is a prison doctor, so he’s not really contributing to insurance company greed or anything like that. :slight_smile:

31

I know, Ferret, but I have been doing a pretty fair job of painting his esteemed profession with a pretty negative broad brush!

32

I miss out on so much! :frowning:

33

Yeah, I bet you only have TWO vacation homes. Slacker. :wink:

34

About 15 years ago, one of the doctors I worked for had a mid-80s Honda Civic as his pride and joy, not to mention his family’s only car. It was stolen off the street by joyriders and totaled. He used his insurance company payout to… buy another Civic of the exact same year, from the proverbial little old lady who only drove it on Sundays. :smiley:

He’s also someone with celiac disease, and he’s the one who recommended not going off gluten before getting tested. He did go off so he found that out the hard way, but his daughter was properly tested and diagnosed with it.

35

I used to drink similar quantities of Coke. Dropped it cold a few years ago, along with a good twenty pounds, and that was without otherwise significantly altering my diet or exercise. Also, I found out that when I’m not constantly wired on caffeine, I actually kind of like mornings.

36

Gosh, I hope that I will be in the obviously fortunate condition that you all seem to be to be able to make merry and mirth at the economic injustice that is going to cause people to die for lack of medical care.

I guess the poor and working classes can just go suck it, huh?

37

That’s what the affordable care act is out there for. Go get some. I’ve supported such reform for decades, and backed that support with cash donations.

I’ve busted my ass for decades taking straight salary jobs so I don’t have to bow down to production demands by corporate medical bosses, and instead just focus on providing care. I’ve stayed in primary care because I felt I could actually do society some good. I went to work in a prison system because it afforded me the opportunity to take care of real disease, rather than hold the hands of the worried well too often. And I’ve volunteered my services at Healthcare for the Homeless and similar.

My med school peers are millionaires, having gone into very remunerative specialties. I could have done that, but chose not to. I do not regret it for a minute.

And now with ACA becoming a reality, more than just a semblance of adequate healthcare is becoming available to our society as a whole.

38

Similarly, I work in a non-profit medical center, and my specific job is helping to ensure that research is carried out in an ethical and proper manner; I work every day to make sure that patients are informed and their rights are upheld.

I also advocated for the Affordable Care Act, and recognize that the current version is a compromise closer to the “Romneycare” of Massachusetts, and was heavily altered by lobbying from insurance companies and changed by Republicans and right-leaning Democrats.

However, we are now eliminating the evils of “pre-existing conditions”, where things happened like a woman was dropped by her insurance company 3 days prior to a mastectomy, due to having seen a doctor for acne, but the insurance company decided to interpret the doctor’s note as meaning a precancerous - pre-existing - finding.

I also have a friend who has a child with a birth defect that caused serious problems with his hearing and required reconstructive surgery and a cochlear implant, which would surely have fucked over future health insurance coverage if not for the ACA changes, and her (adopted) daughter ended up having a host of psychological issues due to the abuse she received as an infant. My friend would probably find her insurance care dropped or capped due to these little kids’ issues, but fortunately insurance companies can’t mess with people as much in that respect now.

39

Who the fuck are you even talking to?

40

[quote=“Qadgop_the_Mercotan, post:37, topic:674984”]

That’s what the affordable care act is out there for. Go get some.

I did go on the so-called “affordable care act” website the very first day (was waiting anxiously for it, in fact) and guess what I found?

My monthly premium increases by $76.00 per month and instead of a $10,000.00 deductible it would be $12,000.00. Still can’t afford to go to the doctor.

Sure made it so much more affordable for us! I really, really had hoped that the Affordable Care act would do just that. We have had our own business and supplied hundreds of jobs for years. Paid more than our fair share of taxes. Always, always carried health insurance while we watched others go without and used the money to take luxury vacations. Then they would tell us how “great the South of France is and that we should go sometime!!!”

And, every year, despite being healthy, non-smoking hard working Americans who never make a health claim and wouldn’t consider abusing the health system the way some do, our premiums climb and climb. And now, the much touted “affordable” care act is actually just a sham and certainly no apparent help to the middle classes who are being crushed more every year by the insurance companies.