Rheumatologist

[june27]

i started seeing a naturopathic doctor earlier this year for chronic allergies and dry/inflamed eyes (that i presumed was due to some systemic issue). after doing a food sensitivity test which i scored off the charts for gluten/wheat/oats, she asked my primary care doctor to run a celiac panel for me. (massachusetts does not recognize naturopathic doctors as doctors, so insurance won't cover it if she prescribes it for me). primary care called to tell me that bloodwork was positive, and basically said she would let me work with the naturopath for this.

i had another appointment with my opthamologist today and asked about some dry eye issues and erosions/ulcers that (when prodded) he suggested could be AI in nature. he recommended that i see my rheumatologist for further testing. unfortunately, i don't have one...

my question is about rheumatologists...

is it worth getting a referral from my primary care (i am in an HMO), or should i just stick with my naturopath?

[if a rheumatologist is likely to be more in tune with autoimmune issues then i could see how it might be good. my concerns are that i keep hearing about how not helpful many doctors are, and i am also concerned that they might just try pumping meds that might not be necessary - so maybe i am just as well off sticking with my naturopath]

just looking to hear people's opinions...

[pricklypear1971]

i started seeing a naturopathic doctor earlier this year for chronic allergies and dry/inflamed eyes (that i presumed was due to some systemic issue). after doing a food sensitivity test which i scored off the charts for gluten/wheat/oats, she asked my primary care doctor to run a celiac panel for me. (massachusetts does not recognize naturopathic doctors as doctors, so insurance won't cover it if she prescribes it for me). primary care called to tell me that bloodwork was positive, and basically said she would let me work with the naturopath for this.

i had another appointment with my opthamologist today and asked about some dry eye issues and erosions/ulcers that (when prodded) he suggested could be AI in nature. he recommended that i see my rheumatologist for further testing. unfortunately, i don't have one...

my question is about rheumatologists...

is it worth getting a referral from my primary care (i am in an HMO), or should i just stick with my naturopath?

[if a rheumatologist is likely to be more in tune with autoimmune issues then i could see how it might be good. my concerns are that i keep hearing about how not helpful many doctors are, and i am also concerned that they might just try pumping meds that might not be necessary - so maybe i am just as well off sticking with my naturopath]

just looking to hear people's opinions...

My advice is to try a Rheumy because you have AI issues. S/he can order tests and discuss things. You can take the same results to the nd and discuss it again.

You don't HAVE to take meds. That's your choice. Get the info you need to make the choice.

[Takala]

IF you can get your HMO to get the referral and then pay for it, you can try to consult with a rheumatologist, and I am recommending, as always, that you pursue medical diagnosis. However, mentally prepare to be disappointed, as they will not necessarily be celiac or gluten literate, at all.

Furthermore, rheumatologists are not really interested in you as a patient, unless they can prescribe the newer, (expensive) heavy- hitting drugs which alter the immune system. These drugs work for some people with the classic rheumatoid arthritis, but they also have a lot of side effects. A rheumatologist might start out by running some blood tests, but then, if you don't fit into what they are looking to drug, they will tell you you're not arthritic, or don't have auto immune issues.

I was diagnosed by a real doctor as opposed to one of these "for profit"- only types with a type of serious, relatively rare sero- negative arthritis back about 30 odd years ago, and went about a decade with the same one as we tried various things to get it under control. Unfortunately, he missed the gluten intolerance aspect. Then we moved to another state, and I got the shock of my life because I didn't realize at first that HMO's are basically rip offs, designed to cherry pick healthy people, and they really hate chronic disease patients. So the PCP I had was such a space cadet in not realizing that when I get sick with other things, I really do need to be treated, sometimes, so I tried getting a rheumatology consult, it took forever, and then of course this idiot tells me, without seeing a single xray or test, that I only have "fibro" and implies that I can't have this. They eventually run xrays and months later admit I am arthritic but their treatment is to take OTC NSAIDS. Oh, thanks, my gut & kidneys love that. Eventually I get out of the HMO without them killing me, and into not so sadistic insurance, aka PPO, and then go thru several more years of being blown off, including another rheumatologist that I wait months to see, who also tells me that I am really not that bad off and don't have my arthritis, costochondritis (rib cage stiffness), dry eyes, dry mouth, etc inspite of what my eye doctor and dentist tell me. Then I finally give up on those (I have been all along on another arthritis chat board, and am convinced that having seen what happens to other people, maybe not being drugged to death is a better idea afterall) and ended up with another PCP telling me he does think it's MS so I am referred to the neurologist from hell™ who takes a year to run tests, makes me wait 2 months between appointments to get said test results, finally bothers to scan where I tell her I have problems, and then tells me I am a IAIYH- head case - and dietary grain has nothing to do with this - BUT I have gotten the test results from her office and I do indeed not only have spinal problems showing hella - lotta bone loss, but brain lesions typical of Celiac. Not MS.

Everyone is ignoring the chronic kidney problems, other than I luck out and get a PCP who seriously whacks this with a good antibiotic, which helps. BUT, I remember what a urologist told me many years ago, that I was probably shedding calcium into my blood, and then the kidneys were filtering it out and depositing calcium where it was causing problems, then infections, so I shouldn't take TUMs, which makes this worse. This is contradicting the ob-gyn, who told me I had to take calcium, because I had bone loss, so I read a book by another ob-gyn which explained that certain types of calcium are bad, and others are good, for this situation, and I tried switching the type of calcium, to calcium citrate, and between that, and the antibiotic and the vitamin supplement, I at least cut down on the kidney problems. BUT, another symptom of celiac is poor bones... the symptoms are all starting to come together and make sense.

I self - diagnosed as gluten intolerant, and this affirmed my decision to stick with it, no matter what they thought, because I felt so much better on it, and I started researching like crazy online for medical research info on the neurological form of celiac/ gluten intolerance, and other people with arthritis who did have a good response to diet change - this was back when "leaky gut" was just a controversial theory, and now we now it's much more than "just a theory." And my kidneys really like the gluten free diet. I don't get chronic infections all the time.

After years on the gluten free diet and slowly and steadily making progress, aka "healing," and improving on the neurological symptoms also, I thought why don't I tell my PCP I haven't eaten gluten in 5 years and hell is going to freeze over before I do, so I did just that about 4 years ago, and he is fine with this, since he's seen the test results (this person seems to have holes in her brain ) and is amazed I can do anything.

Be aware that one can have Sjogrens, or Sjogrens- like symptoms, and still flunk the blood test for the antibodies for that, also. But your eyes can improve on a gluten free diet, but you still may have to be very careful with them, sunglasses outside to keep wind/dust/debris out, careful with eye makeup, use of moisturizing eye drops, etc. Doesn't take a rheumatologist to diagnose this, they may try to do the opposite.

[rosetapper23]

Just would like to add that, now that you know you have celiac, your dry eyes and arthritis might just resolve on a gluten-free diet. I'm just saying....