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Rheumatologist
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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...

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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.

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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. :ph34r: 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, :rolleyes: 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 :blink::lol: ) 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. :angry:

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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....

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    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
    • I think that we have to remember that celiacs often develop intolerances due to our  damaged guts.  Our guts do not ncessarily heal either (usually adults) for  a variety of reasons even if their symptoms improve (see links below).   Nuts are just plain hard to digest.   I can not tolerate almonds, but can handle walnuts and cashews in small amounts.  I can eat peanuts too, but resort to Peanutbutter after a Glutening as it is easier to digest (maybe I have to learn to chew better!  😀)  My nut symptoms have  nothing to do with gluten as I have purchased certified gluten-free nuts and suffered with the same symptoms.  .   https://www.verywell.com/celiac-disease-when-will-your-small-intestine-recover-562341 http://www.cureceliacdisease.org/treatment/ http://www.ncbi.nlm.nih.gov/pubmed/23936873 i call the manufacturer when I suspect the manufacturer is sharing the line or if I just want to know.  I bought some Black English walnuts and called the company.  Those are the only nuts they process and they do not have any flavored nuts.   if you really want to test your theory out, buy some nuts from Nuts.com (certified gluten-free).   See if you get a reaction or ask your GI to retest your antibodies (which should be done annually anyway).   I just hate to have Planters get a bum rap when you do not really know for sure.......😥    
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