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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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