Thank you, @Altras . A hematologist it is, then.
I just know that my own health took a nosedive about nine years ago, and a very large part of that involved terrible pain and some swelling in my joints–particularly my hands and arms. I wasn’t expecting that to change when I decided on a whim to see what being gluten-free was like, but within a few weeks it made an astonishing difference.
So I’m not thinking so much that the iron deficiency is causing his injuries (although with no medical expertise whatsoever I was thinking that injuries might need a good supply of iron/oxygen in order to heal), but the possibility that the deficiency is caused by Celiac or some kind of gluten sensitivity, which in turn might be contributing to the the pain and inability, is what I’m theorizing. And if those conditions are hereditary sometimes, he might well have gotten them from me. As I mentioned earlier, I’d been trying to get him tested for Celiac for quite some time before all this happened.
I’m less worried about the vitamin D; I’m just thinking that that deficiency might be related to malabsorption as well.
Vitamin D is not that common in food (some fish, egg yolks, fortified foods have some). Showing your skin to sunlight is probably the main generator of Vitamin D that you can get (obviously, don’t get sunburned – but the amount of sun exposure for optimal vitamin D generation is well below the exposure needed to get sunburned). Dark skinned people in high latitude areas may have more difficulty with getting vitamin D from sun exposure, as can people who rarely go outside or those who follow dermatologists’ advice to dress like conservative women in Saudi Arabia or Afghanistan.
@ucbalumnus --well, he’s not exactly a sun-worshipper (although we did live in FL for seven long years!), and he tends to keep the blinds closed in his room, but I think he gets outdoors fairly regularly, if only to get to and from class (and he dresses nothing like a conservative Muslim woman!). I’d think less of it if he didn’t have the iron deficiency (for which I can think of none of the usual dietary reasons) at the same time. It just makes me wonder more about Celiac, which, as I understand it, could deplete both.
But I guess sometimes a vitamin D deficiency is just a vitamin D deficiency, to paraphrase Freud. 
Agree with this and the rest of @Altras 's comments.
I wrote a long post but am deleting because my kids value their privacy.
So I will say that the PRP provider we know is a careful researcher who works in the MGH system, a top hospital in the world, and teaches at Harvard, She has been collecting data for years, and I have read much of it. I will also say that the results we have seen personally, twice, have been nothing short of miraculous. Because this doc is doing studies, clients are carefully screened with thorough diagnostic testing, of value in themselves, and PRP is only offered when there is a good chance of effectiveness. The procedure takes about 30 minutes and can stop years and years of pain. It can be more effective than surgery, in our experience.
Addressing celiac may address hand pain but I have not seen it. Everyone’s experience is different and I am glad AsMother had that effect. Celiac is an autoimmune disorder that brings with it other autoimmune possibilities.
Get the blood work for celiac at least, before he goes gluten-free. If he later needs a biopsy he can go back on, but the blood work can be done quickly and then he can try out a gluten-free diet. It just doesn’t make sense to do the gluten-free trial without the quick blood work, since he may have to go back on gluten for months to get the blood tests later. Or he may decide to stay gluten free and never know for sure, which causes compliance problems.
Half the planet is low on D. A dose of 3,000-5,000 units can get a person back up to normal in a reasonable amount of time. Some docs will do 50,000 units but for some that is toxic. That is most likely not an absorption problem. And in Boston, the sun doesn’t provide D for much of the year. Add sunscreen and you get a recipe for deficiency.
Hematologist might be best for the low iron. Clearly there might be a GI absorption problem (which may be caused by celiac) but there are other possibilities. IF ANA or RF tests are positive, then rheumatology.
I would seriously think about a tick bite being behind all of this. The hand issue could be from Lyme. The iron issue can be from Babesia. Both from ticks. The trick is getting tested properly. Most docs do an Elisa to screen but Elisa has false negatives and is also affected by autoimmunity. Insist on getting a Western Blot. Even if the results don’t match CDC criteria, consider the possibility that it is positive if even one Lyme-specific band is present.
There is a functional medicine doc n Waltham who is good with the big picture. I can give you his name. He is a good supplement to the various specialists.
The iron is quite low and may be a clue to everything, including the pain issue, or he could be dealing with separate problems.
One other comment: your body does “adjust” to low iron levels. That’s not a good thing. But it does explain sometimes why people walk around for years without knowing their anemic (despite unexplained nagging issues). So it can impact “mood”. If you are tired all the time…you may be a little crabby and not have the most positive outlook. I suspect I had anemia for about 1.5 years with only the last 4 months getting to a point where it REALLY became evident something was wrong. I was told it was a bit like being a frog in boiling water. The water is fine when you’re put in the pot. As the water starts to simmer and boil you don’t hop out bc you just keep adjusting…until you can’t anymore. I would also seek professional expertise on diet…low iron can cause pica (which I did developed at the very end)…so good science-based evidence on diets are helpful to people with anemia. It helped me deal with my pica…and resist some of the compulsions related to low iron and just eat animal protein. Note I was NOT eating dirt or bark…lol…it was carrots! Ice chewing is common with anemia/pica too. You just gotta gnaw on something!!
lol, Mine was plain rice cakes. Had to carry a pack along everywhere, and on vacation would search for stores that sold them. I had no idea I was anemic, but when I got the diagnoses and was treated, I never wanted a rice cake again…
Yikes on the pica! So far, my son doesn’t seem to have any desire to gnaw on anything odd (although some carrots couldn’t hurt!)…My dog, on the other hand…
I really appreciate everyone’s input, although I feel as if my head might explode from all the different possibilities. I waited all day for a call back from my son’s doctor, which never came.
But he just got back to his dorm at Berklee, where I know he’ll feel much better about stuff–he really likes that place so much…all the more reason to figure this thing out.
I’m thinking about everyone’s suggestions, and still reading articles online. At this point I’ve become convinced that, as alarming as the ferritin level is, if either deficiency has anything to do with the chronic pain it’s the D.
As one very wise and helpful CC-er put it earlier, it feels like I’m “standing in a field of tall weeds,” trying to sort it all out.
Again, I’m so grateful to all of you. I don’t know what I’d do without this “place”!
I’m sorry, but can I bother y’all with just one more question? I don’t know why this didn’t occur to me earlier, but the pain in my son’s hands, wrists, and forearms is the same on both sides. Does this make any sense if he has tendonitis? Obviously, the right and left hands move in very different ways when one plays guitar, so wouldn’t the pain be different? Any guitar players or their parents out there? (We’re still waiting on a call back from the doctor, btw, and it’s starting to…how do I say it?.. piss me off.)
All I want to do is help him get to a place where he doesn’t have to fear that he’ll have to leave Berklee, where he’s otherwise found his Nirvana.
Be careful with Iron supplementation as iron is quite toxic if overloaded in the body and could cause body pain, fatigue, lethargy, very similar symptoms of iron deficiency, and liver damage if long term.
Gluten-sensitivity sometimes does not show up in bloodwork and the best way to tell is to go on GF diet and see whether conditions improved/symptoms reduced. Luckily, these days, even pizza places have gf options.
Hope for speedy recovery to your DS!
Thanks, @makemesmart . The iron (and D) supplementation was prescribed by our doctor, so we’re not just winging it on that!
And I’ve been GF for about 8 years, so I’ve got practice with that and can help him if it comes to that. (There is now some GF pizza at some restaurants that’s actually really tasty!)
He’s trying to go GF just for a week or so to see if it makes any difference at all (it helped me pretty quickly, as I recall. Then he can go back to a normal diet and take the test, if it’s deemed appropriate. I think he just wants to try SOMETHING now that he’s back at school, hoping that we’ll get this figured out asap. Otherwise, he will just sit around feeling powerless, as he’s tried very hard to do the usual treatments for overuse injuries properly, and it hasn’t made a damn bit of difference. I’m trying to keep his spirits up (which the iron deficiency doesn’t help!).
OP, http://www.irondisorders.org/iron-overload
We are GF family for over a decade and it is not that difficult to do once you get the hang of it. It might not be as easy for college kids. I would give gf diet at least two-week to let the body rid of the residue gluten then see whether symptoms reduced.
I second @compmom ‘s suggestion on tick-borne diseases. Lyme and co can cause everything you have mentioned, from what i have heard. Since @compmom is in your son’s geographical area, i would use her as a reference. You’ve got this, mama!
Dear God I hope so, @Music2023 ! I just sent him a text telling him that I want him to see a rheumatologist (who, I’m sure, can address the possibility of Lyme, among other things). I don’t know why it didn’t occur to me earlier that bilateral pain doesn’t seem to make any sense for an injury that’s guitar-related (I can be a little slow ).
Bilateral pain does not make sense at all. It could come from the neuro system (spinal cord, brain). You might want to consult a neurologist, but the rheumatologist can tell you that. I gave you the name of a good one in Boston.
Are his hands weak? Are there sensations like tingling or numbness? What kind of pain? Does it resemble the way hands feel coming in from the cold? Does it feel like tendons?
It is true that blood tests for celiac may have false negatives. A biopsy is the gold standard. If he goes gluten free, it has to be a celiac diet, which is different in degree. For instance, gluten-free pizza is not enough. The dough cannot touch any surface where regular t dough has been, and it has to be cooked in a separate oven. Your son is better off since you are GF but make sure pots and pans haven’t cooked regular pasta. Separate toaster. Etc. Celiac responds to microscopic cross-contamination.
Pleeeeaaaaase find a doctor who is an expert on Lyme. Lymenet online has a find a doctor section.There are some extremists on that site but good info on doctors. Read about the “Lyme wars” and controversies. I can tell you from personal experience that testing may not be accurate. Get a Western Blot, not an Elisa, maybe use Igenex labs because they report more bands. Understand that the CDC definition of a positive test is different from some Lyme docs. Even one band that is specifically an antibody to Lyme can be seen as positive, according to some.
I gave you the name of a functional medicine doctor in Waltham. He could cover ALL of these things. He is a detective. He costs $300 and your son might not get an appointment for a couple of months, but just in case, maybe you could consider calling.
This picture requires coordination. You don’t want to end up seeing a bunch of specialists who see each component separately.
Our family deals with celiac and many other issues but never had iron that low. Does your son have GI symptoms? The low iron is significant as a clue. Look up Babesia if he is not having GI symptoms- a possible cause.
Sympathies! In the long run it is unlikely your son will have to leave Berklee. But remember that a medical leave is not the end of the world. And composers can progress in all kinds of situations. I know he loves to play and that playing gives him community. You WILL find an answer or answers.
I was also thinking you could start with a physiatrist. Borg-Stein is a physiatrist and diagnostician, part of the Spaulding/Harvard?MGH/Partners system, and can refer to appropriate specialists. Spaulding in Medford or Charlestown might be a resource as well.
A couple points.
A guitarist with overuse injuries is not common. An ache here and there, or a hot-spot that is troublesome - sure, that happens. A symmetric polyarthropathy - no, that does not happen. He is likely having symptoms of an infammatory arthropathy and/or systemic inflammatory condition.
The one important objective data point you have now that must be addressed and answered is low iron in a male. Start there and start with the relevant specialist (hematologist). That course may ultimately lead to a rheumatologist, but for now, I’d advise keeping as many cooks out of the kitchen as possible.
Lyme disease, Celiac disease, Babesia, etc are all very uncommon conditions. Uncommon presentations of common conditions are far more likely. When you hear hoof beats, think horses, not zebras. Don’t go chasing zebras at this point and getting even more concerned.
@Altras , at this point I have a whole menagerie in my head! Last night I was convinced it was RA, although if I understand correctly that would present with HIGH ferritin levels.
But what I’m going to do now is take a deep breath, step back, and start with the simplest options to re-start the process of diagnosis and healing. With the two new pieces of information (low iron and D, and the symmetry of his pain), I think we’re in a much better position to get to the right place. We will get a referral from either his doctor here or the health center at Berklee and go where they recommend once they know the details–hematologist, rheumatologist, or both. The Whack-a-Mole approach that we’ve been taking will get us nowhere, and will only cause my son (and me) more frustration. But I am encouraged–it just seems that if it’s a known inflammatory/auto-immune issue, caught in its early stage, we will have a clear course. Praying each week that the OT might make a difference, and knowing that any improvement might be temporary anyway, has been awful.
If he can get through the semester while working toward diagnosis and treatment without Berklee booting him, then he’ll have all summer to really make progress and do whatever is necessary. If he had to sit out the semester at home, I believe it would kill him, much as I love having him around. He needs his friends.
Now that classes have started, I’m pretty sure he’ll feel happier. Today he has his first classes in film-scoring and counterpoint (loves it), so it should be a good day for him.
Thanks again, everyone.
Lyjme disease is quite common.
You are smart to pick one doc and hope things can be coordinated.
A leave can be productive. My kid interned during both of her medical leaves and gained some job skills that also helped engagement at school. Hopefully not needed but as time goes on, the leave is just a blip in memory.
It certainly makes sense to think of Lyme, as we spent a lot of time in the Hamptons when he was younger. But I just briefly glanced over some articles online, and I get the impression that it would be rare for the pain to be symmetrical. I can’t say that for certain, though, as I only play a doctor on CC .
We texted a little today, and he sounded very happy to be back (film-scoring, he said, was a “cool class”). Like I said–for him, Berklee=Nirvana.
We also had a little back-and-forth about the nature of his injury. He said he believed it only involves his tendons, not his joints ( he said, “The tendons get big and vascular when irritated,” but “the joints themselves experience no pain or stiffness.” I’m not sure how he would differentiate, but whatever. He also thinks that the symmetry is simply because he overworked both hands (he definitely has his mom’s stubborn streak!), but I pointed out that they were worked in totally different ways.
Bottom line is that he promised to go to the health center by the end of the week, show them his labs, and ask for an appropriate referral. Because I no longer trust a lot of medical providers to pay attention to the details or ask the right questions, I instructed him to be sure to point out the ferritin level, and to tell them (in spite of his opinion) that the pain is the same on both sides.
Now I will just try to chill and trust the cosmos, if not some of the medical community! I do, however, give credit to our GP here for ordering the ferritin test, as apparently it’s often left out, leading to possible skewed interpretations.