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Quick hit: “Chronic Fatigue Syndrome and Celiac Disease”

May 15, 2013

First, a rather important post, as shared yesterday on G+Chronic Fatigue Syndrome and Celiac Disease » 

As soon as I read this info, the first thought that went through my mind was how similar the CFS symptoms seemed to how I would feel if I had to go back to eating gluten again.  Joint pains, “brain fog,” fatigue, and enlarged lymph nodes were all chronic problems which I experienced in the months before my Celiac diagnosis…

The bottom line is that you or a loved one have been diagnosed with chronic fatigue syndrome, please make sure that Celiac Disease has been excluded.  I tried to search the medical literature for information linking CFS with non-celiac gluten sensitivity, but in usual fashion, there has been no research looking for a link between the two problems.

Similar goes if you are experiencing symptoms like these, and it’s getting treated as “all in your head”. (As mine were for better than a decade.) All the counseling and antidepressants in the world aren’t going to “fix” nutritional deficiencies, nor actual#CFS .

I got diagnosed with #fibromyalgia in college, with some added bone pain and neuromuscular problems from chronic deficiencies on top of what this blogger mentions; this is not unusual among people with undiagnosed #celiac . Neither is totally inadequate treatment once you do get diagnosed with either non-celiac thing, sad to say.

I’m actually still having some problems with this stuff, but that’s after about 30 years of malabsorption before figuring out what was going on. (A major reason I haven’t been around much lately.) Just knowing what’s happening makes things feel a lot less hopeless, besides equipping you to actually deal with the base problem.

ETA: I forgot to add that I have to suspect that something like this is going on in the majority of cases where people end up with syndromal diagnoses of exclusion. They usually test for a few things perceived to be relatively common problems, then stop there out of frustration. There’s something going on there that they could do a lot better at treating, if they actually found out what it was. Which is definitely not to say that CFS and fibromyalgia are not “serious”, in and of themselves. Rather the reverse.

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I would also like to add this, now that I have tracked down the post (source article linked there):

Besides the frustrating antivax theme hurting people, I can’t help but hope that this bit filters into the diagnostic trenches:

“Adolescent girls are the group most often affected by chronic fatigue syndrome”

It’s enough of a problem with adults, but this is maybe also the demographic most likely to have such a cluster of “vague” symptoms dismissed as a psych problem, based on bias/laziness/shedloads of assumptions which are anything but evidence-based. This can also be extremely harmful.

As I’ve written about here before, vitamin D deficiency is an appalling common and un/misdiagnosed problem, even without malabsorption complicating things. I never did get that link post done on the links between low vitamin D levels and chronic pain/fatigue, but there has been a decent bit of research there (to the point that trying to collect a good sample was kind of overwhelming). And sometimes “fibromyalgia” symptoms and back pain are the main presenting symptoms of celiac. Maybe I can put something together before too long. But, yeah, it’s only classified as a vitamin at all for historical reasons, and the vast majority of people don’t get much in their diets even if they can absorb it fine. It’s actually a hormone, which affects every system.

If a deficiency isn’t recognized and treated, that can cause you a variety of serious problems, up to and including death.

And another BBC story posted six hours ago, which I ran across looking for something on another absolutely horrible case* which did result in death:  Too much sun cream results in Leicestershire boy’s rickets:

Chris Head, from Lutterworth, always had factor 50 sunscreen on when he played outside blocking the sunlight from his skin.

His mother Suzi said she was shocked to discover her precautions had resulted in a painful condition for her son.

So much for some sources that claim rickets is not painful. (How would that even work?!) I’m sorry these things keep happening, but also glad that there’s more awareness now that guidelines on avoiding UV exposure are really horribly inappropriate in a climate where the majority of White adults (and IIRC all the non-White ones tested in that large study) are deficient.

Another study, in which “deficiency” as defined is probably “profound deficiency that will give you bone density and other severe health problems” (“< 10 microg/L”==10 ng/mL; the ranges in the above graphic are actually running on the low side by current knowledge): Vitamin D concentrations in an UK inner-city multicultural outpatient population. I just ran across that one, and couldn’t resist throwing it in. I don’t want to sound like one of the unbalanced vitamin D as panacea folks, but yeah. That really does no doubt contribute to a lot of chronic health problems and suffering, which are totally treatable if properly diagnosed.

 

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* I haven’t been able to write more about that one, but it was an absolute clusterfuck of medical malpractice and racism, resulting in the death of a baby and his (young, dark-skinned) parents getting convicted of killing him. The poor mother’s own vitamin D levels were so low, at 16, that the child was born with basically no bone minerals–and nobody believed her when she kept taking him for medical attention because something obviously wasn’t right with him failing to thrive and crying in pain all the time. (She could not have been healthy at all, herself, even before a pregnancy and nursing using so many resources.)  That article I picked barely goes into the horribleness there, but it’s easy enough to find more. Including speculations that similar keeps happening, with at least one study happening  into how many children assumed to have been beaten to death may have really died from complications of severe rickets.

OK, I am probably not going to try to write more about that in future. My eyes are starting to bug out of my head, as it is.

One Comment leave one →
  1. Freya permalink
    May 16, 2013 1:05 am

    At one of my blood testings in recent years, my GP ordered Vitamin D level testing because she’d seen sufficient cases of deficiency that she was ordering it for everyone who was coming in for blood tests, regular or otherwise. Mine was one of the few non-deficient results she’d seen that year; now we know for sure that that’s not a contributing problem. I love my GP, and I love being in the Australian system, where we don’t have to pay out of pocket for any of these blood tests, so my GP can look at everything without worrying she’s bankrupting me.

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