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QOTD (and PSA): Adult-diagnosed celiac disease and osteomalacia

January 29, 2012

From a text I ran across, Metabolic bone disease and clinically related disorders (edited by Louis V. Avioli, Stephen M. Krane), discussing health problems which cause malabsorption:

The potential risk of osteomalacia is greatest in adult celiac disease because the mucosal defect impairs absorption of vitamin D and calcium directly and may also reduce local calcitriol synthesis. Patients with mild subclinical celiac disease may manifest all the symptoms of HVOi[*], which improve with a gluten-free diet. In patients untreated for many years, osteomalacia develops in more than half, but can be forestalled by timely diagnosis. Osteomalacia can occur even without steatorrhea and may be the presenting manifestation…[T]here is no response to ultraviolet irradiation or to moderate doses of vitamin D in the absence of a gluten-free diet.

Emphasis added, and citations omitted (you can click through to the book preview if you want to see that). As the local calcitriol synthesis and lack of response to UV exposure would suggest, just what I have been able to skim so far has been very interesting in terms of complexity; I’d suspected as much, but the usual models presented are way oversimplified.

One interesting bit that seems very relevant: what sounds like another vicious cycle, in which calcium can’t be used properly without enough vitamin D (the bit that gets the most attention)–but, also, depleted calcium levels will keep your body from using the D properly. The roles of a lot of other minerals involved in bone modeling, and how they interact, are poorly understood.

There is also discussion of how multiple factors tend to be involved, if things get to the point of serious bone demineralization and/or hypocalcemia symptoms. Including that people with disabilities that keep them from getting out much tend not to get much UV exposure; I’d add that this can also snowball, as you feel worse and worse from deficiency problems.

An excellent point from Osteoporosis and Osteomalacia in Patients with Celiac Disease:

Although it may be asymptomatic, Celiac Disease is a lifelong disease. If there is lifelong impairment in calcium absorption, bone density will be compromised.

This is too often overlooked by clinicians, when dealing with people diagnosed as adults, often because the symptoms have changed. While I did have digestive problems my whole life that got put off on all kinds of things–because celiac was still considered so rare–it suddenly got a lot worse as an adult, after I moved somewhere that wheat is cheap and gets used in absolutely everything like corn is in the US. Some people don’t even have the obvious if lower-level digestive symptoms. And, as mentioned in the main quote, just because you haven’t been spending half your time with the runs like you’ve been eating Olestra over the longer term, that doesn’t mean you’ve been absorbing nutrients properly.

I honestly think there is too often also the perception, including among medical professionals, that if an adult had really been suffering from celiac disease (and I use “suffering” advisedly here) for a lifetime, they’d be dead or at least severely impaired in readily visible ways. Leading to the idea that even though celiac is, by definition, a lifelong condition, the onset must have been recent–or it must have been a mild enough case not to have done any real damage. Bzzt, it doesn’t work that way.

It doesn’t help that both celiac and vitamin D deficiency are still considered rarer than they are, to the point of their just not thinking to look for it. Osteomalacia among people who are not elderly, even more so.

Another often overlooked point, from Osteomalacia in Adult Celiac Disease:

Mineralization defect and osteomalacic changes are common later on, irrespective of whether patients are in remission or not. Changes may not respond to a gluten-free diet alone but may require supplementation.

That one also includes pretty good descriptions** of some of the signs to watch out for. (Even if it gives bad off-the-cuff advice about how much sun exposure is needed.)

Emphasis in the original, this time. That is what seems to have happened to me, not helped at all by lack of UV exposure at the latitude where I am living. (On a GF diet for better than five years now, and I seem to be able to synthesize and use D from sunlight when it’s available.) But, there is a pretty common idea that a GF diet will fix everything, and quickly. When you’re almost certainly dealing with multiple longterm deficiencies, that ain’t necessarily so–which should be obvious. One good analogy I saw, though I can’t remember where, in the context of just a vitamin D deficiency and low-level supplementation: it’s like trying to treat dehydration with a shot glass full of water. All the while, you’re getting more and more dehydrated.

And that’s even without some professionals not even sending people for nutrient testing and bone scans–and brushing off classic vitamin/mineral deficiency and osteomalacia symptoms. Because a GF diet fixes everything instantly, right? (Yeah, it’s hard not to sound bitter sometimes. But, there’s just no excuse.)

Another factor that may be relevant, and I suspect is one reason why I’ve been needing to take so much vitamin D and Osteocare (with other minerals besides calcium, which has made a difference): the relationship between vitamin D and some continuing IBS symptoms.

The relationship with vitamin D and IBS is cyclic. Autoimmune disorders are associated with vitamin D deficiency, but then can also cause vitamin D deficiency. The malabsorption caused by IBS results in deficiency of vitamins absorbed in the intestines, which includes vitamin D.

Sounds like a ball that (autoimmune) celiac could easily get rolling, yeah. More vicious cycles.

But, I was shocked enough by the “more than half” prevalence that I had to post the original quote; then it mushroomed. 🙂


* Explanation from Lessons for nutritional science from vitamin D:

Parfitt (3), building on the expansion of knowledge in bone biology in the past 40 y, has characterized the disorder due to insufficient vitamin D as “hypovitaminosis D osteopathy” (HVO) (3). He divides HVO into 3 stages along a scale of increasing severity. In HVOi there is malabsorption of calcium accompanied by physiologic evidence of an attempt to compensate (eg, elevated parathyroid hormone production and high bone remodeling); the result is bone loss, ie, osteoporosis. In HVOii, bone mass is also low, calcium malabsorption continues, and bone remodeling is either high or drops back into the normal range; now, histologic examination of bone reveals subclinical, early osteomalacia. In HVOiii, clinical rickets or osteomalacia is present and bone remodeling is reduced or absent entirely (partly because of the dependence of bone resorption on 1,25-dihydroxyvitamin D [1,25(OH)2D] and partly because bony surfaces covered with unmineralized osteoid serve as barriers to osteoclastic erosion). The prevalence of each degree of HVO is unknown but environmental vitamin D availability seems sufficient to prevent HOViii in most North Americans. Therefore, most vitamin D deficiency does not manifest itself as clinical rickets or osteomalacia.

** I would add: the pain can also be in long bones in your arms– and especially the ribcage and sternum, too. They underemphasize the kind of pain levels it can cause. And it does more than ache once the insufficiency/stress fractures start, so if this might be a problem for you, I hope you can get it managed before it reaches that point!

2 Comments leave one →
  1. January 31, 2012 12:24 am

    This is interesting. My mom is on a GF diet, and her grandmother has (had?) Osteoperosis, and my mom has been looking at gluten sensitivity in our extended family.

    • urocyon permalink*
      January 31, 2012 5:06 pm

      Yeah, I suspect it’s actually a problem on both sides of my family. And–along with not getting enough sun exposure for people with their skin types, even in VA–a factor in the chronic pain which is all too common among my mom’s family. (My mom and a couple of her cousins that I know of have/had the exact same distinctive pattern of pain, to the point of “I’m so sorry you got the family curse so young!” type comments.) I suggested that my mom might want to try cutting out the gluten after I got kinda-sorta-diagnosed, but she was basically feeling too overwhelmed and sick to try making that much of a change. I have been trying to figure out how to bring it up with some of the others I’ve mostly lost contact with, without sounding interfering in a bad way.

      I haven’t yet gotten around to putting together the more focused post with research links on vitamin D and chronic musculoskeletal pain, but there is a decent bit suggesting that a deficiency will make actual fibromyalgia and other chronic pain conditions worse–if there is an underlying problem that is not totally coming from the deficiency. And people with lowish but not outright deficient levels have improved pain management with supplementation (I don’t have the spoons to track down links right now). But, this is indeed complicated by possible continuing malabsorption. 😦 Celiac and other gluten sensitivity sometimes does show up through musculoskeletal pain, because there are so many ways malabsorption can cause that.

      You mention one point I didn’t remember to raise here: it’s not just the celiac manifestation, but gluten sensitivity in general, that will do this stuff–and almost all the focus is on celiac, per se. Which, even though it’s what’s on my chart, I don’t even know that I have since Lazy Pennywise GP didn’t send me for any testing whatsoever; when I mentioned that stopping the gluten had also stopped the digestive problems, he just wrote down celiac and told me to keep eating GF! Since getting antibody testing and a biopsy to see if there’s celiac damage to the villi (no f-ing way!) would require going back on gluten, I’ll continue to pass. There are some links about gluten sensitivity in general on the sidebar of my neglected food blog: (Where I was just reminded that I meant to crosspost this!)

      And a little more about diagnostic problems and the focus on celiac as the only/only serious way that gluten sensitivity can show up, over there.

      BTW, I’m sorry I did not get back to your earlier comment on the “Help! Broke pelvis!” rant. I hesitate to make suggestions, not knowing exactly how dire your financial straits are (but having a pretty good guess). But, non-prescription supplements tend to be much less expensive than prescription ones–and usually more bioavailable D3 rather than the D2 they keep prescribing both here and in the US, for some reason. Supplements tend to be a lot more expensive in the UK, with most of them that I have to use beyond basic multivitamins imported from the US–and I just bought a 360-capsule bottle of 5000iu D for £11.95 plus a bit of shipping. If I weren’t taking two of them temporarily, that would be almost a year’s worth. Testing blood levels, to be safe, is more expensive (I wrote some about testing before), but cheaper than getting it done through a doctor’s visit if paying out of pocket. I don’t know what might be doable for you, but there are thankfully some other options if going through the doctor is inaccessible for whatever reason.

      Which also reminds me, I really need to get the latest test kit done and mailed off… 😦

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