Category Archives: Gluten-free living

Review: Pizza Hut UK’s gluten-free version

I liked the “serve it on a cutting board” approach.

I was excited when Pizza Hut introduced a gluten-free crust in the UK, and had been meaning to risk cross-contamination and try it. Homemade crust is great when you have the time and energy, and I’m glad to have good access to decent frozen pizzas to embellish, and GF pitas or naans to use as a base–but, I’ve really missed just being able to order a pizza! It’s taken a while to try, since the nearest dine-in location is not so convenient with me gimpy from the celiac complications, and our not having a car. Which is pretty frustrating, in itself, since that’s less than a mile and a half away, and I used to walk or cycle to the Homebase and Pets At Home there pretty often. There used to be another location in Romford town centre, but it closed for some reason several years back.

They started out launching the GF crust only in dine-in locations, but I see now that it is apparently now also available from delivery-only ones from a couple of weeks ago, which is handy!

But, we needed to go by the vet’s in Pets At Home over the weekend to pick up some more Advocate for the cats (it’s never not flea season, in this climate!), and Mr. Sweden suggested popping in Pizza Hut for a late lunch.

He can eat the regular crust, but we ended up splitting a Cajun Sizzler and a Best Ever Supreme (*hollow laughter*). Not surprisingly, the selection in UK restaurants is different from what I’m used to in the US, and it’s been better than five years since I was in a Pizza Hut at all, so I had a hard time deciding what to get. 🙂 Here’s the official menu, BTW. The GF crust only comes in a 9″ square, to easily distinguish it from any of the wheat crusts, and the size was about right for one person.

Well, the crust had a pretty good texture and flavor. It got a little dry mouthfeel as it cooled down, but overall I was impressed. They did well with the crust recipe.

But, I won’t be going back to that location for more pizza, because they were so stingy with the toppings, including sauce, that I ended up having to add some caesar dressing and pickled jalapeño rings from the salad bar for lubrication! The regular pizzas on other tables looked the same with that, so I think it’s just a subpar Pizza Hut location.

A bad shot of me holding up a piece, but you can maybe see that there is very little on top of the crust in cross section. 0_o  Plus Mr. Sweden’s knife-and-fork approach, which is too civilized for me! I also gnaw on bones in public.

Cajun Sizzler

Most of what I could taste with the Cajun Sizzler was the crust and chile rings. I was remembering it as a Cajun Chicken Sizzler, because the one we got didn’t have any pepperoni at all–but it was apparently supposed to, looking at the menu now. They were even skinchy with the onions. There wasn’t much chicken, either, but that did have a pleasant seasoning.

“Best Ever Supreme”. The little brownish dots are apparently the beef. This didn’t have more sauce; that’s mostly color spreading out from the pepperoni.

The “Supreme” had a little more flavor from mostly the pepperoni, but yeah. I would be embarrassed to serve something like that, for (I think) £8.95. Mr. Sweden paid, and I wasn’t paying much attention to the price. It isn’t clear on the online menu, but I think they are charging “regular” size price for the smaller GF crust version. (Fair enough.)

I didn’t want to complain too much at the time, since the hub was thoughtful in suggesting it and then sharing pizzas when I couldn’t decide what to get, but yeah. Overall, it was a disappointing experience, but I am chalking it up to a not-so-great individual restaurant location. And, now that I know it’s available now, I look forward to trying some more from the delivery-only location just down the road. 🙂 If I weren’t already cooking some red beans for tonight, I might call it Pizza Night.

That was Sunday, and today (Tuesday) I am still not noticing any ill effects. So, maybe the round of restaurant roulette was OK from a cross-contamination standpoint. *crosses fingers* I seem to be less sensitive to traces than some, though, in terms of violent symptoms, so YMMV even at that restaurant location. (It probably doesn’t do much for nutrient absorption, anyway, and I’ve been trying to be more careful lately.)

Still to try: the Dominos version. 🙂 Even though I have some problems with the parent company’s political activity in the US, and how they treat their workers: I’ll take extra cheese, olives, no homophobia (the two things are not unconnected, AFAICT). At least the corporate Operation Rescue ties are false, according to Snopes, though I am not pleased with the personal contributions there. Desperate celiac pizza lover here, though. 😉

Also, I see that there is a nearby Zizzi location, serving GF pastas besides risottos, which I am totally going to have to try, even if they don’t have GF pizzas or calzones.

Good gluten-free bread machine results

(As usual, you can click through for a larger version of any photo.)

I was reminded again today, baking another loaf of bread, that I hadn’t yet gotten this posted. I’m still having problems with the osteomalacia, and have been running into some symptoms of the vitamin D deficiency (and hypocalcemia) again this winter in spite of supplementation, including the low energy and fatigue. So I haven’t been able to post as much lately as I’d like. There are a lot of step-by-step recipe photos waiting for writeups. *wry smile*

But, it took me a while to figure out a consistently good bread machine recipe and techniques for basic sandwich-type bread, and I thought I should share what’s been working well here.

I lost the first recipe I was getting consistently good results from, and haven’t been able to find it again online. But, I was glad to try this one: Finally, Really Good Sandwich Bread: Our Favorite Gluten Free Bread Recipe, from Gluten Free Cooking School.

That looks to be a good basic recipe (with no dairy, and the option of egg replacement), but of course I had to fiddle with it. 😉 Here’s the version I’ve been using:

  • 1.5 packages of fast-acting yeast, or roughly 1 tablespoon
  • 1 tablespoon sugar
  • 0.5 c./about 125mL water a bit over body temperature. As long as it’s not hot enough to burn your skin, it’s OK.

Mix that up in a coffee mug, and set it aside for the yeast to proof while you get everything else ready.

In another bowl (I just use a handy British pint measuring cup), mix the dry ingredients together:

  • 2.5 cups/British pint/roughly 600mL flour blend (I’ve been using roughly a third each of chickpea flour/besan, brown rice or sorghum flour, and finely ground white rice flour)
  • 2 teaspoons xanthan gum
  • 1 teaspoon salt, or more to taste, since this makes a fairly hefty loaf and I like salt 😉

In the bread machine loaf pan, combine:

  • 2-3 lightly beaten eggs, preferably at room temperature
  • 1 c./250mL kefir, buttermilk, or yogurt warmed to about body temperature (a good use for any that’s gone very sour!)
  • 2 tablespoons oil or melted butter

By this time, the yeast should be threatening to foam out of the cup, and we’re ready to go. 🙂

As with most baking, the behavior here will vary depending on your ingredients, the weather, and especially your particular bread machine. But, this is what works best with mine: a circa 2004-vintage Kenwood model, which helpfully came with a GF cycle I didn’t even know I needed then! If yours doesn’t have that, the cake setting is supposed to work pretty well. A GF dough doesn’t want more than one rising period, so the regular bread cycles don’t work as well.

I didn’t think to get photos before everything was mixed up in the pan, either when I took these photos or today.

But, add the proofed yeast into the pan with the other liquid ingredients. I have found that it works best to start the cycle before beginning to add the dry ingredients gradually and carefully, so it doesn’t throw flour all over the place. Especially with the xanthan gum in there, it tends to glump up and need more stirring to mix up properly if you just dump all the flour in there before turning the machine on.

It still takes more attention during the mixing and kneading stage than a wheat flour bread would, because the dough needs to be wetter and doesn’t move around the pan as freely. A rubber spatula is your friend, with a table knife to scrape the sticky dough off it back into the pan. 🙂 You’ll need to scrape the sides of the pan down, and make sure it all gets properly mixed. I usually fold the dough over with a spatula a few times later on during the mixing/kneading process, just to make sure it’s uniform.

The dough consistency should be kind of like a thick br0wnie batter starting out; it also takes a while for rice and bean flours to absorb liquid, so hold off on adjusting the consistency for at least five minutes after it’s thoroughly mixed up.

It’s hard to get decent photos inside a working bread machine, so this is what we end up with instead. 😉

Dough near the end of the kneading time. This loaf still turned out a little moist and dense, but that’s better than dry and sandy end results!

At the end of the kneading cycle. As you can see, it tends to get a big air bubble around the paddle, at the bottom of the pan. I’m knocking that out with the spatula, and about to smooth the top of the loaf.

As smooth as it’s going to get! It’s hard to get all the gooey dough scraped down off the sides, but that’s good enough.

Even starting out with warm liquid ingredients, the rising time on my machine is still not long enough. I usually have to switch the machine off and let it sit for an extra hour or so, then use the “bake only” cycle.

I was afraid this would collapse if I let it go much longer. You can see how the top is starting to crack, with bubbles visible. That’s a better indication that it’s risen enough than the common “doubled in the pan” standard, in my experience.

And, finally, a finished loaf of bread! This one did turn out a bit denser than I’d wanted, from slightly too-moist dough, but it was still delicious.

Carefully pulling the very hot paddle out of the bottom of the very hot bread with a chopstick! It tends to stick.

This basic dough has also worked well for pizza crust, BTW. You can make the dough a bit stiffer, but this still won’t roll out well. Best just to plonk it onto a well-oiled pan with a good sprinkling of corn meal, and spread it out with your hands. Smoothing it down with slightly wet hands works better for a xanthan gum dough than flouring it for ease of handling, IME.

This post has enough to do with the long-term effects of celiac and gluten sensitivity that I am reblogging it here.

Urocyon's Meanderings

Content note: Discussion of dental fear, with descriptions of bad experiences with dental treatment.

One of my personal worst fears seems to have come true: it looks like I probably have an abscessed molar, and can’t keep putting off having some dental work done. Last night, I went ahead and e-mailed a nearby dental anesthetic clinic to try to set an appointment (yes, luckily there is one!), and have been spending the morning so far avoiding my e-mail and having anxiety attacks thinking about it.

I have never had an abscess before, myself, but seem to have pretty much all the symptoms, including a migraine-level headache and earache and other nerve weirdness on that side of my face. I’ve always been afraid of them, though, because my mom had a serious problem with them, and got very sick a lot and ended up losing a lot of teeth from…

View original post 5,211 more words

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

This is something I posted recently on my main blog, and it seemed very, very relevant here, so I am crossposting.

Not surprisingly, I haven’t been posting here lately after the premature “I’m back” post, because I underestimated how much extra supplementation was needed over the winter–and have been having fresh problems with things like stress fractures and hypocalcemia symptoms again. And, I just noticed that those include steatorrhea, and no doubt other digestive problems. 😐

Other posts under the vitamin D tag on my main blog.


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.

Emphasis in the original, this time. 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.)

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!

New little kitchen buddies: Kefir

As I’ve mentioned before, I grew up cooking with and drinking a lot of (cultured) buttermilk, and people just don’t use that much here. (Greater London;  eating and drinking clabber in general is apparently traditionally more one of those offputting Gaelic habits brought to Southern Appalachia. 😉 ) You can buy little cups of it like cream for cooking in stores here, but that’s it.

300mL container, slightly more than a cup

A few years ago, I got a good vigorous culture going, a jar of which left in the fridge even made it through a 6-month trip back to the US after some coddling and coaxing to revive it once I got home! Unfortunately, it’s not around anymore, because I went off dairy for about a year to see if that would help my allergy symptoms.

No such luck; the “milk allergy” I was diagnosed with as a toddler just seems to be lactose intolerance, probably from the Native side of things. That was the ’70s, when it frequently got called an allergy. Getting rid of most of the lactose through fermentation is a good bonus there, too. Mr. Sweden is still hesitant to eat or drink anything like that now, since he became part of the 2% there who can’t handle lactose after stopping drinking much milk for a while in his early 20s! He got really sick off commercial filmjölk, and doesn’t trust any of it now without cooking it first.

A couple of weeks ago, I tried to get another culture going with exactly the storebought buttermilk in the picture. It must have been a pretty weak culture coming from the store, though, since the first batch was great but then the milk just went nastily sour. 😦 After that, I considered either buying a culture of filmjölk, or just getting  Mr. Sweden to pick up a carton to try as a starter from Totally Swedish. (He refers to it as buttermilk in English–and after drinking it when we were in Stockholm, I can see why.) I may actually still try that, at some point.

A liter carton--getting closer! 😉

Given my luck with storebought stuff as a starter recently, I thought I might as well just look at commercial starters–a small investment for a better chance of success! Looking at different cultures available, I was reminded of kefir, which I hadn’t actually tried but had found intriguing before.

There are a lot of overblown-sounding health claims out there, but what I found particularly appealing was the idea of a very stable culture that works at room temperature, without the need to sterilize jars and scald the milk. (Similar with fil and similar Nordic cultures, actually–good things in a colder climate!) I’ve had trouble keeping warmth-loving yogurt cultures going for any length of time because of the hassle and coddling required, actually.

The offputting bit? The kefir grains themselves. I know it makes very little sense, but I found the look and described texture of them unpleasant enough that I decided not to try it when I first looked into kefir a few years ago.

But, I finally figured it was worth trying, and got some starter grains off eBay about a week ago (for about £2 postage and packing, from an individual finding new homes for extras–my grains have already at least doubled in volume!).

I still haven’t brought myself to touch them with my fingers, but they’re actually not that bad to look at. Kind of like cooked cauliflower.

After straining a batch this morning. That's a US-size teaspoon; I got a tablespoon of grains, and have a lot more already! It turned out looking more yellowish against the very white colander.

So far, it has been really easy to deal with, even with the added step of straining out the grains and putting them back in the brewing jar. That takes a few minutes once a day, and a good hot water rinse is good enough for the colander and funnel.

I’ve been scalding the milk even though it’s not totally necessary, to give the culture a better chance until it gets well established. That seems to be happening, so I may just pour in a fresh bottle of milk for the new batch in the morning, as is. We started getting (super-fresh) milk delivered* in returnable glass British pint (20 oz./568 mL) bottles a few months ago, and one of those is just perfect for the size batch the amount of grains now will easily make in a liter jar. That’s also easy enough to drink up; I may scale up some to have more for cooking, before too long.

Since I moved up to a liter pickle jar (soaked with baking soda to get rid of the residual sour dilly smell!) from the initial 500 mL/bit more than a US pint mayonnaise jar, I’ve just been wiping some of the residue off with a paper towel above the milk line, and reusing the same jar. When it gets too curded-up, I’ll switch to a clean jar; as it is, the residue of the last batch should help it culture more quickly.

Before the grains and new milk went back in this morning.

Just put the grains back in, add milk, swirl it around a little, and leave it sitting on the counter for the wee beasties to do their magic. A swirl now and then during the day will help bring new nutrient-rich milk to the grains. It’s kind of interesting seeing the clabber form around the grains, which for me have been floating at the top of the new batch and gradually sinking to the bottom.

For more on making kefir, see the How-To page on Dom’s kefir site. A bit eccentric, but more info on kefir and things to do with it than I have managed to read through yet. 🙂 From Tammy’s Recipes, there is also a very good pictorial with lots of discussion (including troubleshooting) in the comments,Photos and instructions for making homemade kefir.

I’ve been straining the finished kefir clabber into a bottle to keep in the fridge, and just topping it up with new batches. (When it gets too curded-up, again, I’ll pitch it and use a new bottle. Trying to wash it out for recycling would be more trouble than it’s worth, from experience with other cultures.)  So far, I’ve been drinking it moderately sour, but would like to try aging it a little more at room temperature after straining.

Please ignore the counter clutter. My kitchen is a wreck, like the rest of the house right now. Now eating the elephant one bite at a time, as I'm able... 😉

The first couple of small batches after the grains arrived turned out kind of vinegary-smelling and yeasty, and I was glad I’d seen discussion of this at Tammy’s in particular. It often takes the grains’ organisms a little while to get back in balance after shipping or other stress, but they pretty quickly straightened out into something very pleasant-tasting, a lot like cultured buttermilk but with some extra tones I’ve been enjoying. It does have a nice bit of sparkle on the tongue, a lot like some buttermilk cultures will take on after a while.

Some of the bubbles are just about visible here.

I wasn’t even about to try drinking the first couple of batches–not because they would hurt you in any way, but just because that just didn’t smell tasty at all!–but ended up using the obviously very yeasty first batch in a “sourdough” starter I’m planning to post about next. Considering it was less than a cup of milk a go to begin with, pouring it down the sink is not much of a loss!

Now, after only about a week of letting the culture get acclimated, it’s tasting great. And I’m looking forward to seeing how the flavor develops, as the grains continue to get settled in.

A nice cup of just-shaken kefir. Well, a tea-stained one, so easy to get with the liquid chalk that passes for London water. *sigh*

Right now, I’m just pleased to get a good substitute for buttermilk or yogurt in cooking and for drinking. But, the more fantastic health claims aside, I’m hoping that the regular cups of stuff fairly jumping with multiple strains of probiotics will also do me some good.  Like a lot of other people with celiac/gluten intolerance, apparently, I have continued to have some problems with irritable bowel.

Come to find out, a vitamin D deficiency (which often results from celiac, yes) will cause IBS symptoms because it seriously messes with your immune system:

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.

I am actually wondering if this is part of the reason I started reacting so strongly to gluten in the first place, with the increased gut permeability from that. It all looks very interconnected. But, whatever the sequence that got things rolling, with any luck regular homebrewed probiotics alongside correcting the deficiencies will help the lingering IBS symptoms!

But, yummy is enough. 🙂


* BTW, I still get tickled at still being able to get milk deliveries here; they stopped doing that before I was born, back in Virginia. I had seen/heard the electric milk floats going past in the wee hours–there was a smallish dairy depot just down the street until a few years ago, so we had a lot of them coming and going!–but was glad to find out how to sign up for delivery, when they started advertising for  We can get unhomogenized organic milk for £0.79 a glass pint, fresh on the doorstep–not a bad deal at all! I hadn’t used anything but homogenized before, either, but am liking this.

I’m back!

It’s been a long time since I’ve posted here, but hopefully this will change. My health really took a nosedive, and it turned out that I seem to have had one degree or another of a vitamin D deficiency for a long time now–really set off by moving to the Land of No Sun–which has been behind most of the chronic pain and other health problems I’d been running into. That and the pain from it have also been causing a lot of brain fog with word-finding difficulties, like I’ve been glutened–but, I guess anything that throws your system sufficiently out of whack will do that! Just knowing what’s going on makes a huge difference in coping with it, though.

Right now, I’m on the mend (*knock wood*) from a  couple of pelvic insufficiency fractures from osteomalacia, and just about able to stand up in the kitchen more. Though I’m trying not to push too hard, difficult as that can be. 😉 With any luck, I’ll also soon be up to posting more food-related stuff. The way things have been going, probably a lot of mineral-dense food!

Soon, I am hoping to finish putting a post together on celiac/gluten sensitivity and bone density problems from malabsorption deficiencies–and probably add a new links section to the sidebar–because it’s very relevant, and something that a lot of doctors unfortunately do not think to look out for even in those of us diagnosed as adults. My lazy former GP did not send me for nutrient status testing or a bone scan at all, and this does not seem to be unusual.  When you’ve had malabsorption problems for years, possibly for life, getting off the gluten is just the first step toward letting your body recover–rarely the only thing necessary. That kind of imbalance will take a toll. Given that a scary percentage of adult-diagnosed celiacs complain initially about a certain pattern of chronic pain (usually centered around lower back, hips, legs) from this kind of thing, the lack of knowledge there is shocking and still makes me angry. Both osteomalacia and osteoporosis are common complications, not too surprising when your body has trouble getting enough minerals and the vitamin D to use them.

So, more info on that should be coming soon. (Part of the problem with putting it together before was that I kept getting worked up over the number of people who keep getting dismissed with this stuff, until the problems have become really serious.)  And, hopefully, there should be more food posts coming. It’s a relief, feeling like cooking more again. 🙂

Medication for gluten sensitivity?

There is an interesting post from a few days back at Gluten Free GobsmackedWould you take a pill?, which I just ran across.

I had seen various speculations about developing medications to treat gluten sensitivity, and been pretty dubious overall. My comment over there threatened to turn into a book (and has grown a lot since then, especially since I went off on a diagnostic-issues tangent!), so I thought I’d post the bulk of it here instead:

A very interesting post!

While it might be a convenient option at times, as a number of other commenters point out, I don’t think I would want a daily pharmaceutical treatment for my gluten sensitivity. I would like to have the option of taking something in case I’ve accidentally glutened myself up, more in the realm of antihistamine or even antidote than any kind of perceived “cure”.

This comment turned pretty long, so I have made it into a post instead of clunking things up here. 🙂

While it’s inconvenient, and makes my life difficult sometimes, I don’t think it needs to be “cured” (if that were even possible) any more than lactose intolerance does. I actually have very similar views on both, which have been influenced to some extent by being a member of a minority ethnic group; a lot of my ancestors didn’t clap eyes on either wheat or dairy until about 400 years ago. Assuming that everyone should eat exactly the same things, everywhere–and it’s on them if they can’t–is kinda arrogant. The health problems caused by continuing to eat things your body reacts badly to are definitely a legitimate medical concern, but I’m not sure that it’s reasonable to consider these genetic differences medical problems in need of drug treatment, per se.

I, too, am far happier and healthier since I’ve had good reason to pay more attention to what I’m eating, and cooking a lot more from scratch with good-quality ingredients. Paying attention to what actually works for my body has been an excellent change. While the availability of a pharmaceutical treatment wouldn’t change my eating habits, I’m not sure that using it as a regular substitute for examining our lifestyles and learning more about nutrition and what works for each of us individually would be a good thing for many people–even if the pills did work as promised.

Nicole Wang raised an excellent point:

I wince at the thought of well intentioned people asking me why we “won’t just take the pill”

Exactly. This is liable to turn into an extra layer of perceived social responsibility, so we won’t inconvenience other people with our wacky eating habits. I’m concerned about the pressure on parents, in particular, to medicate their kids “if they care about them”. It would also take away pressure for any kind of systemic change–even as simple as providing more nutritious, less allergenic school lunch options, instead of the same old refined wheat-based meals washed down with milk.

I mention kids in particular, because I can easily see this affecting people who are newly diagnosed a lot more. Recognition is better now in the US as it is; I was almost 30 and had moved to the UK (with more awareness then) before I even found out that gluten might have been causing problems all my life. If there is medication available–and it’s seen as even more of a real, treatable health problem–you can bet that more people are going to get tested earlier.

Which also leads me to related concerns about even more medical dismissal of non-celiac immune reactions to gluten, and minorities’ reactions further getting missed. Celiac is already seen as a problem primarily found in obviously European-descended populations, when there haven’t even been any kind of comprehensive prevalence studies among certain other groups (who might be more prone to non-celiac manifestations, anyway, judging by the scarce data available).

In the ’80s, the “fat, fair, and 40” profile of gallbladder problems was still current (I don’t know about now). My mom didn’t fit any part of that profile when she started having trouble, so her repeated attacks from gallstones were dismissed for better than 10 years until they blocked the bile duct and required an ER trip and emergency surgery. In fact, they now know that “Native Americans have the highest prevalence of gallstones in the United States. Among the Pima Indians of Arizona, 70% of women have gallstones by age 30” and that “Women between 20 and 60 years of age are twice as likely to develop gallstones as men.” Unfortunately, it’s easier to see what you’re looking for.

For example, people keep asking things like “Can Native Americans get celiac?” (better than average partial answer: “Most research being done has been Euro-Centric but recent studies indicate that Celiac Disease is present in every race and culture.”), or “Does anyone else in the Native community have it?”. Anecdotally, it’s a big problem (“Many, many Native Americans are lactose-intolerant and have gluten intolerance or celiac disease”)–which kinda makes sense among a population only recently exposed to grains containing gluten–but nobody really knows, because there still haven’t been any studies other than within a few individual nations, AFAICT! That still totally neglects non-celiac autoimmune reactions to gluten which don’t destroy your intestinal villi, but can still make you pretty darned sick. I haven’t seen a lot of prevalence studies on that, much less looking at different populations around the world and how gluten sensitivity might show up differently among them.

Unfortunately, some research really does seem to be conducted along the lines suggested in the second comment on a Washington Post blurb I ran across, Celiac Disease Increases Sharply :

It’s my impression that celiac disease is more common in white people of northern european origin.

Native Americans are the other ethnic group in that area, so you’d hope they were eliminated from this study.

It seems likely that blood samples would have been taken at the Air Force Base as new recruits were processed. So were they to be non-natives then the samples could be compariable.

In other words, “there is no evidence available, so let’s exclude people who might complicate our results…and incidentally give us some useful evidence.” This is also a problem with other medical research, BTW. As Frank Brown, M.D. put it, ‘Native-American subjects have historically been left out of medical research, and inclusion is necessary to “show the disproportionate rates of illness among Native Americans and the disparities in funding for diagnosis, prevention, and treatment of disease in this population.”‘ Similar applies to other minority groups, when they’re not getting lumped into largely meaningless categories like “Asians and Pacific Islanders”. (And we multiracial types really gum up the works.)

That tangent aside, I’ll get back to the idea of drug treatment after someone manages to get the diagnosis. 😉

If there is at least one kind of pill available, I’m concerned that this option will get pushed to the exclusion of managing gluten sensitivity through lifestyle changes, in a very similar way to how most doctors seem to think of managing Type 2 diabetes without meds: it’s an unreasonable hassle, and very few people are likely to be willing or able to do it. I wonder how much dietary change would still even be mentioned as a feasible option, once drugs are available. Based on some of the “but what could you possibly eat?!” responses we get already, that is unfortunately far from a stretch.

In the US at least, I’d also hate to see how this could affect people who can afford sacks of cornmeal, rice, and potatoes a lot more easily than newly developed, expensive medications–once they’re even diagnosed, with poorer access to medical care in general. Here in the UK, gluten-free food is considered a medical necessity to the point that you can get it on prescription under the NHS, on the basis that “[f]ollowing a gluten-free diet is easier when you can get adequate supplies of staple foods such as gluten-free bread, pasta and flour.” (You don’t say!) Though I’m sure my previous GP partly avoided sending me for testing because not only does the testing itself cost, the subsidized prescription food is only available to people with official celiac diagnoses. But, in theory, it’s a saner system, even if the “giant HMO with a monopoly” implementations sometimes leave a lot to be desired.

See also Drug Companies Expect Big Profits from Celiac Disease Patients. This is a very real concern, and I have trouble believing that even though most of the prospective medications being discussed are not supposed to be for regular use instead of a gluten-free diet, there won’t be a future push toward using drugs as a first-line treatment. There’s just too much money to be made there.

I am also very wary of what any medication(s) developed will actually do. Will it mask symptoms? Will it prevent the autoimmune damage to people’s bodies, as other commenters have pointed out? Will people continue to have silent nutrient absorption problems, maybe even exascerbated by the meds? How will the end user know what it’s really doing, as opposed to what models show that it should do? Are unforeseen side effects likely to be worse than the original problem?

Having come down with iatrogenic Type 2 diabetes from the metabolic effects of other medication in my early 20s–then B12 and thiamine deficiencies from malabsorption caused by a common diabetes medication!–I have good reason to be concerned about this kind of thing. Avoiding gluten in the first place is unlikely to cause even the “minor” common side effects, like headaches, drowsiness, and nausea. 😐

You introduce a medication into the human body, you have no idea what unpleasant effects it might have down the road; this is not a problem with avoiding eating gluten in the first place in a reasonably informed manner. That’s a particularly important thing to bear in mind when dealing with children who aren’t yet able to make informed decisions for themselves, IMO. First do no harm, and all that!