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The ups, downs, and runarounds of Celiac Disease and food sensitivities

Archive for the category “Sickness & Health”

Leak in the gut?

I’ve broached the subject of leaky gut with my gastroenterologist and DO, but neither seems to want to talk about it. I’ve even mentioned research I’ve read, yet they just brush me off. Based on the numerous exclusions from my diet and continued GI and systemic symptoms, I do not think my gut is healed. I know a handful of Celiac folks who, like me, are 99.999% certain of no gluten contamination for whom this is also the case.

So what’s the dealio? Check out this podcast posted on http://www.glutenfreeschool.com/ with Dr. Amy Myers, MD.

Also see her checklist of the symptoms of leaky gut and how to address the issue. Let’s increase discussion of this condition!

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Food For Healing

Food For Healing

An interesting discussion of foods that heal (VEGGIES) or harm (processed food).

“When it comes to food, we have all heard plenty about what is bad for us. But what about food that is especially good for us…. foods that keep you happy, satisfied, and might even be used to cure illness?

We pursue just such nutritional possibilities.”

Guests:
Jeremy Akers, Ph.D., R.D.
 – Nutrition researcher.  Registered Dietician. Assistant Professor of Health Science, James Madison University. Former Obesity Prevention Nutritionist Coordinator for the Virginia Department of Health.

Robyn Coale, R.D. – Registered Dietician. Author of the nutrition blog The Real Life RD. Director of Nutrition for the Scottsville, Virginia based medical group Revolution Health Center.

Additional Contributor:
Gregory S. Gelburd, D.O. – Family practice physician.  Co-founder of the Downtown Family Health Care Center in Charlottesville, Virginia.

International Celiac Disease Symposium 2013

In case you wanted a preview of some of the topics discussed and conclusions reached at this annual conference devoted to all things Celiac & gluten, here are few links!

NPR just broadcast a story on results suggesting that changes to strains of wheat and altering gluten content of wheat are not to blame for the increase in cases of Celiac Disease/gluten sensitivity. After reading Mary Roach’s Gut, I find it much more palatable and believable that, as the NPR article concludes, there is so much we still don’t know about the gut, genetics, and autoimmune functions of the body (meant to protect us, but in the end self-destructing- I imagine little GI Joe antibody troops who’ve lost their leader blindly shooting off rounds into our bloodstreams). Also, if you have no symptoms (and ARE NOT RELATED TO SOMEONE WITH CELIAC/NCGS/AUTOIMMUNE CONDITIONS), keep on glutening on!

Celiac and the Beast dispels several gluten myths as addressed during the conference.  Unfortunately, there doesn’t seem to be a point to my habit of taking a gluten enzyme on the rare occasion I dine away from home to counter the appearance or intensity of my reaction to a dust particle of stray gluten. Womp womp. But promising things to come? Also, I didn’t realize that some folks thought coffee contained gluten. I never thought it did, but I certainly cannot consume it (or other sources of caffeine) and expect to spend my day off the commode and out of bed. Celiac = busted gut. Poop transplant, please? And finally, gluten in shampoo (yep, wheat was in my shampoo and conditioner when I took the time to read the ingredients shortly after my diagnosis) and other toiletries  is not capable of somehow permeating the skin and stealing your soul like a bloodthirsty extra-terrestrial (by which I mean shriveling the villi). BUT. Some of us are bad at, say, putting on lotion, then proceeding to pick up a snack to eat. Or rinsing out the shampoo-y residue in the kitchen sink (which, admittedly, may have just one tiny dirty dish or two) prior to discarding the container in the recycling bin. When it comes to playing the odds of being laid up in bed with an intestinal on/off switch unpredictably yet violently maneuvered by a trigger happy 2 year-old, I’ll go with gluten-free everything, permeability or no.

Lastly, the ever-credible Living Without has posted a brief blurb about the conference; I certainly look forward to their follow-up (they really top the GF ‘zines when it comes to reporting research).

Glutenfrei etc. in Berlin

So, Berlin! Such a great time exploring botanical gardens, graffitied alleyways, cathedral and crypt, festival of cultures (9 hour parade!), coffee shops, independent movie theaters, former Nazi then US Air Force airport… and so much more! Really, I don’t think anyone could go to Berlin and not find at least 1 thing of interest/merit, yet despite its size and cultural offerings, it is full of quiet, suburban pockets merely 5 minutes away from an attraction such as Alexanderplatz. Yes, I could definitely live there (though I’d prefer that the locals at least allow me to practice my shoddy German before automatically switching to fluent English). But, what about that niggling little thing that drives this entire blog?

What about the FOOD???

Well, I am happy to report that the situation is generally much brighter than what I had gleaned from preparatory internet perusal. So let’s get the negative over with first. I ate out twice (which is an anomaly, I don’t eat out in the U.S., unless I know that my 50+ list of problem foods/consistencies can be avoided), and those meals were certainly NOT reason for excitement, as I felt a bit sickly afterwards (one place said everything was gluten-free, but SOY SAUCE was an ingredient). I also idiotically ate the gluten-free airplane meals, which seemed safe enough (plain green beans, quinoa salad, gluten-, dairy-, egg-free cookie, mango chicken), but this is what really propelled me into severe symptoms of glutening on the way home (I was to the point of walking around the airport in search of a clinic- do they have those? In my desperate mind they did, but I didn’t find one). The thought of eating a meal that I did not prepare or supervise is such a luxury, of the pipe dream variety, and I still need to get over it. I did have to chow down on some serious baby food and sardines when on the go (hence the current hiatus from both), but open-air markets allowed for quite the selection of fresh fruit (and vegetables, if you can handle them uncooked).

ANYHOW.

The truly exciting food news is that Germany has quite a few brands that produce certified gluten-free grains, sauces, and bread-y goods! Ok, so does the U.S., but they have other allergens… In Germany, several brands are hyper-aware of individuals with MULTIPLE FOOD SENSITIVITIES. This seems to be the case across Europe, as many allergen-free products in stores came from Italy, the U.K., France, etc. I could purchase certified (< 20ppm, designated facility) plain gluten-free grains, but I didn’t, because there were so many exciting variants to try! Buckwheat flakes (like corn flakes) with JUST BUCKWHEAT NO SUGAR NO PRESERVATIVES JUST 1 INGREDIENT were my absolute favorite. Puffed millet (1 ingredient) was also quite exciting, as I can’t seem to find a cold cereal in the U.S. that suits. Rice cakes with puffed quinoa, millet, amaranth, etc. made it hard to return to plain old rice-rice cakes. The brand Werz is definitely the forerunner in certified gluten-free and allergen-free goods (one of the few brands that did not use cornstarch in everything); it was always present in organic “Bio” stores and Reformhaus natural shops. They offer several grain, cereal, cookie, and cracker options, with egg-, dairy-, and fructose-free products also (I have never seen a gluten-free product in the U.S. that was labeled as fructose-free, even though this is a rising digestive problem!). Some online reviewers claim that anything from Werz tastes like sand, and yes, I would not recommend their cakes unless you need to be rendered speechless by a palatal coating of dry, dense baked good, but their cereals, whole grains, and cookies were a delight. Learning the names of ingredients is crucial, though, because Werz does produce gluten-containing counterparts with spelt and kamut, but GLUTENFREI is gluten-free, and very clearly stamped on packages, along with the x-ed wheat symbol (official gluten-free symbol in the EU).

I found a most lovely loaf of gluten-free bread with pumpkin seeds from a bakery called “No Gluten”; it was nice and crisp on the outside, soft and bread-y on the inside. This GF vegan bread was in a special wrapper in the bakery section of a Bio Company store, and they offered other varieties. I was initially skeptical of cross contamination, but finally persuaded my German-fluent host to ask a bakery worker, who was incredibly knowledgeable of the bakery’s practices (they deliver fresh loaves to Bio Company, and also make cake, which I sadly was not able to track down) and cross-contamination precautions. We even found gluten-free beers at several natural food stores, though I only tried a tiny bit of each as alcohol doesn’t sit well. But just the presence of gluten-free goods, even if I couldn’t tolerate all of them over some additional digestive issue, was so comforting. My favorite store was Veganz (yes, vegan with a “z”), where we found rice cheese from Italy, certified gluten-free carob powder (AHHH!!! So hard to come by here!), and cashew-based ginger ice cream with FOUR INGREDIENTS (cashews, ginger, agave, vanilla). It seems that preservatives are more of a concern in the EU, as they should be. And now for some eye candy.

Gluten-free beer made from organic millet; gluten-free crumbs on tableIMG_0341

Gluten-free beer from organic rice, and some Euro change

IMG_0343

Gluten-free, egg-free, dairy-free, fructose-free whole grain rice dwarvesIMG_0345Gluten-free, dairy-free, egg-free buckwheat rounds; kind of like a thicker pita

IMG_0346

I would buy stock in this bread: gluten-free, egg-free, dairy-free sourdough bread with teff, millet, and buckwheat flour. Thin slices, regular size, comparable to the sourdough bread that Germans eat all the time (had to double-check package as it tasted like the real deal to both of us!). How I wish I could find you in my country…IMG_0347

When I finally came to terms with my body’s reaction to gluten GIF

It’s only embarrassing if you care what people think.

Or if you’re in a confined space. Such as an airplane. With turbulence to fuel your rebellious insides. And you are foolishly too proud to opt for an adult diaper. And then you have to stand in line for customs, as if you hadn’t exhaustively shared your malodorous cloud with new friends. I hardly felt well enough to care, but in hindsight (har), I should have packed my Toot Tone and GasRight Strips.

What IS gluten-free?

Let’s just say that if I can’t give you a straight answer, then Ask.com will likely fail as well. We could just leave it at wheat-, rye-, barley-, oat-free, but can anything really be guaranteed to be free of traces? I mean, carrots grown in a field with none of the gluten grains around, harvested in a designated… harvester? Processed in a facility and on a line that has never seen the light (or dark) of gluten, packaged in a facility sans gluten- THAT is truly gluten-free. Bread, cookies, crackers, chips, sauces, soups, GF flours etc. that say “gluten-free” mean (if you’re lucky and they’re certified by GIG or another organization) a random sample of the product tested at less than 20 ppm of gluten. And oh do you hope the ELISA or other testing mechanism was accurate, and that you scored one of the loaves that was 20ppm and not one of the ones that wasn’t tested but is higher, and that you aren’t one of those Celiacs with hypersensitivity to levels below the 20 ppm limit (AHEM). Now, absolutely “gluten-free” for a Celiac is not as critical as “peanut-free” for someone with a deathly allergy to peanuts, yet it is still frustrating that “gluten-free” typically means “includes microscopic amounts of gluten.” I still don’t know what to make of labels stating “packaged/processed on a line/in the same facility as wheat” because this is discretionary, say-so-if-you-want-to, totally unregulated disclosure. So if one package sports this statement, it may or may not be safer than a package that does not even make an allergy statement. By law, wheat must be disclosed on the ingredients list, but not rye, barley, or oats. And I could go on… So, what IS gluten-free, you ask? What a rhetorical question!

Update: Check out what this apropos post has to say about gluten cross-contamination with fresh fruits n veggies (and try not to get too paranoid).

Celiac Awareness Month and Egg-free Meatballs

If you have Celiac Disease and you follow a handful of the top gluten-free bloggers, you may already know of some of the great posts and resources available for Celiac Awareness Month. I was a bit thrown off because there’s a national Celiac Disease day in September, but oh well, I guess I’ll take a month + a day! The NFCA has put together a wonderful page of resources for anyone who’s interested. As with any cause, an awareness month educates those who do not know about it and strengthens the ties between those who do. While I am more than happy to share anecdotes, tips, tricks, research articles, blogs, publications, and a comforting shoulder to anyone curious about the gluten-free lifestyle or Celiac disease, I have struggled with how having Celiac Disease fits into my identity as a whole human being. There are times to talk about it, and times to let it sit. There are people who really want to know more, and there are those who balk at the thought of discussing health issues (and poop). From my experience, it is important to promote awareness in the most efficient, effective way. This means supporting new inductees, or discussing the possibility with those who have unresolved GI issues. Maybe throwing out a few of the clenching facts, like the prevalence, the wide variety (or lack) of symptoms, or the importance of testing before going gluten-free at a get-together IF the current topic allows. But no one wants to be beaten over the head with a credo. Unfortunately, people with health issues are perceived as weak, whiny, and hysterical. I would normally say a big stinkin WHO CARES, but perceptions DO matter in employment/professional situations. In the first few months after my diagnosis I found myself spilling my woes to anyone and everyone. This is not effective advocacy (and it wasn’t all that therapeutic, either, because not many folks know how to handle such a serious topic, so they kinda just avoid you). Effective promotions of awareness include alerting an employee when a rice/quinoa mix is not gluten-free because it has barley, so it should not be in the labeled “gluten-free” section, telling a bar that if they don’t know the specific ingredients of a beer then they shouldn’t claim it is gluten-free, interacting with fellow bloggers in a supporting manner, going to support group meetings, and patiently correcting inaccurate perceptions (e.g. WEIGHT LOSS, wheat-free = gluten-free, Celiac is contagious…) So, in sum, I try to be aware of how I promote awareness, so that the accurate message is heard and appreciated in as tolerable a morsel as possible. Oh, and of course it is a YEAR LONG endeavor, this month just serves to remind us of that.

Check out a thoughtfully succinct message about the month!

That said, I threw together some turkey meatballs that seemed worthy of note. There are lots of online egg-free meatball recipes to choose from, but I pretty much went with instinct on these puppies.

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EGG-FREE TURKEY MEATBALLS

1lb ground turkey (I used 99% lean, any kind will do)

1/2 c. breadcrumbs (I have a large cache of failed, pulverized gf baked goods in my freezer for this very purpose; I believe today the sample came from carrot sweet potato muffin rejects)

1 to 1.5 c. spinach (I used frozen spinach, thawed and well-drained)

1/2 c. shredded/grated vegetable of choice (I did carrot, to stick with the rejected bread crumb theme)

spices/herbs to taste, e.g. parsley, ginger, onion powder, garlic powder, tarragon, fennel…

1 flax/chia or Ener-G egg (mix 1 Tbsp ground flax or chia with 2-3 Tbsp hot water and let sit, or 1 1/2 tsp Ener-G egg replacer with 2 Tbsp hot water and let sit until egg-y)

Preheat oven to anywhere between 350 and 375 (my oven likes to jump around). Mix everything up in a large bowl. The mixture should be somewhat cohesive once you mix in the egg replacer. Use your hands to form small balls and place on greased or parchment papered baking sheet. Bake for 15 minutes or so, checking and flipping baking sheet at the 10 minute mark. Use a kitchen thermometer to test done-ness (160-165 degrees). These can also be made into larger patties and baked or fried. Hooray! Expanding the borders of a “restricted” diet yet again!

Cooking to Live

The Healthy Apple’s struggle with food sensitivities while traveling, in social settings, exploring alternative medicine, and moving on

First GIG of Charlottesville, VA meeting this Thursday! And brief musings on the mind-body connection of multiple food sensitivities.

Ok, so Richmond has it’s own GIG division, and there are many wonderful non-GIG support groups spread across the state, but the first meeting of the Charlottesville GIG should have all ye gluten-freebies hustling to sample the wares of not one, but FIVE local bakeries! I know I’ll be making the trek, and I am particularly excited that some of the bakeries can produce egg-free, dairy-free goodies as well! Check out their Facebook account for additional resources, information, and updates! Details below.

Speaking of additional food sensitivities, I was successful at avoiding problematic ingredients at the Gluten-free Expo in Roanoke (What a lovely event! Thanks to the Carilion healthcare system, VA Tech’s dietetics students, one of my blogger idols, Ginger Lemon Girl, and numerous vendors for making this happen!) this past weekend- BIG accomplishment. Now, I would never consume gluten (in fact, I am probably a bit over-the-top with my fear and loathing), but I had fallen into a trap of “treating” myself to gluten-free food containing dairy, egg, soy, corn and other ingredients that an elimination diet showed really can’t just get along with my gut. A recent visit to a dietician renewed my motivation to avoid problem foods (it sounds easy… but those little buggers called taste buds get cravings sometimes) to overcome the cycle of sickness and malaise. And hey, it’s been a week, and I feel good! The dietician also stressed that moderation is key (yeah, who didn’t know that already, but again, putting it into practice can be difficult) to avoiding crazed OMG I CAN EAT THIS binges (or in my case, I can’t, but since it’s not life-threatening, maybe just a little?). So I’ve been going for the frozen banana “ice cream” a bit more often, just in smaller amounts. Or making alternative cheese sauces to hit the cheese-craving spot. Vegetable-based vegan alfredo anyone? How about some dairy-free, soy-free, nut-free ricotta? Both were so lovely that I made extra to store in the freezer. Handling the I-can’t-have mentality by creating alternatives can be dangerous, because nothing will taste like a nice block of brie or Camembert, but I think it is emotionally healthy and nurturing to find new combinations of tastes that are in the same mouth-feel, flavor category (Oh why didn’t I just go in to that Girl Scout cookies knock-off recipe thinking “I am making a yummy cookie” vs. “This will taste exactly like a samoa”? All in the head, indeed!). The importance of the mentality with which we approach eating ties in to the concept of mindfulness, by which one sits down to a meal, focuses on each individual bite, and sloooows down to really achieve maximum satisfaction and nourishment. The mind and body are not quite as separate as Descartes would have had us believe- how you intellectually analyze a physical sensation impacts the experience of that sensation, and vice versa! Not to mention the effect of emotions, whether it be denial, longing, or anger (GAH gluten, GAH!) which I would argue all need expression at some point, but it might be better to set oneself up for success at mealtimes, thinking with joy, ah, a new kind of bread! vs. this had better darn well taste like the French baton I used to make or I will be so very sad! This discussion of intellect-emotion-body ties in to a great book I’m reading, and will eventually review!

UPDATE: Not five, but SIX local bakeries!!!!

Sheila Cerelloni of Bakery Box              Sue and Stephanie of Stevie G’s Gluten Free Bakery

Linda Newman of Mixing It Up Gluten Free Bakery       Angela and Kimi of annaB’s Gluten Free

Susan Feller of 3 Flellers Gormet Gluten Free

We will also be introducing the NEWEST- GF Baker  Jessica Loura of just opening the doors, Indulge GF Bakery.  Jess is donating a bakery gift as a door prize.  There will be Restaurant and vendor door prizes too!”

Gluten Intolerance Group of Charlottesville is hosting

 5 Gluten Free Bakeries for an evening of tantalizing tastings!

Where: Hollymead Elementary School

2775 Powell Creek Drive, Charlottesville

When: April 18th at 7:00 P.M.

Come Taste bakery offerings from

3Fellers Bakery, anna B’s Gluten Free, Baker’s Box,

Mixing It Up Gluten Free Baking LLC,

and Stevie G’s Gluten Free Bakery

Calendar of Events:

April 18th 1st GIG meeting in Charlottesville!

June 2nd Car Pool or Van/ Bus up to DC Gluten Free Expo http://www.dcglutenfreeexpo.com/

June 22 GF Chili Cook Off

Summer Picnic TBD

September 19th Keeping Kids GF: A Professional Panel Discussion

October 31st GF Halloween Party

November 14th “What to do when you get dosed”

     aka: Surviving the Holidays: A Professional Panel Discussion

December 12th GF Holiday Party and Cookie Exchange

January 16th Gluten Free Affordably: Save Time and Money

February 13th Valentine Party

“Gluten Confusion”: The Media Gets It Right!

The dissemination of well-researched information is a wonderful thing for everyone! Check out this short but accurate video.

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