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

Archive for the tag “Celiac”

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!

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).

Travel… oh boy

Let’s just start with this little fact: I bought baby food. Not for a baby. For me. While this might sound super depressing, I am LOOKING FORWARD to eating vegetables on the go that I didn’t have to peel, slice, and cook until soft (or puree) myself (as I do on most days). I was alarmed to see the fruitlessness of a Google search for “Celiac baby food” and “certified gluten-free baby food,” so I’ve got my fingers and villi crossed that cross-contamination won’t be a factor. Ingredients are typically “carrots, water,” so can’t go wrong there. So, why did I buy baby food? Well, when you’re traveling as a tourist with food restrictions, there really aren’t a whole lot of options for on-the-go meals. Most granola bars are out due to dried fruit and nuts. Can’t do raw vegetables. I will be floored if I can eat 25% of the gluten-free meal on the plane (did you know that you can only place one dietary preference request on airplanes? So it’s either gluten-free or vegan, and with the utterly random list of foods I avoid I am keeping expectations low). However. Some fresh fruits can be purchased and peeled! I’m packing packets of sardines, salmon and tuna in water. Rice cakes, of course. Seaweed snacks made with olive oil. I’m getting used to eating steamed vegetables cold, but I’d rather do baby food than carry mushy cooked vegetables in my backpack while sight-seeing. I may even pack a loaf of gluten- (et al.) free bread and veggie latkes in my carry-on luggage to throw in the freezer for the week. I’m a bit paranoid about fixing food in a shared kitchen, so my spatula, cutting board, and colander get to cross the ocean blue, too. Packing Herbamare (lovely salt/seasoning blend) and a few other dried herbs/spice blends. I’ve asked my host to purchase foil, parchment paper, plastic wrap, and disinfecting wipes. Oh and I invested in some Gluten Defense digestive enzymes (BTW be very careful with digestive enzymes- lots have barley!), which I will take at every meal. A member of the Celiac ranks gave me some Alka Seltzer and charcoal tablets for relief in the case of glutening. Trying not to think of pots and pans… How to avoid making oneself sick by freaking out about getting sick?? I may eat out while overseas, which is a bit of an oddity since I categorically do not eat out on the home turf anymore. I found an exclusively paleo restaurant at my destination, so no gluten would even enter the premises; my only concerns are eggs/nuts/raw veg, but it seems like the appropriate place to ask for a plain slab of meat and a side of cooked spinach. There’s also a little chain that makes onigiri, or Japanese triangular rice packs stuffed in seaweed; they are certified gluten-free by the German equivalent of GIG. I believe I may be able to avoid other food allergens with this chain as well, as the ingredient lists seem very succinct and made up of whole foods. Traveling in Germany with Celiac Disease sans other food issues looks to be pretty doable, as many stores carry brands like Schar. I don’t mean to be all my-fate-is-so-much-worse-than-yours, so I’ve strapped on my big girl panties and… bought baby food. DO WHAT ONE’S GOTTA DO, AMIRIGHT?

Clarification: If you have Celiac Disease and plan to travel, you do NOT need to resort to eating baby food. I have intolerances to corn, soy, casein, eggs, nuts, tomatoes, beans, etc…. as well as major digestive issues with any food that is not soft.

One Grain More

Thank goodness my flops have been balanced with delectable successes! Alas, I couldn’t go for the finale food if I wanted to…

Traveling Celiac

Traveling with Celiac Disease restrictions is hard enough, particularly with checked bag fees and weight restrictions. Traveling with Celiac Disease and multiple food intolerances is… stressful. Although I’d stocked my checked bag with canned food, microwave rice bowls, juice boxes, applesauce containers, and Larabars, I definitely did not bring enough food.

I thought I’d planned a fail-proof trip. I booked a room with mini-fridge and microwave in a hotel that was supposedly close to a grocery store. But somehow I neglected to factor in the long conference hours, which made a grocery shopping trip impossible (as it turned out, Google maps was a little off on the proximity of a Publix). As a result, I ate out twice at restaurants close to the conference, and compromised, and rendered my insides such.

The first restaurant, Ted’s Montana Grill, has a gluten-free menu posted online. I had salmon with asparagus and broccoli, all of which was tasty. Although the waitstaff and kitchen honored my request (I assume) to exercise cross-contamination caution and to hold the butter and any other dairy, my insides coiled into a constellation of cramps etc. shortly after the meal. I just don’t have to the heart to go to a restaurant and ask for a meal free of my long list of known irritants. As a result, I eat out perhaps once a month, and only stick to gluten- and dairy-free abstinence.

The second restaurant, Dantanna’s, did not have a gluten-free menu online, but a reviewer on the Find Me Gluten Free app claimed that they did in fact have one on location. I called to confirm, and indeed they do. In fact, it’s quite extensive, with appetizers, burgers (on lettuce), entrees, sides and desserts. I heeded the reviewer’s recommendation and steered clear of the french fries listed as gluten-free but apparently containing gluten. The server seemed confused when I ordered a gluten-free burger with lettuce, no bun (the hostess had brought me the gf menu), and said he didn’t think it was safe for me to eat from their kitchen. Thankfully the manager came to our table, asked who was gluten-free, then asked if I had Celiac Disease. She then explained that their gluten-free menu is for individuals who have a slight gluten problem, not for people with Celiac Disease; however, she had notified the chef of my health issue and he had said he could make the dinner I had ordered. Full-blown GI warfare set in shortly thereafter, but again, it could have been any of the food groups I typically avoid in addition to gluten.

I’m not sure how I feel about the whole gluten-free-but-not-for-Celiacs menu deal. I realize how difficult it is to prepare a truly gluten-free meal in a shared kitchen. It’s hard enough for ME to prepare MYSELF a safe meal in a gluten-containing kitchen. On the other hand, what is up with this nonsense of advertising gluten-free products and menus that are not truly gluten-free? “Slightly gluten tainted” is more like it. Take the “-free” out if it does not apply! I don’t expect the layperson to understand that baking me cookies with gluten-free flours but without attention to cross-contamination is unacceptable to people with Celiac Disease. But for a restaurant, particularly with a trained chef, moreover advertizing a gluten-free menu, I do expect fact-checking and an effort to keep my dish separate and to use clean utensils/surfaces/etc. I wouldn’t go so far as to claim that I have a right to eat out. I know it’s a luxury to have someone else prepare my meal. In fact, I sorely miss eating free food at events, participating in potlucks, and sitting back without a care while a host prepares my meal. But, sorry, restaurant world, if you publicize a gluten-free menu, you will get Celiacs in addition to gluten-intolerants, and some of the latter will need complete and absolute freedom from gluten just as much as the former. I should have taken the time to go into these arguments with the manager, but, famished, fatigued and cowardly mess that I was, I meekly accepted a meal that was not intended for me and my kind. It was delicious on one end, but I certainly paid for it on the other. Note to self: BAD HABIT FORMATION.

Oh, and looked what aired tonight! Fox finds Celiac newsworthy!

And finally, on a lighter note, THANKSGIVING RECIPES! SO MANY FREE OF GLUTEN, DAIRY, EGGS, CORN, REFINED SUGAR, ADDITIVES. THANK YOU, FELLOW BLOGGERS! I have a repeat upper GI, a first-time lower GI, and biopsies the day before Thanksgiving, but I will get the recipes and and my reviews up at some point!

Narrowing the elimination pool, and CROCKPOTS ROCKPOTS!!!

Well, I have become more “regular” and less bloated on this elimination diet (1 week, 2 days), though I developed new symptoms of severe heartburn and rib pain. I was also noticing bits of carrot (though overcooked to prescribed mushiness) on the other end, so I’m 2 days carrot-free and feeling MUCH better. Food intolerance #2 (I guess it goes without saying that gluten is #1): identified. It is pretty hard to get up to 1200 calories on this diet, despite consuming a few cups of rice every day (so weird after being paleo!). The vegetables are getting ridiculously repetitive, so I think I’ll talk with my nutritionist about adding more of those in first cuz I love ’em! Overcooked, not so much…

I put both of my crock pots (one large, one small, makes/models pictured below) to work today, with pear sauce and butternut squash soup.

Pear sauce:

4 pears

small crock pot

Peel and core pears. Add 1 cup H2O, and set on low for 5-6 hours. Drain and throw in food processor once cooled. Measure out 1/2 a cup (a normal serving) to keep from eating all the goodness in one go!

Butternut squash soup (elimination version):

1 butternut squash

2 apples

3 cloves garlic

fresh tarragon & mint

ginger

cinnamon

2 cups homemade rice milk (1 cup cooked rice with 3-4 cups water in food processor yields 4 cups)

1 cup water

1 cup pumpkin

Peel, core, and slice as appropriate. Throw in crock pot for 6 hours. Cool and pulse in food processor.

Whole Foods of Charlottesville will hosting a gluten-free day (well, 4 hours, really) on Saturday, October 6. I would really like to go, even if I can’t eat the samples! Here’s a description from a Whole Foods nutrition specialist via the Charlottesvilli support group:

“I wanted to make you aware of our Gluten-free Day that we’ll be holding on Saturday, October 6th from 10am-2pm.  We will have a local vendor as well as demonstrations throughout the day sampling various foods that are gluten-free.  We will also have a speaker giving a presentation at 10am and 11am.  If you are interested in making a presentation, or having a table, we would love to have you or someone here representing your group. Regardless, I just wanted to extend the invitation to you and members of the group to come experience this event. ”

Still haven’t been to a support group meeting (they’ve just gotten back together after a hiatus), but the next one is October 20 and I plan to attend!

Elimination Games

So… it’s been a while, because I don’t have any exciting recipes to share. I went back to a nutritionist with my continuing problems, and she put me on the dreaded elimination diet.

White/jasmine rice
very lean/low fat chicken, white fish
potatoes
overcooked mashed vegetables: carrots, green beans, greens, pumpkin, squash with no seeds e.g butternut
applesauce
canned or very ripe mashed peeled fruit: peach, pear, melon
basil, oregano, parsley, cilantro, aromatic herbs
onion, garlic
milk substitute

Yeah, this is gonna get old in 2 weeks when I go back to see her (and, if I’m finally “balanced”, begin to add 1 food/consistency at a time per 48 hour period). She wanted me to eat some sort of gluten-free bread product as well, but I don’t see the point- most contain a food that she told me to avoid (egg, sugar, fat, grains other than rice). If I’m going to do this elimination diet, then I might as well do it right. I definitely feel funky after eating rice and canned fruit, but it could be because I haven’t eaten either of these in a long, long time. Trying to somehow dismiss the latest on arsenic in rice…  I think I’ll want to add back more variety in terms of veggies first. I am a bit paranoid that I won’t feel better after 2 weeks on this diet (what if one of the foods on the allowed list is not sitting well???), but trying to push through regardless. I’ve been making a sort of spin-off of pathiri for breakfast, but I make mine thicker to get a gooey inside. I read on several sites that it’s pretty darn easy to make rice milk from 1 cup cooked rice and 4 (or however many you prefer) cups of water in a food processor. I think fruit sauce in the crockpot is in order- fruit from a can is just nasty (even the kind in fruit juice/no added sugar, which is what I’m eating). I’m guessing spaghetti squash would be ok (easy to scoop out seeds and cook to a soft consistency), so that might jazz up my meal. If I get desperate, I may try out an apple “pie” sans lemon juice, plum, and cinnamon (maybe sub ginger).

If I don’t feel better on this plan, then it’s back to a gastroenterologist. If my weight doesn’t normalize (135 guh- my “norm” is 115-120, and I exercise 5-6 days a week and eat 1200-1500 calories per day) then it’s to an edocrinologist. I’m hoping that the reduction of fat (nuts, coconut products) will help. Even more than weight loss, I’d love to not feel uncomfortable while exercising. Of course I’m still tracking calories/protein/fat/carbs online, and supplementing with a potty journal (my bowels, let me tell you about them). The nutritionist strongly recommended counseling for a “socially unacceptable, chronic digestive health issue.” I was hesitant, because my problem is not general malaise or social inadquacy (though let me tell you, potty issues/restrictive diet/no alcohol/digestive exhaustion take a toll on overall mindset and social life), but the nutritionist assured me that she could refer me to someone who had some experience with this sort of thing. It would be a good outlet for ranting (in addition to this yer blarg) with minimal emotional involvement required from the listener. Celiac Disease is a weird thing to “get”, and I know I can’t expect friends/family to abosorb all of the information. Yeah, it’s not deadly, but it causes me grief on a daily basis. I just hope I can get to the point that all of the books end with, of being gluten-free and feeling great.

Dark side of the food

After a 2 week run of recording everything I eat and portion sizes, while trying to stick to a 1600 calorie diet broken down by food groups, I owe it to myself to document the fact that I have failed. And I’m not talking a day of free-for-all binging. I’m talking a string of days when I go against my diet plan for some inexplicable reason. I MUST eat all of the frozen bananas, even if that means eating 5 or 6 bananas total. I MUST eat all of the almond butter, even if this means consuming over 1 cup (daily allotted amount of nuts would specify 6 teaspoons). Ok, so I haven’t failed completely: I am still not eating any packaged snacks, desserts, or non-whole foods (e.g. I eat quinoa or nuts from a package, but these are whole foods). And I really should applaud myself this last (and lasting!) achievement. I just can’t get portions right. Those avocado muffins I made? Ate 10 of them in 3 days (one day I ate 5 at a time). It felt like I could not stop, much as I tried). It may be because I feel like one of those sideways people in the probiotic ads EVERY. DAMN.DAY. And I can’t feel hunger, unless it is extreme, in which case I eat half a tub of almond butter. While this may not interest anyone, I need to put this out in public, because it is disgusting me, and I can’t bring myself to be honest in my food diary because it is TOO.DAMN.GROSS. I exercise 6 or 7 days a week, an hour a day, but I know all too well that exercise won’t compensate for a yo-yo meal plan. Hypothyroidism does co-occur with Celiac Disease, which could explain the weight gain. Or it could just be inflammation. Whatever it is, it is very discouraging and, I suppose, prompts me to gorge myself when I see no results from exercise and a good string of healthy, balanced diet days. It’s also perplexing to think that a 5 banana binge would hardly be considered shameful by an average individual. Eating 5 slices of pizza or 5 cups of buttery popcorn or 5 bags of potato chips would seem much worse, yet here I am, binging on the healthy foods I can actually eat (food intolerance has really narrowed this down) and gaining weight. I want to scream FML and be done with it, or at least go to a counselor, but the slew of doctors I’ve seen had no suggestions. They didn’t seem to get how difficult it is. Yeah, I’m not dying, I’m not in pain, so what can they do for me? But I am a walking tub of bloat (I’ve cut out all “bloat-inducing” foods for weeks, no dice), alternating between free flowing bowels and clogged pipes I wish someone would devise a snake for (natural & medicinal laxatives and fiber have no effect). I am to the point where seeing an athletic, trim girl run 1/3 of the distance I run makes me want to cry (I have lost my muscle tone and have gained flab everywhere. Why? Ask the Celiac gods. Which don’t exist), trying not to fart my whole way through 4-5 miles. And then there’s the whole “gluten-free weight loss” crock of frying shit. I don’t eat the gluten-free bread, pasta, cookies, crackers, cake, pre-made sauce. I eat (when not binging) lean meat, fish, vegetables (most of my diet), fruits, nuts, coconut products, quinoa, gluten-free oats, healthy oils, and beans (though not handling them very well, despite insistence of nutritionist). I take a probiotic. I don’t skip meals. I DON’T EAT REFINED SUGAR. And still I am gaining weight. So please tell me how switching your wheat bread for gluten-free bread is going to make you lose weight. Apparently I’m not alone in receiving idiotic (perhaps well-intentioned? nah, maybe on a day when I’m in a better mood) comments about people wishing they had Celiac Disease. Celebrities are no help, either (but really, are they helpful in any other facet?) Erm, I wish I had an autoimmune disease that compromises my entire body/health/state of mind, makes me prone to other autoimmune diseases for life, renders me bedridden from consuming a fraction of an accidental crumb of wheat/barley/rye,  lands me watching other people eat things I can’t if I want a social/family life, brings with it a few handfuls of food intolerance (cheese, my long lost love), leaves me paranoid to eat out or to eat anything that any other person has made without my 100% supervision, and makes me hate my life and the world around me when I get worked up to a silly irrational mess (ahem, today and now). It takes a while for this much negative emotion to stew before a spill, so really, on the whole I suppose I’m ok. A rant was needed, and it was had.

Carbs

I’m about a week in on the return to grains. Let’s just say that there is visual proof that I’m not digesting them fully. I’m sure that paleos would jump down my throat at having let myself be swayed by a mainstream medical professional, but it certainly does seem that there is benefit to eating carbs, particularly due to my low glucose levels. I’m also considering trying lentils for fiber & protein. That said, I’m removing dairy a bit more staunchly, even the lactose-free products, just to see if I feel any better. Even lactose-free cheese immediately makes me feel bloaty, so casein (milk protein) may be the true culprit. I purchased a better-quality probiotic (including acidophilus and bifidobacterium) today, as my Costco probiotic with much fewer strains may not be cutting it.

While I wouldn’t go back to my thinner pre-diagnosis, miserable self, weight gain has really got me down (doesn’t help that I literally feel weighed down by bloating). This quote from a Celiac Disease message board on the topic of weight gain made me a bit more optimistic: “I think the most important thing your body needs is time to heal. Gluten has done a lot of damage and your body is probably still in “starvation mode”, which could explain it trying to hold onto everything you eat. It sucks right now, but trust me, it WILL get better with time. Hang in there:)”

In addition to my quick-n-dirty frozen banana “ice cream” I’ve also started frying plantains in a smidgen of ghee (no lactose or casein!) with a dash of cinnamon and a tablespoon or two of coconut milk. If you are patient enough to wait until the plantains are nice and black, man are they tasty! 1 plantain is a day’s worth of starch (so try not to eat any acorn squash, butternut squash, pumpkin, beets, corn, green peas, snow peas, sweet potato, regular potato, turnip or parsnip on the same day). They are much easier to get our of the peel if you cut them lengthwise and pop each half out of the peel.

Everything from scratch

So! I am having some friends over to my place this Saturday, and, due to my variety of food issues (still following paleo & FODMAPs diets), I am preparing most of the food. What a great opportunity to try out a handful of new recipes (and annoy the shirt our of my neighbors with my noisy food processor…)! Here are some of recipes I’ve made so far:

Coconut squares

I replaced the honey with maple syrup (slightly less), and they came out really moist! A bit too sweet for me, but I’m trying to include close to the called-for amount as some who have eaten my paleo sweets say they aren’t sweet enough (I think I’m super-sensitive to sugar since I don’t eat much at all. Just check the labels of your sauces to see how much you are in fact consuming).

Spinach and avocado dip

My cheapo food processor wasn’t too pleased with the spinach at first, so I just kept pulsing, then scraping the contents up from the blades, and pulsing again. I used chives instead of garlic (a FODMAPs “avoid”), and it came out pretty tasty! Avocado is on some “caution” and “avoid” lists for FODMAPs, but it was only one to a large amount of spinach, and sometimes I just want to eat what I want to eat. And hope my digestive enzyme supplement kicks in.

Almond butter brownies

Again, subbed maple syrup for honey. The stickiness of the batter sort of clogged my cheap hand mixer, but everything mixed together nicely by hand. I added a little bit of crumbled Hershey’s unsweetened baking bar (delighted to find unsweetened chocolate at Martin’s!) instead of the chocolate chips (I love what Enjoy Life is trying to accomplish with their products free from the top 8 allergens produced in dedicated facilities, but their chocolate chips are loaded with sugar, and I can’t eat most of their products comfortably). Haven’t tried them, but they smell pretty darn good!

Sweet potato hummus

In the process of making this recipe, I rediscovered how good sweet potatoes are straight out of the oven! Maybe their delectable nature was accented by my severely reduced sugar intake (I’ve noticed that fruits & vegetables taste much more flavorful to me now). Good thing I made two, so I had enough for the dip! Again, I had to substitute for garlic, so I added some cumin and threw in some cinnamon on a whim. NOM!

Spicy pineapple sauce

I made this sauce to accompany shrimp. AGAIN, I modified a bit. I used red pepper flakes instead of the roasted peppers and a bit of paprika. I used a whole, fresh pineapple as canned fruit is on the FODMAPs “avoid” list. Wow, what a great mix of sweet and spicy! I think it will be great with un-breaded, chilled shrimp!

Paleo mayo

I used apple cider vinegar instead of white wine. I used 1/2 EVOO, 1/2 coconut oil. Mine did not get as thick as pictured, despite very slow drizzling of oil and vigorous whisking. It’s sitting in the fridge, so we’ll see if it stiffens up at all. It’s not a huge deal if it doesn’t, I’ll just use less. I made this specifically to use in a chicken salad recipe (I’ll sub cucumber and fresh dill for the dill pickles. Man, the ingredients in store-bought, canned pickles…).

UPDATE: the mayo did in fact firm up in the fridge, to the point of a solid state, but it mixed in fairly well with the other ingredients.

Well, those are the most exciting things I’ll be presenting to guests, as well as some deviled eggs (basically dry mustard and lactose-free yogurt mixed in with the yolks).

Yeah for home cooking!

UPDATE: I also made some crackers (can’t find the exact recipe link…) from walnut & almond meal (ground in my food processor), coconut oil, chives, coconut flour, and salt, blended then rolled thin between two sheets of parchment paper (with a wine bottle, no rolling pin in my kitchen) and baked for 15 minutes (cut into more-or-less squares 10 minutes in). Pretty tasty! And nice to know exactly what I’m eating! It will be interesting to see how everyone responds to the foods I’ve prepared; it’s been a while since I abandoned the “regular” versions of some of the foods, so I think my tolerance for substitutes is much higher- hope they like at least some of it! And if not, I will happily eat leftovers.

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