Celiac/Gluten-Free Resources

Image from the Cover of Gluten-Free Girl by Shauna James Ahern

As many of you know, I have Celiac Disease (diagnosed 2005) and it seems that, lately, I'm fielding so many questions about CD or gluten intolerance I have finally decided that what I need to do is make a page here on the blog! I will include a variety of resources from what CD is, diagnostic work for CD, where you can buy food online, gluten-free blogs, gluten-free restaurant resources, apps for smart phones, reliable online sources of information and support and occasional articles I find. It's a work in progress. If you have any questions, feel free to ask them in Comments.

Part One: About Celiac Disease

What is Celiac (or Coeliac) Disease/Celiac Sprue?

The short answer: Celiac disease (CD) is a genetic autoimmune disease, i.e. a disorder in which the body's immune system attacks its own tissues, in response to eating a protein called gluten. 

The long answer: In Celiac disease (CD), your body reacts to prolamins, small proteins associated with grains, in an abnormal way. For example, in people with the genes associated with CD, the prolamin in wheat, gliadin, a gluten protein, causes an abnormal reaction in an enzyme called Tissue Transglutaminase (tTG), causing the enzyme alter the gluten protein thereby making it more immunogenic. This means the enzyme makes your body think that gluten is a foreign protein because it ends up attached to the tTG enzyme and the whole thing looks wrong. The gluten looks wrong and the enzyme looks wrong and so your immune system starts churning out antibodies, typically anti-tTG antibodies but also anti-gliadin antibodies and an anti-connective tissue antibody called anti-Endomysial (Anti-EM) antibodies. Anti-tTG antibodies are very bad things to have form in your small intestine- they are associated with all manner of problems including malabsorption, anemia, and other autoimmune conditions.  The damage in the small intestine results from T-cells attacking the intestinal lining with all the anti-tTG and anti-EM antibodies deposited on the surface of the organ. Other aspects of the science of the disease are still being uncovered. For instance, recently, it has been noted that anti-tTG antibodies also bind to a protein from a rotavirus. This implies that rotavirus infection may have some role in triggering the disease state.

About These Prolamins: What Are They and Where Are They?

Prolamins are small storage proteins that you find in grains, specifically the grains in the Triticeae family. The grains you're most interested in avoiding if you have CD or gluten-intolerance are: all Wheat, including: spelt, Eikhorn, Sanduri, durum, triticale, farro, orzo (gliadin and glutenin); Barley (hordein); Rye (secalin) and likely Oat (avenin). Some people also react to Corn (zein), Sorghum (kafirin) but this is far less common. Rice's storage protein, glutelin, is not associated with CD and gluten-problems and though a prolamin, is not water soluble and/or saline soluble, thus it is not absorbed well enough to cause CD problems in theory. It should be noted that some CD sufferers still cannot tolerate rice, however. My own mother can't and I'm currently on a Paleo diet with no grains and feel better. (This is a rare problem, however and many CD individuals do just fine with rice.)

How Common Is Celiac Disease Anyway?

At present, CD is thought to affect 1 in every 133 people, although recent studies have suggested that it is even more prevalent than that number, perhaps around 1 in every 100. One recent study found the prevalence to be 1 out of every 71 school-age children. CD is more prevalent than Crohn's Disease, Cystic Fibrosis and ulcerative colitis combined.

What Are the Symptoms of Celiac Disease?

Here's where it gets tricky. For many people... none, at least not until their small intestine is so damaged that the other sequelae of the disease wreak havoc on them. For other people, they are made seriously, and very obviously ill by the disease. Symptoms can include abdominal pain, bloating, extreme (and extremely unpleasant) flatulence, weight loss or gain (gain can be due to fluid retention and serious inflammation, as well as metabolic disregulation due to malnutrition) diarrhea or constipation (depending on phase of the disease), fatigue, malabsorption, malnutrition, dyspepsia, joint pain, red "rashes" associated with dermatitis herpetiformus, vitamin and mineral deficiencies. The latter deficiencies can lead to osteoporosis, nerve damage, mouth ulcers, loss of tooth enamel, liver, gall bladder and pancreatic problems and a variety of other lovelies. Untreated CD problems are also correlated with lymphoma, myeloma and colon cancer.

I can also note that especially in male children, CD is associated with short stature and growth failure. My own child had to have growth hormone for a year after diagnosis in order to get back on the normal growth curve. He'd fallen below 1% of the normal height for his age but is now on the 26%ile after four years gluten-free and one year of injectible HGH.

Diagnosis of Celiac Disease

There are three levels of invasiveness (with slightly analogous cost factors)

Most InvasiveThe gold standard for diagnosis of CD is a small intestinal biopsy that shows destruction of the intestinal villi due to the immune response. The biopsy is usually obtained during a combined colonoscopy and endoscopy procedure. Many people have issues both with the invasiveness and the cost. While it's worth it to determine that your problem really and truly is CD, there are less expensive alternatives (in the short term). 

Less Invasive: If your doctor wants to order blood work for you and you don't mind needles, blood tests detecting anti-tTG, anti-gliadin and anti-endomysial antibodies are diagnostic of active CD. (Endomysium is connective tissue that holds tissue-bound transglutaminase. By damaging the small intestine, you go through connective tissue- anti-endomysial antibodies are the gold-standard blood test indicator, since Anti-tTG can also be found in those suffering from diabetes type 1, and inflammatory bowel disease. Thus, anti-EM are considered clearly diagnostic of CD, while anti-tTG is an indicator of possible CD. Please note that by active CD, we mean that you are consuming gluten and your body is reacting to it. If you have been on a gluten-free diet, the antibody levels will fall to normal. Absence of anti-gliadin, anti-tTG or anti-EM does not mean that you do not have CD, and it does not mean your CD went away. It means that you are eating gluten-free.

Non-Invasive: If you have a history of CD or other immune diseases (thyroid, diabetes, rheumatoid arthritis, scleroderma, Sjogren's disease, multiple sclerosis, etc.) in your immediate family history, it might make sense to order simple genetic testing (buccal membrane swab is all it takes!) to see if you have the gene for CD. The two genes most strongly associated with CD are HLADQ2 and HLADQ8 (human leukocyte antigens.) If you don't have the gene, then it is very unlikely that you have CD, although there is still some chance that you might. If you do have one of the genes associated with CD, then you may have or develop CD. DNA Testing is available through Kimball Genetics. You can also perform stool testing to see if you have antibodies in your stool that are indicative of gluten problem- either solely gluten intolerance (only anti-gliadin, anti-glutenin found) or CD antibodies (anti-tissue transglutaminase). Stool testing through Enterolab is a bit pricier but they also offer a genetic testing combination that allows you to see if you have the gene(s) associated with CD or, alternatively, those known to be associated with gluten intolerance. The stool testing is also valuable because it may turn up anti-casein (a milk protein with a few structural similarities to the prolamine gliadin) antibodies, indicating that gluten-free, casein-free food might be a better bet for your intestinal health. The other reason to pin down which HLA-DQ group you have is that it is strongly correlated to various autoimmune diseases. It may reveal a potential alternate source for your health issues.

You Want to Skip All That And Just Try Gluten-Free

There's something to be said for just giving a gluten-free diet a chance, if you think you have CD or gluten intolerance. My youngest child, who is adopted, figured out that he had CD. After a summer of taking a morning writing class at school and eating three lovely gluten-free meals a day at home, he returned to school in late August and two weeks into 7th grade announced he had CD. Why? We asked him. Because, he said, now that he was back to eating stuff with gluten at school he felt sick all the time. (And this kid knew what had gluten in it because he was my little label reader, proudly reading everything he could get his hands on after working through his dyslexia). After another few weeks of insisting that he wanted to be tested and his choosing to go gluten-free on his own, lo and behold, his genetic testing yielded that he was DQ8 (just like me, and the rarer gene, to boot!) and stool testing indicated that he had a high active titer of anti-gliadin and anti-tTG. When his incredulous physician referred him to the equally incredulous gastroenterologist (how many kids do you know who figure out they have an autoimmune disease at age 12?) the GI guy wanted him to start eating gluten again so that he could get his gold-standard biopsy. To quote my snappy 12 year old: "Are you insane? It makes me sick! I'm a kid and I want to feel well. I'm not going to go back to eating that so that you can get some stupid test result that tells you I have what I already know I have!" To make a long story short, four years later we still have no biopsy but I have a healthier, more energetic, taller child. (See above note on growth failure and CD in children) It hasn't helped his ADHD, though. (Some people believe that children with ADHD are affected by gluten, but my child hasn't been.)

All that said, if you really have CD, you will have to be gluten-free forever. That's a tall order and serious business.

Eating gluten-free will be a challenge, especially when you initially start but, for the rest of your life, you will always have to be vigilant about contamination with gluten. If you really have CD you should be exposed to less than 10 parts per million of gluten protein (that's 10 micrograms) in a single day. A single breadcrumb can be enough to start up the immune cycle of gastrointestinal misery. Imagine that: a mere breadcrumb a day puts you right back in the range of untreated CD- with some very scary potential outcomes.

Part Two: Living Gluten-Free

The only way to treat CD is to eliminate all sources of gluten from your diet. It sounds simple, but it is not. Eating out can be a veritable nightmare, both because of hidden sources of gluten that are not known to you, to your chef or server, because of careless food preparation or because of people not understanding that you are not talking about some fad diet request. And eating at home requires careful reading of labels and knowing what you get. The less processed food you eat, the better. But what can people with CD eat?

What Can People With Celiac Disease Eat?

Let's start with the positive, right? There's a whole long list of stuff you can eat. For instance, check out Celiac.com's list. Notice that whole meats, fish, vegetables, etc are all gluten free- they don't have the pesky prolamins... unless you add them. And that's a point you need to be careful about. A surprising number of things have flour added to them. Saute├ęd chicken breast, just fine. Regular chicken parmesan, hey, that's breaded! Did they use gluten-free bread crumbs? Just fine. They didn't? Not fine. Hey, that's a delicious soup. Wait, did they use a thickener? They used arrowroot? Just fine. They used enriched flour? Not fine. And so it goes.... 

The list of what you can eat is long, and there are plenty of options nowadays for gluten free breads, gluten free baked desserts, etc. that are really quite tasty. If you have to find out you have CD, now is the time, not 20 years ago when there was hardly anything available here to assist you with eating a seemingly normal diet. Nevertheless, just remember- you are going to read labels and ask questions about what you eat like you never have before.

I mention being cautious about processed and prepared foods. You do still have some options. When it does come to prepared or processed food items, some vendors are simply a cut above others in letting you know that their food is Celiac safe. Applegate Farms is one of the best (especially since I am gluten-free/casein-free. I don't know where my child would be without their lunch meat/omelette addition.) They have unparalleled clarity of labeling on their products and a website that offers very, very clear information:

From Applegate's website:

Not all vendors are as clear. Some vendors are well intended but you have to watch for semantic confusion. Look at these Amy's Kitchen products:

Notice the lower right-hand corner of each product. Is No Gluten Added the same as Gluten Free? No, it is not. If it was, Amy's would happily tell you it was gluten free. If you're eating gluten-free as part of a fad diet, the first enchilada is just fine. But if you have CD and are supposed to keep below the 10 microgram per day exposure-level? I wouldn't try that first one...

The next big issue, if you're going to purchase a prepared food item is whether or not the labeled gluten-free item was manufactured in a gluten-free facility or whether it is produced on shared equipment used to process wheat, spelt, barley or other prolamin-containing grains. A great discussion of the dedicated gluten-free facility vs. shared equipment issue can be found on Wheat-Free.org's site. A lot comes down to: 1) what other things does this company manufacture? 2) How much prepared food are you consuming in a single day? If it's a fair amount, you are risking an exposure to gluten that may leave you with still active disease in your GI track. 3) How severe is your gluten sensitivity if you are merely intolerant and not CD? If you're like me, I've got a CD gene from my mother's family (HLA-DQ8) and a gluten-intolerance gene from my father's family (HLA-DQ7). I obviously avoid consuming it, but if there is contamination, I get really sick from gluten. Things that never even give my son pause will have me rolling in fetal position. I try, whenever possible, to buy dedicated gluten-free facility items, unless it's something produced in a fashion in which a wheat grain would never cross the product path line. Like Almond Milk, for instance.

There are a number of sites that can give you excellent information of substituting for gluten-containing items in your diet. Flours with other grains, soy sauce alternatives, whatever your needs, someone has figured something out. There's plenty of information and food out there that you can eat, and it is tasty food, too, thanks to the growing population of CD and gluten-free consumers.

What Are Hidden Sources of Gluten? How Do I Avoid Them?

There are a few surprises ahead if you are new to gluten-free. Take, for example, Soy Sauce. Would it surprise you to know that Soy Sauce is made with wheat not soy and that, instead, Tamari is made with soy? Or how about modified food starch? Was that modified wheat starch? Modified corn starch? Yeah, you're starting to get the picture. Here's a Celiac.com list of things you can't eat. The Celiac Society has a Food and Ingredient Search feature that lets you search items and yields a clear gray/red (no!) or green (okay!) response that you can see from a smart phone or tablet, though it is somewhat limited. (For instance the other day I typed in farro, a low-gluten pasta type item like orzo, also a no-no, and it didn't have it listed.) You may also wish to keep tabs on FDA recalls of foods that were supposed to be wheat allergen-free, which you can do at Wheat-Free.org or US Food Safety. But just remember there are other sources of gluten: wheat-free does not mean gluten-free.

GI Nurse Karen Hlywiak has a simply fabulous (and so clear!) article in Practical Gastroenterology that helps CD suffers avoid gluten. You can find that article here. The chart on page 31 of the article (don't freak out- the journal article starts on page 27!) is something you might want to print and keep.

Other hidden sources of gluten, are skin, hygiene products and cosmetics. You can't absorb gluten through your skin, but you can accidentally ingest it in lipstick or dental products. Hlywiak's article can give you guidance there, as can the Mayo Clinic page here.

And then there are some obvious but less obvious things. Have cats? I do. And I tried a cat litter called S'wheat Scoop. It's made, not surprisingly with wheat. No problem, I said. I'm not planning to eat it. But the dust, which I breathed in and which my cats tracked everywhere was a problem for me. I started having symptoms after pouring fresh and dusty litter into the boxes. I spent weeks getting rid of the dust. As Gluten-Free Homemaker points out, the only real issue here is inhaled gluten-containing dust getting swallowed. With six cats (I'm not kidding) we're talking a lot of dust...

Part Three: Gluten-Free Resources

Now that you're getting a feel for it, you might be heartened to know that there are a ton of resources for living and eating gluten free. Not least of which are blogs, apps, cookbooks and restaurants with dedicated gluten-free menus.

Celiac Foundations and Support

Celiac Disease Foundation

Celiac Central


Celiac Sprue Foundation

Celiac Society

Celiac Support Network

For those who travel, there are Celiac support networks all around the world. They can provide you with good information about traveling to new cities, gluten-free restaurants, grocery stores, and other resources for traveling safely. Just google Celiac and the city of interest, or state or country of interest, for rural areas. Asia, is, because of the soy sauce usage, a serious challenge for the traveler, however.

Gluten-Free Living Blogs

In no particular order, here are a few blogs that can get you started on living well, living gluten-free:

Gluten-Free Homemaker - also dairy-free! (Yay!)

Celiac Chicks - one of the best known blogs for CD living.

Gluten-Free Girl - another well known blog with recipes and CD advice.

Gluten-Free Goddess - Formerly Karina's Kitchen, cheatsheets and substitutions!

Elana's Pantry - a totally grain-free blog, now headed toward being Paleo*

A Gluten Free Day - I love Emilia's blog. She's in Finland and loves baking.

Celiacs in the House - A great resource for college-bound celiacs!

Gluten-Free Diva - some nice gluten-free and dairy-free recipes!

Gluten-Free Gobsmacked - a fun blog!

Book of Yum - a vegetarian gluten-free blog. 

FrannyCakes - MaryFran is a favorite gluten-free nerd!

Coming soon....

Gluten-Free apps for smart phones

Part Four: Beyond Gluten-Free

What If You Still Have Symptoms? Trying Casein-Free, Too.

Going All The Way: The Paleo Diet

Part Five: Articles of Interest

A big caution on the gluten-free bear front: BeerPulse, referencing this Journal of Proteome/American Chemical Society article.

© Bright Nepenthe, 2012

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