Thursday, February 7, 2013

The many reasons for gluten free - Official Diagnosis or not

Above is a bit of paper I pulled together with some things that stood out to me as issues you commonly find alongside Celiac Disease.

If your first time hearing about Celiac Disease was from television or a movie, I'm sure you think that all Celiacs are "weirdos" or massively ill. I'd like to try and clear up some of these misconceptions, if I can.

One of your best resources for Celiac information will of course be your National Celiac Associations - not always can you trust your local or national media outlets. You almost never can fully trust the information contained in movies and television series about Celiac.   You can however, glean some interesting information from the national and local media outlets that you can follow back to their sources and find valid information behind. Sometimes, you can find reliable information from dietician's associations as well.(This would be a great start, for example: Nutrition Issues in Gastrointerology, Issue #16; Going Gluten Free: A Primer for Clinicians [PDF])

Truth be told, there are well over 300 different symptoms associated with Celiac Disease. This is why it typically will take someone 7-10 years to get an official diagnosis of Celiac, if they ever get a diagnosis at all. A lot of people give up, simply because their doctors are not taking them seriously.

Yes, there are severe cases, such as what was covered by recent news articles. (The Gluten Made Her Do It) I'm actually one of the severe cases, as are several members of my family.  I might go into that at some other time, but I won't on this post. I don't want to scare you unnecessarily.  What the news article describes though, is NOT out of the ordinary for certain parts of the Celiac community - so don't think it's über rare either.

To someone that is a beginner, I do think that this news article covers things accurately:
To avoid common beginners' mistakes, here are my three top tips on how NOT to go gluten-free.
1. Do not eat lots of food labeled "gluten free."... "Gluten-free" doesn't mean healthy.
2. Do not make "reasonable" assumptions at restaurants. ... It's better to be safe than sorry, so be your own advocate, and always ask your server.
3. Do not do gluten-lite versus gluten-free. It takes up to two weeks for gluten to leave your system, so if you're indulging once a week, you'll never get the benefits of removing it from your diet. Moreover, recent research shows that even a small amount of gluten negatively impacts inflammatory markers for six months.
Going gluten-free? 3 things you shouldn't do
See also: Go Gluten Free in 8 Easy Steps

Another thing to keep in mind if you have been gluten free for several months and not seen improvement, is that you could have an (or many) additional food intolerance or you may be having some cross-reactivity issues. Also, you may be having issues remaining completely gluten free. Before you say that you have seen no benefit of "going gluten free", do be sure to seek out your doctor's advice and get blood testing done. Even if you do not pop positive for Celiac (there is a high false negative result on the blood tests), you can find out what your base levels are and test yourself against that after three months of being gluten free and see if there has been any improvement at all.

Not all Celiacs have obvious symptoms. Many Celiac patients have latent or silent Celiac Disease and show now obvious outwards signs of Celiac. (article) Please keep this in mind if you are going gluten free but have not undergone testing. This is why testing is so very important.

If I could say just four things about going gluten free due to Celiac, Chron's, IBS, Dermatitis Herpetiformis, or whatever other reasons you have linked to CD - I would say:
  • You cannot be "gluten light" and fully heal your gut. You MUST be truly gluten free.  This means removing all obvious and hidden gluten. This involves a learning curve that ranges between 3-12 months, and a lot of label reading. 
    You can find a list of safe ingredients here, and non-safe ingredients in food here.
  • You will have to learn how to shop for real, whole foods.
    This will mean shopping around the perimeter of the store in an oval (egg-like) or C-type shape. This will place you outside of the main areas of processed foods and expose you to the areas with fresh produce, drinks, frozen and preserved items, spices and back out to the exit.
  • You will eventually bake and cook with real, whole foods and gluten free grains. (unless you go Paleo/Primal, SCD or GAPS Diet)
    This requires a learning curve, and gluten free flour does not behave at all like gluten containing flours. You will not be able to substitute cup-for-cup on many recipes, especially if they require gluten in the grain + yeast to work. However, there are options out there that work nicely once your gut begins to heal and your tastes change. Have patience and take everything one day at a time
  •  Give yourself time to adjust.
    You will likely go through several, if not all of the stages of grief, as our cultures and most of society revolves around food. Do not be shocked if your friends and family become complete jerks because you cannot/will not be eating from their kitchen any longer, because they cannot cook or bake for you.  Just let it roll of your back, and start learning how to make and bring your own food for yourself and your family. If you are in a big "food" community, know that you will be doing assorted festive meals for your own family or be serving from your food items constantly so as not to allow others to cross contaminate your baking supplies or food.

I would recommend this article if you are considering going gluten free and haven't been officially diagnosed. If you are looking for gluten free magazines, you can find a good listing of the current ones here. (which doesn't include Clean Eating Magazine) There are also a good many gluten free forums, and a helpful list has been compiled here.

If you are worried about work or school functions, there are work-arounds for those of us with food intolerance and Celiac Disease.  The Americans with Disabilities Acts,  information on IEP and 504 plans may be helpful to you. (See this article.) If you wish to go to a social function and food will not/cannot be provided for you, the company hosting the social event is obligated to allow you to bring in food that you may eat. It may require that you look into your local and state laws and print up information about the ADA prior to your visit to the local state park, your next sporting event or trip to a large theme park. Please, whatever you do, be respectful with the people in authority and send them all the information that you can (including a doctor's note) and refer them to reputable Celiac Associations* when faxing or emailing them information. One bad experience with someone who has Celiac Disease really can factor into how they deal with individual Celiacs in the future.

The good thing about going gluten free is - the diet is what you make of it. So, if you have a sour attitude and a can't-do feeling about the whole deal, it will be an unworkable, unmovable, unattainable situation for you.

If however, you have an open mind, the world is yours and it will be exactly how you want it to be. There are gluten free gourmets out there. NOTHING is impossible!!

For us, Gluten free at this phase of life will be less grains and mostly GAPS Diet. This means, less processed foods, less flour and more food preparation. During lunch, the children will have as high of a GAPS diet as I can make without there being complaints that I am not meeting the catered food requirements (matching what is catered), and enough that the kids will eat what is prepared.  For us adults, this means more GAPS than ever, but still baby-stepping it.

I would suggest though, that if you have recently gotten a diagnosis of Celiac Disease, that you go ahead and at least go through your pantry and donate everything you know is obviously gluten to your local food pantry, and that you make these changes to your kitchen IMMEDIATELY:
Replace toaster/toaster oven, waffle iron, etc. Never use the same products that gluten products have been used in.
Replace all cutting boards. Old boards may be kept separate for use with gluten foods.
. Replace wooden or teflon cooking utensils. Old untensils may be kept separate for use with gluten foods.
Replace porous pots/pans/skillets. Teflon and cast iron are porous and retain gluten from past cooking.
Replace pans with seams. Past gluten products can easily be retained in the seam.
Never wash gluten and gluten free dishes in the same dish water.
Use disposable rags/sponges if your kitchen is not totally gluten free.
Many issues one forgets to look at:
can openers
pets (food, licking, pet care products)
stamp hinges (for collectors)
Personal Care Products
Very important: silver drawer: there are always crumbs there.
. shared tables/microwaves, kitchens - like at work.
Remember to wash your hands before eating finger food. There are so many potential contaminants in the house, especially for those of us with pets or kids, that you might not even realize you've touched something that's potentially dangerous.
bulk bins at the grocery: it has one of the most cross-contaminated areas.
At school
the conveyor belts at the checkout counters in supermarkets: for ex.: leaking flour bags, etc…
--Originally from Delphi Forums by way of Celiac Forums--
See also:
A Celiac is Coming to Dinner
Cooking gluten free for family or friends? Read this first!
Gluten Free Diet Boot Camp (invaluable information and regularly updated)
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
NFCA Celiac Resources
Hidden sources of gluten and cross-contamination

If you have been gluten free for a while, and are not seeing improvement on a gluten free diet; it may be time to consider other food intolerance or whether or not you are experiencing Gluten Cross-Reactivity issues.

"A recent study evaluated the potential cross-reactivity of 24 food antigens.  These included:
  • Rye
  • Barley
  • Spelt
  • Polish Wheat
  • Oats (2 different cultivars)
  • Buckwheat
  • Sorghum
  • Millet
  • Amaranth
  • Quinoa
  • Corn
  • Rice
  • Potato
  • Hemp
  • Teff
  • Soy
  • Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk)
  • Chocolate
  • Yeast
  • Coffee (instant, latte, espresso, imported)
  • Sesame
  • Tapioca (a.k.a. cassava or yucca)
  • Eggs
They did not find cross-reactivity with all of these foods (as is implied by the Cyrex Labs gluten cross-reactivity blood test, a.k.a. Array 4).  But, they did find that their anti-gliadin antibodies (antibodies that recognize the protein fraction of gluten) did cross-react with all dairy including whole milk and isolated dairy proteins (casein, casomorphin, butyrophilin, and whey)—this may explain the high frequency of dairy sensitivities in celiac patients—oats, brewer/baker’s yeast, instant coffee (but not fresh coffee), milk chocolate (attributable to the dairy proteins in chocolate), sorghum, millet, corn, rice and potato." Gluten Cross-Reactivity UPDATE: How your body can still think you’re eating gluten even after giving it up.

There are currently several books out by American Nutritionists and Dieticians that I have heard are quite helpful. I'm currently in the process of trying to procure them here in Germany. The titles are: Real Life with Celiac Disease, Celiac Disease Nutrition Guide, Second Edition and Gluten-Free Diet: A Comprehensive Resource Guide. I have also heard good things about Celiac Disease: A Hidden Epidemic; Wheat Belly: Lose the Wheat, Lose the Weight, and Find Your Path Back to Health  and The Gluten Syndrome: is Wheat Causing You Harm?

 My mother and sister had gone to a local Celiac Food Vendor Fair, and sent me a copy of Columbia University Medical Center's latest book, The Ultimate Guide to Gluten-Free Living and a nifty packet that came with that in 2009. You probably can find more information about the guide by contacting them here.

I was recently forwarded some more information that I did not have previously with some very reputable articles about Celiac Disease at Shelly Case's website, The Gluten Free Diet; Today's Dietician, on Celiac Disease, Real Life with Celiac Disease, The Celiac Disease Center at Columbia University, The Gluten Intolerance Group, and

If you need any assistance in going gluten free, you're more than welcome to contact me and I'll do my best to assist you.

If you need food inspiration and are not yet ready to dive right in to GAPS (which would be great to heal your gut, by the way!!), below are the links I have had saved over the last 6 years of living in Germany for Recipe inspiration. (note that some of these are now inactive, but the recipes are good!) -- her new blog: new blog: - new blog: new blog: (this is in German - great recipes, but you will need Google Translate and an understanding of German measurements. This is great for traditional recipes though.) Ask me if you need help. You can email me or leave a message in the comments and I'll see what I can do to help you.

 I hope and pray this helps you along in your Gluten Free Journey. Best wishes!

*Celiac associations in the United States:

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