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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Gluten Free Goodness

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Before you go off gluten, you need proper celiac testing. Celiac testing only works on a full gluten diet. (Four slices of bread a day worth of gluten.) If gluten turns out to be your problem, you won't want to re-poison yourself for two months to find out if you have celiac disease.

Tests you need:
Total IgA
deamidated gliadin (also called gliadin peptide) IgA and IgG
If the total IgA comes back deficient you need TTG IgG.

Your normal doctor can order this. It's called a celiac panel.

To answer your question for after the testing, shop the outside of the grocery store on your first couple trips. Veggies, fruits, potatoes and sweet potatoes, plain raw meat and seafood, eggs, natural dairy (cheese, butter, milk), and plain nuts are all naturally gluten-free and there is no confusing label reading necessary. You can venture to the processed food aisles to pick up some dried beans or plain canned beans and rice. For seasoning, single spices and herbs are fine, but many seasoning mixes contain gluten. Onions and garlic are good. :)

For your first dinner, make a roasted chicken, baked potatoes, and your favorite veggie with butter. Bake an extra potato so you can make home fries with eggs in the morning. Leftover chicken and a salad for lunch (olive oil and balsamic vinegar dressing) and you're off and running. gluten-free. It's that simple.

For more meal ideas check our breakfast and dinner threads.

Leave the rest of the processed food alone on your first couple trips, until you start learning to read labels. If you want to get into the label-reading here are food lists.
Safe: http://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html
Unsafe: http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html

Source: [url=http://www.celiac.com/gluten-free/topic/94529-list-of-gluten-free-grocery-items/page__view__findpost__p__807675]List Of Gluten Free Grocery Items?[/url]

Pot Roast Recipe

My pot roast:

I don't like adding a bunch of liquid so I choose a crockpot where the meat fits snugly. I usually use my 3-quart crockpot because I try to get a smallish chuck roast. Brown the meat in a skillet if you have time. Put the roast in the crockpot and pour in a little red wine so it comes to the top of the roast. If the roast fits snugly in the crockpot this will not be more than 1/2 cup. Salt and pepper to taste. Sprinkle on 1/2t dried savory and two cloves of minced garlic. On top of that, layer a package of sliced mushrooms and a small sliced onion. They will be high and dry but don't worry - the onions and mushrooms will eventually cook down onto the roast and flavor it. Turn on the crockpot, 4-5h on high or 8h on low. If you want to thicken the juices, stir in a tsp of arrowroot starch dissolved in a little cold water an hour before serving. Enjoy!

Source: [url=http://www.celiac.com/gluten-free/topic/89096-best-pot-roast-recipes/page__view__findpost__p__767194]Best Pot Roast Recipes?[/url]

Ingredient Labeling

This is Peter's fabulous explanation of reading labels for new members.

[quote name='psawyer' date='08 December 2011 - 05:55 PM' timestamp='1323395756' post='755048']
Welcome to the board, and welcome to the process of learning to read labels.

The Milky Way bar contains gluten (barley malt), and is not safe for us.

Gluten, defined in terms of celiac disease, is a protein found in three grains: wheat, rye and barley. Oats are generally contaminated with wheat, and a minority of us also react to pure oats.

The list of top allergens that must be disclosed includes wheat, but not the other three.

"Contains" and "May Contain" are different animals, too.

In the US, if a top-eight allergen is present, it must be listed by its common name, EITHER in the ingredients list OR in a contains statement. Only allergens may be listed in the contains statement. The eight allergens under the federal Food Allergen Labeling and Consumer Protection Act (FALCPA) are: wheat, soy, milk, peanuts, eggs, tree nuts, fish, and crustacean shellfish. Since barley and rye are not on that list, they will never appear in a "contains" statement. (In Canada, the list also includes sulfites and sesame seeds.)

If there is a "contains" statement, it must list every allergen present. But, again, barley and rye are NOT "allergens" as defined by the label regulations.

In this example, barley was listed in the ingredients by name. As someone new to this, I understand your confusion. But the label is not misleading, and conforms to the rules. You can not rely solely on the "Contains" statement to identify gluten. You'll know about wheat, but not barley or rye.

Rye is not something you need to worry about. It is in very few foods, and those are confined to selected baked goods where you would expect it, like rye bread and pumpernickel. In my experience, it is always clearly listed on the label.

"May contain" means that the ingredient is not intentionally present, but despite Good Manufacturing Practices and other precautions, it is not possible to be sure that trace contamination does not occur. Like the previous discussion, only ingredients legally described as allergens will be listed.

And, last, [url="http://www.glutenfreeindy.com/foodlists/index.htm"]a list of companies that has a clear gluten policy.[/url] If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." This makes shopping MUCH easier.

Edit: Three other posts were made while I was composing this.

Source: [url=http://www.celiac.com/gluten-free/topic/87860-could-the-milky-way-ingredients-have-been-misleading/page__view__findpost__p__755048]Could The Milky Way Ingredients Have Been Misleading?[/url]
GAPS diet is a version of the Specific Carboyhdrate Diet that's got extra probiotics and a lot of gelatin-rich bone broth. It is designed to heal the intestine and hopefully repopulate it with healthier bacteria. http://gapsdiet.com

For the TH1 vs TH2 branches of the immune system, here are a few links. It's not simple and the articles explain it better than I will. The idea is that the immune system gets out of balance, but it can be different in different people. Herbs that work for a TH1 person will make a TH2 person sicker.


This is the problem with stimulating the wrong side of the immune system. http://www.precisionnutrition.com/rr-green-tea-hazards

Source: [url=http://www.celiac.com/gluten-free/topic/87211-sluggish-gallbladderliver-herbs-and-salicylategluten-sensitivity/page__view__findpost__p__749154]Sluggish Gallbladder/liver: Herbs And Salicylate/gluten Sensitivity[/url]

Celiac Remission

When I saw Marku Makki talk, he spoke about desensitization and spontaneous remission in some celiacs. He has seen it in his decades of practice. It's in one of his articles but I can't seem to turn it up. I did find some other stuff for you. I don't know whether the Gut links will work for you because I have an academic affiliation that allows me to see research articles but I copied the conclusions.


This is the best article I can find. It is a retrospective study on 70 people diagnosed with celiac in childhood.

"In conclusion, this study indicates that up to 10% of celiac disease patients diagnosed in childhood can spontaneously recover a normal villous architecture after a long period of normal diet without retaining any clinical or biological sequelae of celiac disease. The persistence of immunological stigmata of celiac disease and the risk of relapse indicate, however, that this remission state must not be considered as a definitive recovery but as a return to latency that requires a regular follow-up. Most of the patients with celiac disease diagnosed in childhood who resumed a normal diet, however, have an active celiac disease at adulthood, even in the absence of symptoms. These patients should be screened for the presence of villous atrophy and osteopenia, and should be advised to return to a GFD in the case of persisting villous atrophy."

A case study.

"If the initial diagnosis was correct this represents a previously unrecognised course of childhood coeliac disease with either cure or prolonged latency (during which a normal diet may be tolerated). This has major implications to the individual, their families and to the provision of health care resources, particularly in the context of the increased prevalence of coeliac disease. The key questions that arise are whether lifelong gluten exclusion is necessary in childhood coeliac disease and whether gluten exclusion in children with coeliac disease has the potential to promote a period of prolonged latency or remission? In the context of the exponential increase in diagnosis and advent of screening further study of the natural history (including the potential impact of gluten challenge) and revision of the diagnostic criteria are indicated. We must ensure that patients are fully informed about uncertainty and that we do not over-diagnose or over-treat a condition that may not be lifelong and may, in a number of children, have the potential to enter a prolonged remission."

Remission in DH
Reuters summary of the research and interview with Stephen Katz at NIH

Source: [url=http://www.celiac.com/gluten-free/topic/85651-transient-celiac-autoimmunity-in-a-adult/page__view__findpost__p__736328]Transient Celiac Autoimmunity In A Adult[/url]
The enzyme in all the so-called gluten pills is DPP-IV. It is NOT one of the enzymes in clinical trials and it will not detoxify gluten. It does not cleave internal di-prolines, which are what cause problems digesting gluten in the first place. DPP-IV only works on prolines at the ends of peptides. These companies are lying, using the FDA dietary supplement loopholes.

Most of the pills are enzyme mixes. Celiacs tend to have reduced pancreatic activity, so a lot of people find the "gluten defense" style pills help them feel better after a meal. This leads them to believe the pills are breaking down gluten. They're not helping with the gluten at all. What they're doing is adding some enzymes and if your pancreas isn't working well, you feel a little better.

Anyone who finds these pills helpful can save money with a less expensive digestive enzyme supplement. Once you've been gluten-free for a while and healed, your pancreas should crank out enough enzymes that you can stop using them.

Source: [url=http://www.celiac.com/gluten-free/topic/85385-tell-me-about-gluten-defense-pills/page__view__findpost__p__734087]Tell Me About "gluten Defense" Pills[/url]
I know 2-3 months sounds rough. That is why I've never gone back and challenged.

You got me curious. I'm linking abstracts for you, as they're publicly available but I checked full text for two of the papers as the challenge time length wasn't in the abstract.

Here is an article showing median time to relapse in children with gluten challenge with a low amount of gluten is 13 weeks.

This paper used three months with a standardized amount of gluten to challenge, mentioned in the text.

I checked this paper, and people on gluten challenge had eaten gluten from 1.5-4 months, with an average of three months eating about 3 slices of bread a day.

So, researchers are not challenging for only a month. It looks to me like three months is a more typical time to get a relapse. It's a shame your doctor has not gone to the trouble to read the literature make a better recommendation for you. You might ask your doctor about getting an anti-EMA or anti-deamidated gliadin peptide test run at this point. If either of those is positive you are almost certainly celiac.

Source: [url=http://www.celiac.com/gluten-free/topic/73880-symptoms-better-on-nexium/page__view__findpost__p__646277]Symptoms Better On Nexium?!?![/url]

Celaic And Oats

As far as oats, the scientific consensus is that while [u]most[/u] celiacs can eat uncontaminated oats safely, a few cannot. Across studies, some people have dropped out of oat studies because they felt unwell, and one had a biopsy-proven reaction. There are also immunological measures that suggest minor reactions in some people. What's recommended in the literature now is that celiacs eating oats be followed with blood tests to be sure they can tolerate them.

Here's a link to two abstracts of recent reviews.

Source: [url=http://www.celiac.com/gluten-free/topic/68562-just-diagnosed-today/page__view__findpost__p__608636]Just Diagnosed Today...[/url]

Blue Cheese

If you're ultra-sensitive, there is the blue cheese question too. Many blue cheeses are 100% naturally gluten free but some artisan cheeses have the mold culture started on bread. There is still no detectable gluten in the finished cheese so even the cheeses with cultures that were started on bread are safe for almost all of us. If you're unlucky enough to react to distilled alcohols or other grain-based products that also have no detectable gluten it's something to be aware of.

This is a fabulous article from the Canadian Celiac Society about blue cheese with the testing.

Source: [url=http://www.celiac.com/gluten-free/topic/83065-opinions-on-black-diamond-cheese/page__view__findpost__p__717146]Opinions On Black Diamond Cheese[/url]
[quote name='landslide' timestamp='1308945213' post='711619']
I see, very interesting! The innate immunity you're referring to, I suppose it's the same as Dr Fasano mentions in the link below? "Their immune reactions were different, too [compared to Celiacs]. In the gluten-sensitive group, the response came from innate immunity, a primitive system with which the body sets up barriers to repel invaders."
Yes, that's the study. The role of an innate IL-15 response as the first step in celiac is also pretty well documented. The model is gluten -> IL-15 through innate immunity -> interferon-gamma and NK cells -> inflammation and apoptosis of epithelial cells -> abnormal antigen presentation of gliadin by DQ2 or DQ8 -> anti-gliadin antibodies -> recruitment of CD8+ cells to the intestine to "kill" the gluten -> (insert uncertain mystery step) -> TTG antibodies -> celiac.

Thing is, it's looking more and more like just the IL-15 is enough to cause some folks a heap of trouble. Some research suggests that the loss of intestinal integrity is more a result of the innate immunity than autoimmunity.

Scratched teflon is bad news anyway. Sounds like it was time for nice, fresh pots. :)

Source: [url=http://www.celiac.com/gluten-free/topic/81978-low-testosterone-hypothyroid-and-adrenal-issues/page__view__findpost__p__711625]Low Testosterone, Hypothyroid And Adrenal Issues[/url]

Celiac Haiku

Bread, cookies, pie, cake.
Who would think they are poison?
Knowledge set me free.

Source: [url=http://www.celiac.com/gluten-free/topic/82375-celiac-haiku/page__view__findpost__p__711154]Celiac Haiku[/url]
This is a pretty good article that explains the December 2010 research on people with positive blood tTG or EMA blood tests and negative or Marsh 1 biopsy and its implications. Basically, because people with positive bloodwork and negative biopsy have the same metabolic markers as celiacs with full villous atrophy. The researchers recommend a gluten-free diet if you're positive on tTG or EMA, even if your biopsy is completely normal.

Here is the Pubmed link to the original abstract.

In the paper it explains the potential celiacs as: "Patients with potential celiac disease were all positive for anti-tissue transglutaminase antibodies (tTGA); all but one were also EmA positive; histological examination revealed an apparently normal mucosa (Marsh 0) in 9 subjects, just an increase in intraepithelial lymphocytes (Marsh 1) in 12 and increased intraepithelial lymphocytes coupled with crypt hyperplasia (Marsh 2) in 8 patients."

Fast Food

Big chains I know of are Wendy's and Burger King. Wendy's is celiac heaven because the chili is gluten-free so you can get a filling meal of chili and a baked potato. I'm not crazy about the taste of BK food, but you can get the chicken salad and usually the french fries are in a dedicated fryer. Boston Market is another chain where we can eat a lot of the food. I also go to Chipotle and In-N-out but I think those are local chains.

Do check those McDonald's salads carefully. It looks like they are in the middle of changing from a gluten-containing to a gluten-free chicken breast recipe.
http://nutrition.mcdonalds.com/nutritionexchange/ingredientslist.pdf I recently was at a McDonalds that had berry smoothies. I imagine they have a gazillion calories but it was a nice treat to find on the road.

I eat McDonald's fries without problems, though I know some celiacs are scared of them. They have a flavoring with a tiny bit of wheat in the oil early in the processing. Independent testing to shows the gluten doesn't make it through to the finished product. Some people steer clear anyway.

After getting a salad with visible crumbs in it, I do NOT eat at Subway.

Source: [url=http://www.celiac.com/gluten-free/topic/81928-eating-out/page__view__findpost__p__707182]Eating Out[/url]
I often get asked about Enterolab, as I don't hold their anti-gliadin stool testing in high regard.

Dr. Fine's story is pretty much on his website. He is a published expert on microscopic colitis. He started suspecting that in some patients the colitis was caused by an autoimmune celiac-like reaction. He was disappointed in the inaccurate serum tests so he developed highly sensitive stool tests. The discovery of gluten-caused microscopic colitis was a very nice piece of science.

The problem I have isn't with Enterolab isn't Dr. Fine's published work, but that he has never published anything on the the stool tests. When that happens, particularly in someone with a track record of publication, you have to wonder why they aren't publishing. Perhaps he wants to keep the methods proprietary but the other reason might be that he suspects the data he has collected so far won't pass a peer review. Also, most of his customers wouldn't read the paper anyway so it's not going to affect his revenue. He has a nice business going and only occasional scientist skeptics like me saying "hey, waitaminute..."

Enterolab runs the test with VERY low sensitivity levels. A staggering 60% of the people who approach Enterolab because they are feeling unwell have anti-gliadin in their stool, as do 29% of healthy volunteers. That means that half the folks with anti-gliadin IgA might be perfectly normal. There is research that IS peer-reviewed suggesting that stool anti-gliadin IgA can come and go as a normal part of immune function supporting this idea. Even serum anti-gliadin IgA can come and go. (That's why you want the newer celiac panel tests along with anti-gliadin.) The stool anti-TTG is a better test for celiac, but I haven't seen many people on the board come up with anti-TTG from Enterolab. One person who did have anti-TTG missed getting treated for Crohn's for over a year because Enterolab said she had celiac and didn't mention that she needed to see a doctor to rule out other GI disorders. Not cool.

Fine has his lecture slides posted at http://www.enterolab.com/Lecture/Lecturenew/frame.htm (works best with Internet Explorer). The data are interesting and worth a glance if you're curious. It is generous of him to post them for the public. The problem that shows up in his slides and the reason I don't recommend Enterolab testing is because the long-term outcome data show that fecal anti-gliadin IgA is actually a poor predictor of whether someone will feel better on the diet. In other words, [i]you get better information from trying the diet[/i].

Also notice from his data that plenty of people without the fecal IgA felt better gluten-free. The testing isn't a substitute for giving the gluten-free diet a good strict try.

The genetics are fine if you're happy with only the HLA-DQ beta subunit. Enterolab gets the genetic testing done at Red Cross in case you were curious. Unlike some services, which only tell you if you're DQ2 or DQ8, you will get the full results. It does not test for alpha subunit. The genetic test is not diagnostic but many people find it interesting.

Also if you desparately need a piece of paper to wave at somebody, and you're willing to spend a fair amount of money to get it, Enterolab is a good bet. You have a 98% chance of getting at least a gluten-sensitive gene and a 60% chance of getting fecal IgA. Not half bad compared to how hard it is to get a typical GP or GI doctor to admit you're gluten sensitive!
Shopping can be overwhelming so I always tell new celiacs to shop the outside of the store and stick to simple foods. Label-reading will take a little practice and research. It's easy to tell that a banana or a potato is gluten-free. I detour around the bakery section. I feel like an invisible cloud of gluten is hovering in the air. :P

I mostly live on fruit and veggies (fresh or frozen without sauces), potatoes, rice, beans, meat, nuts, and eggs to cook. I often grab some rice cakes, Missino corn tortillas, or plain corn chips. I'd suggest you skip the milk for now, as many new celiacs are lactose intolerant or have other digestive issues with dairy. If you find you can tolerate it, cheese is a great snack.

The ugly is that it's hard to find safe convenience foods, gluten-free specialty foods are horribly overpriced, and it's difficult to eat out. Gluten lurks in unexpected places and I've gotten sick at restaurants. I cook almost all my own food. The more I stick to whole, unprocessed foods that I know are 100% gluten-free, the better I feel.

In the kitchen I got a new cutting board for gluten-free food. I also got rid of my seasoned wok, as it had gluten-containing soy sauce in the seasoning. I got a new toaster and treated myself to a rice cooker too.

Best of luck to you!

Source: [url=http://www.celiac.com/gluten-free/topic/81725-celiac-diagnosed-just-today/page__view__findpost__p__705198]Celiac Diagnosed Just Today![/url]
1. You're going to get glutened occasionally no matter how careful you are. It's OK. Pick yourself up and keep going.

2. Don't worry about what others think. There will be people who say you are worrying too much about cross-contamination. You might meet celiacs or people who don't stick to the diet very well and say it's fine to cheat (it's not). You might have family members or friends who will try to guilt you into eating gluten-containing foods they have prepared. Be kind, be compassionate, say whatever it takes, but stand firm and don't poison yourself for someone else!

Source: [url=http://www.celiac.com/gluten-free/topic/81749-your-top-two-pieces-of-advice/page__view__findpost__p__705481]Your Top Two Pieces Of Advice[/url]

Recipe Sites!

Here are my favorite cooking blogs for gluten-free recipes.

Gluten-free crockpot recipes

Gluten-free Bay

Hey, that tastes good!


Tartelette - French Pastry with regular and gluten-free versions

Straight Into Bed Cakefree and Dried
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