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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Steel Cut Oats And "gluten Free" Products
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15 posts in this topic

Recently I went to a new doctor and gave him a full history of symptoms. He suggested that I not eat gluten or products containing gluten. I was already eating a very low carb and low sugar diet. He told me not to worry so much about carbs and sugars but completely stay away from gluten. I got some steel cut oats and a few other gluten free products and started adding them to my diet. Has any one had issues with these products? If so, what type of reaction did you experience?

I started getting really bad gas. Also some of my itching came back. I get a few small painful itchy blisters on my arms. My rectum and surrounding area is itchy and red. I'm also still having problems with diarrhea and constipation.

I have an appt with a gastro doctor on Friday.

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Did you get gluten-free oats? Regular oats are cc'd with wheat. It's just a normal part of oats. Also, people new to the gluten-free diet are usually advised not to eat even the gluten-free oats until they have fully healed. About 10% of Celiacs react to oats like they do to gluten.

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Dairy and corn have also given me some grief. I am slowly reintroducing dairy (mostly GI symptoms originally) with some success. I have a strong suspicion that corn aggrevates my DH - temporarily and nothing like the long term effect of gluten. Both gluten and corn are on my avoid forever list.

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Be sure to read recent posts about eating low-iodine (avoiding dairy, egg yolk, iodised salt/sea salt etc etc) for DH control. You'll want to test your iodine reaction.

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If your going to get oats you have to make sure they are certified gluten free.

I react to even certified gltuen free oats and cross contamination from them just as bad as wheat, barley and rye. This eliminates even some gluten free products for me.

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Many celiacs can't tolerate soy. i am one of those. Soy does not affect my dh but I get gas & terrible bloat & belching.

Try low iodine --- see if your dh responds --- I bet it will.

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What brand of oats? Most are not gluten-free.

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Here's my two cents' worth--many people with celiac canNOT tolerate oats, regardless of whether they're gluten free or not. I knew of this intolerance by the age of nine without knowing I had celiac. Oats give me gas, cramps, and an overall sick feeling. The advice about eliminating or curtailing iodine is excellent--this will definitely help with the DH.

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My experience is that certified wheat free oats are no problem for me. A big plus in my diet. The problem is that they can be hard to find. Fortunately in my area of Canada there is a relatively low cost supplier.

I think that high quality regular oat products wouldn't cause most people too many problems because the grain cleaning process would keep the wheat contamination quite low. (I'm a former grain farmer). But personally I wouldn't take the risk.

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I think that high quality regular oat products wouldn't cause most people too many problems because the grain cleaning process would keep the wheat contamination quite low. (I'm a former grain farmer). But personally I wouldn't take the risk.

Low, yes. Safe for celiacs? Not even remotely. Tricia Thompson bought 12 cans of supermarket steel-cut and rolled oats. Out of her 12 random cans of oats across three brands, only three were < 20 ppm, and one tested as high as 1800 ppm gluten. http://www.nejm.org/doi/full/10.1056/NEJM200411043511924

The problem is that most farms grow both wheat and oats, and they crop rotate. Wheat volunteers in the oat fields and the plants and grains are too similar to separate. On top of that, you know how dusty grain trucks, silos, and elevators are. You may have kept things clean on your farm, but CC of seeds and grain, particularly flours, is a major problem for celiacs. To give you an idea of how pervasive the CC is in the grain industry, another study by Trica Thompson showed that many flours (and even a bag of whole millet) that should be naturally gluten-free contained unacceptable levels of gluten. http://www.ncbi.nlm.nih.gov/pubmed/20497786

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Thanks for all that good information Skylark, which I accept. As I said, I don't personally take the risk of eating oats not certified wheat free. Especially as they are cheap and readily available where I normally live.

On the other hand I had a email conversation with the products manager of a producer of oat products for the health food market who said that his products generally ranged in gluten content between 20ppm and 80 ppm. Obviously that wouldn't meet gluten free standards, but likely wouldn't cause major problems either.

Typical farming methods would ALWAYS cause a crosscontamination risk. Only scrupulous cleaning would reduce that risk, and how would anyone know how scrupulous the cleaner was? I assume that oats free of wheat gluten are grown on land where wheat isn't grown and cleaned in dedicated facilities. For example I know of a sod farming operation that uses oats as a rotation crop between grass crops.

It is alarming to read that samples of naturally 'gluten free' grains are sometimes contaminated to that extent.

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Glad you found the info useful. I tried Quaker oats before I knew about CC in oats and gradually got sick. I have no idea how much gluten CC was in that particular can. I don't think I'd do well on 80 ppm oats for an extended period though.

Yes, that Tricia Thompson study on grains was alarming. It made me wonder whether some companies are cleaning mills between batches of flour. I buy flours that are tested for gluten now.

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....

On the other hand I had a email conversation with the products manager of a producer of oat products for the health food market who said that his products generally ranged in gluten content between 20ppm and 80 ppm. Obviously that wouldn't meet gluten free standards, but likely wouldn't cause major problems either.

...

Well, actually, 80 ppm is over the allowed 20 ppm limit for gluten-free labeling, and it would cause problems for many people with celiac disease. I wouldn't eat their oats. Then again i don't eat any oats anyway. :)

IMHO-ing// Celiac disease is an autoimmune condition, it is not like lactose intolerance or like eating too much ice cream and getting an ice cream headache. The immune system kicks into gear when it detects an invader and it doesn't go half-sies or part way. It goes for the kill and does not let up quickly. That trigger amount of gluten in ppm is not proportionally related to the immune response. The response being kicked off is like flipping a light switch. The light switch is on or it is off. The immune response is on or off. 80 PPM is probably more than enough to trigger the immune system response, and that is enough to cause major problems. At least if you consider your intestines being attacked a major problem. I tend to consider that a major problem myself. //end IMHO-ing

People can have varying reaction levels I suppose. But they are looking at the 20 ppm standard as a safe level for most people to not have an immune reaction that causes damage. Some people will react at lower levels as their immune systems are more sensitive. The 20 ppm standard is not safe for everyone, IMHO.

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IMHO-ing// Celiac disease is an autoimmune condition, it is not like lactose intolerance or like eating too much ice cream and getting an ice cream headache. The immune system kicks into gear when it detects an invader and it doesn't go half-sies or part way. It goes for the kill and does not let up quickly. That trigger amount of gluten in ppm is not proportionally related to the immune response. The response being kicked off is like flipping a light switch. The light switch is on or it is off. The immune response is on or off. 80 PPM is probably more than enough to trigger the immune system response, and that is enough to cause major problems. At least if you consider your intestines being attacked a major problem. I tend to consider that a major problem myself. //end IMHO-ing

Also IHMOing here. I have the same opinion that the immune system responds to even traces of gluten. I don't agree with your "light switch" idea though. Our immune system is absolutely not all-or-nothing. Think about an infected cut for example. You can have a mild, localized response that defeats the infection. If it abscesses you might run a fever, lymph nodes start to swell, and you feel ill all over (all of which are caused by various cytokines). That's because more immune cells are recruited to the infection if the first batch that got there can't handle the situation. Different types of immune cells come to help and more quantity and variety of cytokines are released. The cytokines trigger backup mechanisms like fever, and antibody production goes into high-gear. This happens in the celiac gut too, with different IELs appearing over time and antibody production ramping up with continual exposure to gluten. If it were truly all-or-none, people could eat gluten once and get positive celiac tests.

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Also IHMOing here. I have the same opinion that the immune system responds to even traces of gluten. I don't agree with your "light switch" idea though. Our immune system is absolutely not all-or-nothing. Think about an infected cut for example. You can have a mild, localized response that defeats the infection. If it abscesses you might run a fever, lymph nodes start to swell, and you feel ill all over (all of which are caused by various cytokines). That's because more immune cells are recruited to the infection if the first batch that got there can't handle the situation. Different types of immune cells come to help and more quantity and variety of cytokines are released. The cytokines trigger backup mechanisms like fever, and antibody production goes into high-gear. This happens in the celiac gut too, with different IELs appearing over time and antibody production ramping up with continual exposure to gluten. If it were truly all-or-none, people could eat gluten once and get positive celiac tests.

Hmm, so you are going for the light dimmer scenario? :) Well, sounds about right. I still think the 80 ppm is too high for most people to eat without damage.

Not so sure I agree about the testing though. We know people with celiac sometimes "fail" the current tests even when they are on a full gluten diet. So there is no test right now that will always detect celiac without fail. For that matter there is no test that will prove someone doesn't have celiac. That might actually be a better way to look at it. If they could find a test that proves someone doesn't react to gluten then they could prove that person does not have celiac. Kind of a negative approach to testing?

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