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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.

How Do I Know If I've Been Glutened And What Is Causing It?
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9 posts in this topic

I've been on the gluten free a week and I'm wondering if I'm doing it right or if maybe I'm eating things that have been cross contaminated. Should I be able to see changes in how much I poo yet? I'm still going about 3 times a day like I did before. And if I am getting cross contaminated how can I tell what is doing it? Like if I have to go to the bathroom right after I finish eating should I be suspicious of what I just ate? And what if it isn't right after a meal? What should I be looking for then? I read food labels. Thanks.

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After a week you probably won't be able to tell the difference. On top of reading labels, you need to ensure that you aren't cooking your food on contaminated crockery, there are also many processed foods that don't have any suspicious ingredients but are notorious for cross contamination because of being made on the same lines as other foods. Stick with whole foods for a month, then reintroduce processed foods so that you are able to tell what it is that is causing the problems.

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Thank you for your response. How long should it take before I should notice a difference? I probably should mention it looks like I've had this a long time (37 years) and my doctor mentioned it would take longer for me to heal because of it. He didn't say how long before I should notice a difference.

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a tip: I lived off potatoes, Hormel Chili (It's the with beans that's gluten-free, and it says it on the can) and M&Ms for the first month and a half. After that, I added in Hamburgers (from Hardees. We lived in a hotel so I was limited). I don't personally advise fast food, but potatoes and chili, maybe smoothies (Just fruit, the milk of your choice, and the green of your choice. My fav way is Kale, frozen Mixed fruit, and Vanilla soy, but some have issues with Soy, so you might try Coconut or Almond) would be good and they are all whole foods that are healthy. (Well, the Chili is less so.).

I've also read along here that cookware can be contaminated, but that the dishwasher cycles are great help to prevent that. So you might do that or just buy some plastic ware and not cook until you can afford a new set of dishes. Or a dishwasher ;)

If you aren't feeling better, some things I was told when I was a (more of a) newbie is to watch out for shampoo, makeup, body wash, etc. I've not actually found a shampoo with gluten other than high dollar ones (or oatmeal ones), but I have found that the head and shoulders is clearing up my dandruff that I've had for years. (It didn't work when I wasn't gluten free. I only tried again because Treseme and Aussie shampoos don't get along with my hair).

If you're disliking the gluten free breads etc, just remember, you'll get used to the taste! I accidentally ate a graham cracker (stupidity, as everyone knows that smores, even in snack form, have graham crackers) and it was nasty to me. But I've liked every gluten free food I've eaten except Annie's bunny crackers (and Udi's bread, but I think that's because I refrigerate instead of leaving frozen OR unfrozen.).

Eating pure will be the easiest. I've glutened myself in the last week and have no clue what from (probably CC even though I'm the one cooking dinner) because I'm not eating pure. Just be careful. If you can avoid CC, do it! :)

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I was diagnosed at 38, and I noticed a change within days. Some here don't seem to have any change for weeks, however.

But if you are having the runs right after you eat, I think that might possibly indicate that you're getting something that's making your body unhappy. It could be gluten or could be lactose (many of us are lactose intolerant when we're still healing, because the damaged villi don't make lactase as well. Or could be something else - a lot of us discover that we have food allergies we never knew about. Not the type that give us hives, but foods that make our stomachs hurt, give us the runs, give us headaches, etc....

Keeping the foods simple and keeping a food journal of foods you eat, and how you react, and the timing for each, may help you figure out what is getting you, if anything is. And if nothing is and it's just healing, then the journal would show a slow progression of symptoms getting better, yes? :-)

It might help to get a new pot or pan and a new cutting board, and just use them for a week, see if it helps.

Oh, do you have any children or a significant others? If you do, if you kiss their lips, tummies, and so on - those need to be gluten free, too. :D

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I wrote a big post about being 100% gluten free that might help you find some of the potential sources of contamination. You can find it from the blog linked on my profile.

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When I first started I cut out pasta and bread but wasn't looking at all the ingedients listed on packaging. I did continue to have black stools. What I noticed though was the gas and all the racket it my stomach left. I did this for about 6 weeks, then tried a plate of pasta and saw the difference and knew I was gluten intolerant. Tightened my diet, started looking at all ingredients, keeping my diet simple so I could tell what was and was not affecting me. Doc then wanted me to also stay away from dairy to see if that may be giving me issues. I ate alot of salads, veggies, fruit and meat. Then I got dosed.....not from wheat, only thing it could have been was highfructose and it made me as sick as from eating any gluten product. After about 6 weeks off dairy I went back on, had a slight intolerance but am taking daily aide that works. I have since been trying recipes replacing wheat flour with gluten free flour, mixes, ect and I am doing real well. It took me about 4 months to get my system corrected where I no longer had bowel issues.

There are people who are alot more senstive than myself that cannot eat products with corn or rice. Oats, or any other kind of grain should be labeled gluten free, otherwise don't buy them.

You are having absolutely no symptoms from a dose of gluten? There's some issues I was having that at first I was not connecting to the glutens, perhaps something will ring a bell for you: blurred vision, foggy/forgetful memory, problems with depth perception, balance issues, turmoil in stomach, gas, bloating, bowel issues, tired, muscle spams and twitches.

The twitches were due to a lack of potassium my body was absorbing so I started eating lots of potassium rich foods. Started taking vit B12 for the memory, added Lysine to my diet which is a digestive aide, started taking a probiotic and with a clean diet my health slowly improved. Now if I get dosed I have a bit of a headache, stomach issues, tired, balance issues and memory problems. It's the hidden stuff you have to look for like marinades, BBQ sauce.

I hope that helps!

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I noticed a change in bowel symptoms after around 5 or so days. The improvement was gradual. The fatigue however continued on for a little bit longer but is gradually improving.

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Thanks for everyone's responses! Sounds like it really varies as far as when people start feeling better. I'll try and eat more natural and be patient and hopefully it will all start getting better soon.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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