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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.

Crap! I Was Gluttened....
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11 posts in this topic

So I have been gluten free for 2 weeks, and in those 2 weeks I have been very careful with what I eat. I have not eaten out once, for fear of cc. I have had an AWESOME response to the diet!! No gas, cramps, bloating...it's like I had a stomach transplant!!! :D

So, today I got brave and went to Whole Foods and decided to try something different from their prepared foods deli area. I got a quinoa sweet potato patty with wild rice. I asked the lady behind the counter if it was gluten free, and she said yes, but they cannot guarantee anything because they have no designated gluten-free prep area. Annoying, because I thought they were all about alternative eating (vegan, dairy-free, etc.) and since they carry a lot of gluten-free stuff they should be aware of Celiac, right? Not so much...

It's been about 4 hours since I ate the patty (it was gross, BTW), and I have horrible smelly painful gas and nausea. My vision is extremely blurry tonight as well, which was a symptom that had gone away with the gluten-free diet. So, I guess it either had gluten in it and it wasn't listed, or it's cc. Either way, I am screwed. :(

I guess you really don't know how sensitive you are to cc until you experiment, right? For the record, my biposy was normal (my blood work was NOT normal), so I guess I don't "officially" have Celiac disease in my ignorant GI's opinion, but gluten makes me pretty darn sick!!

Ugghh...this stinks.....literally..... :blink:

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Oh....I've been there and done that. I'm so sorry you found out firsthand how dangerous prepared foods can be. I got cc'd on Sunday when I wanted to treat myself to something special--I bought some ginger snap cookies from Trader Joe's. They're supposed to be gluten free (at least, that's what the package says), but I was sicker than a dog on Monday....though I still had to go to work. I really do try to stay away from any processed foods because it's just not worth the risk of getting cc'd.

Hopefully, you'll feel better soon....

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It takes awhile to figure out. I went to eating no boxed foods, no frozen entres, no fast food and no canned foods. Went I ate out it was salads, and still mostly is. Read every label. Amazingly I found wheat flour listed in my cookiung spray, in one of my favorite churizo sausage, in marinades, some ice cream and candy. Once your diet it tight and still get to feel bad and know it could not have been gluten then you have to figure what else could be giving you issues. I cannot eat high fructose, effects me like glutens.....it's in BBQ sauce, ketchup, candy, some drinks. One of my daughters cannot tolerate soy which in alot including mayo.

I have tried some of the gluten free products you can buy off the shelf like bread and cookies, and there is just something about them that does not set well with my stomach. It is not a gluten reaction, just like a yuck in my stomach so I don't eat them. I have done well with the mixes that are gluten-free and the pastas....I think it is alot of trial and error til you get it figured out.

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I guess you really don't know how sensitive you are to cc until you experiment, right?

So true. I still keep finding out.

I hope you feel better soon. As time goes on you do heal more quickly.

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I don't trust anything prepared from Whole Foods. I'm always surprised how unaware they are of gluten-free in that dept as they label everything vegan, etc.

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I'm so sorry they got ya! :(

I don't feel safe eating anything I haven't made myself.

It seems when you first go gluten-free you aren't as reactive to cc because your system is tired from fighting the gluten you were getting on a regular basis. As time goes on those immune "soldiers" are rested up and even a small trace will have them up and fighting it in full force.

All you can really do is use this as a learning experience and go from there. It really stinks that you're trying to be so careful and you can't trust those in the food business to be aware and careful of cc! :o

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I don't know about your Whole Foods, but at mine employees are very specific that their prepared gluten-free foods are not safe for people with celiac disease. I don't see the point of gluten-free pizza, sandwiches, and salads if they're not celiac-safe but I guess there are enough people who are "gluten lite" that it helps their business.

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I don't trust anything prepared from Whole Foods. I'm always surprised how unaware they are of gluten-free in that dept as they label everything vegan, etc.

I think it really depends on the store and the education level of the employee's. The 2 Whole Foods I frequent are phenomenal about cc in their prepared foods section even though they have the same CYA statement on their prepared foods. They would have to as it's not a dedicated facility. The stores I go to have employees that work those sections that have more food issues than I do so I trust their judgment when I ask the appropriate questions and I have never been glutened by anything I have eaten there.....in 6 years. I am extremely sensitive also and don't usually buy from shared facilities. I also use common sense when making purchases and wouldn't eat something that has been placed too close to the wheat stuff. I live in an area of the country which has really high awareness so that helps make a difference.

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Whole foods is horrible! When I first went gluten-free-free (though not carefully) to see if I have a gluten intolerance, I would get prepared chicken and salads there. I never got better.

To make things worse, I went in looking for a multi-vitamine with iron that was gluten-free and the girl gave me a supplement that had gluten in it. Of course, I got nauseous, threw up and got sicker. Stay away from whole foods. Trader Joe's and henry's, I have has better luck with.

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I got "Gluttened" at Costco recently. They were giving out samples of Apple/Raspberry Juice that was suppose to only contain those ingredients. But hours later after drinking the juice I had a horrible stomach pain and the usual bathroom problems that followed. When I looked at the ingredients on the label they added "natural flavoring" which now I know to stay away from! No more samples of anything at grocery or supermarkets or Costco for me.

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Hopefully, you can still sample the wine :D

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • 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!    
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