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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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Kimbalou

Yeah, But Yours Wasn't Real

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Am I being too sensitive? At work during a break the other day a co-worker said she was having macaroni and cheese for breakfast. I said "oh, I had that too!" (I've been eating Amy's gluten-free rice mac and cheese...it's so good) after I said that, another co-worker said "Yeah, but your's wasn't real!" I just said "well, it was real to me! Amy's has a lot of good gluten-free food!"

I know I am depressed lately, so I am very sensitive to what people say...but I am curious to know if this would have bothered you? I guess people think pasta isn't REAL if it isn't WHEAT? Come on!

I am ready to eat in a different place at work because it seems like 95% of the time the focus is on what I am eating even when I don't bring food topics up! Can't people just eat without talking about the ingredients of food or ask me questions about what I can eat? Yes, I told most of my co-workers about Celiac..it just seems like the subject always comes up!

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Wow! Then the calories aren't real either! :ph34r:

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I can so relate to your post! I work with nurses and have made it a point to have lunch before their official lunch hour (1 pm - 2pm). Inevitably, somebody walks to the lunch room :P and quizzes me about my food. In some respects, I wish I'd never said anything about my diet, and that my co-workers weren't so wrapped up in what I'm eating. In other ways, I feel like I's educating people that should know.

I've started questioning them about their food choics too, but only if they challenge me with an insidius remark about what I'm eating.

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I might have said "If it isn't real, then what the hell was that in my bowl? :blink: dammit, am I hallucinating again? "

:)

You seem to be getting bombarded with "ignorance" lately, kimbaloo...sorry, honey. (hug) I saw your other post.

You said you are depressed and maybe too sensitive...could be!

I know when I feel this way, ordinarily stupid stuff people say rolls off my back or I have a snappy, sarcastic comeback--but sometimes, it gets to me, too. :rolleyes:

Have you tried saying something privately to this person telling her that it hurts your feelings to have your food issues pointed out in front of everyone?

(For the record, my doc says celiacs eat better than most people. :) so what does she know)

Next time, enjoy your mac and cheese and savor it, saying loudly YUM, YUM, YUM

while chewing.

As my Dad would have said about people who are rude, "screw 'em, kiddo! let it go!" (ooh, can I say that on here? if not, I'll issue a warning to myself :) )

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Any chance they could have been referencing homemade vs. frozen, etc?

I live by the "pick your battles" mantra in many ways - this includes what I allow to get under my skin.

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I would have replied with: "yes, my food was an hallucination and you imagined the whole thing...you might want to see a dr about that!"

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I'd be upset. I have to give people the Benefit of the doubt. This Is strange for me too! All the questioning makes me second guess myself so I have to put it in its place.

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I tend to call my gluten free foods fake, but my household is split so we have both regular and gluten free bread and some other things. Since I find having to call my special foods gluten free as depressing I call them fake. I think it makes me feel better when they don't live up to my very fond memories of wheat based products. To me if it's fake then it's not going to taste the same.

But, if it really bothers you some of the posters above had really creative suggestions.

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The comment was meant to compare the difference between wheat mac and cheese and non-wheat. I work with nurses too, I am one! But, I can't believe how rude some of them can be about the Celiac issue. It doesn't make sense to me! I told my co-workers when I was diagnosed...hoping they would be considerate about it. Most people are ok about it, but some of my co-workers are awful. I also wish people just wouldn't talk about food when they are eating. I am more sensitive now, for sure. Another co-worker was eating a cookie and said "Oh, this cookie is so good" right in front of me. But, I know I am hypersensitive to comments like this. The "fake" comment made me feel worse. I have to let it go.

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Another co-worker was eating a cookie and said "Oh, this cookie is so good" right in front of me.

Just imagine her growing fat arse from that cookie and laugh to yourself. :lol:

I have 4 friends who are nurses (3 women and 1 man). They are very giving and intelligent people, but totally unaware of celiac and no matter how hard I try to explain it, it just does not register. 3 of them are gluten intolerant themselves and have OBVIOUS symptoms, but won't do a thing about it.

It is unkind and offensive what she said, hon --and sadly, we cannot change people's personalities. Only how we respond to them.

All of us have stories such as yours and we do understand.

And your food is not "fake". It is sustenance. It keeps you healthy.

((hugs))

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Aw sweetie I'm sorry. *hugs* Take it with a grain of salt though, a lot of people that aren't on this diet simply just don't have any idea what gluten-free food is. They think of it is something "fake" or "artificial" like a Diet Coke vs. a "real" Coke. They don't mean to hurt your feelings, I'm sure. Don't give up. The more you eat "your" food around them, the more they will come to learn that it is just like theirs, but with different ingredients. They might even take a taste one day and decide they like it! Be patient.

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The comment was meant to compare the difference between wheat mac and cheese and non-wheat. I work with nurses too, I am one! But, I can't believe how rude some of them can be about the Celiac issue. It doesn't make sense to me! I told my co-workers when I was diagnosed...hoping they would be considerate about it. Most people are ok about it, but some of my co-workers are awful. I also wish people just wouldn't talk about food when they are eating. I am more sensitive now, for sure. Another co-worker was eating a cookie and said "Oh, this cookie is so good" right in front of me. But, I know I am hypersensitive to comments like this. The "fake" comment made me feel worse. I have to let it go.

You do not need to tolerate this if you don't want to. I'm pretty sure what you're experiencing would legally be considered disability harassment, since it's so pervasive that you want to go eat somewhere else. It would fall under the hostile work environment laws. You need to politely ask your coworkers to stop bugging you about your diet. If the harassment continues, go to HR and explain the situation.

I have also gotten adept at turning conversations away from food. I would strongly suggest you cultivate the skill. Skim headlines in the morning so you have something interesting and relevant to talk about.

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Skylark, that's a good point. I am definitely going to steer the conversation in another direction at meal times. I also think I am very sensitive.

You would think medical people would get it, but crazy how some don't!

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Just imagine her growing fat arse from that cookie and laugh to yourself. :lol:

I have 4 friends who are nurses (3 women and 1 man). They are very giving and intelligent people, but totally unaware of celiac and no matter how hard I try to explain it, it just does not register. 3 of them are gluten intolerant themselves and have OBVIOUS symptoms, but won't do a thing about it.

It is unkind and offensive what she said, hon --and sadly, we cannot change people's personalities. Only how we respond to them.

All of us have stories such as yours and we do understand.

And your food is not "fake". It is sustenance. It keeps you healthy.

((hugs))

Funny, i will have to think about how fat these people could get when they eat all the donuts and pastries the doctors bring in too!

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I've worked in the medical field for years, but I'm not a clinician. After two years gluten-free, it seems like my neighbors know more about celiac disease than my doctors do.

I lost a good RN friend of more than 10 years in this battle. I told my DP that I understood why. She deals with sickness everday she works. It's too much for her to handle with friends on her time off. I think we'll reconnect down the road.

I

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I actually had a Dr. say this to me when I took my daughter in for allergy testing to see if she had outgrown some of the allergens. "But your husband is Italian! Italians eat pasta made with wheat! He won't like that at all!" This Dr. was from India if that makes a difference. Probably not but perhaps they have a different attitude towards food than we do? Anyway I replied, "Well... He has been eating the rice or corn pasta and hasn't noticed a difference. He likes it just fine!" She acted like it was a miracle.

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Funny, i will have to think about how fat these people could get when they eat all the donuts and pastries the doctors bring in too!

I was once a fatty myself--from all that gluteny wheat--but getting celiac took care of that. I was almost skeletal for a while there.

I did not mean to be flippant about obesity (before anyone gets upset with me :rolleyes: )I was merely trying to give our Kimbaloo something to "go to" in her head ---something amusing---so she does not take all this to heart.

Humor often diffuses bombs. :)

Well, hon, we gave you our best thoughts. Steer the conversation away, speak to them personally about it, blow it off entirely, or envision wide arses. :D

In any case, hopefully it will get easier for you. We have enough to deal with; we don't need anymore stress.

All the best, IH

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I am sitting here eating my own lunch as I read these posts. I made myself a Thai salad. One thing I love about eating gluten free is that all my food is "real." Nothing I ate was processed. My rice noodles were the only thing I didn't make myself and according to the bag are made from "rice and water." And, if I don't say so myself, it was delicious.

As to the Mac and Cheese, here are the ingredients from the Kraft page. It seems to me it is a meal more of chemicals than of "real" food. You could point that out next time if someone makes a comment!!!!!!

Ingredients: ENRICHED MACARONI PRODUCT (WHEAT FLOUR, GLYCEROL MONOSTEARATE, NIACIN, FERROUS SULFATE [iRON], THIAMIN MONONITRATE [VITAMIN B1], RIBOFLAVIN [VITAMIN B2], FOLIC ACID); CHEESE SAUCE MIX (WHEY, CORN SYRUP SOLIDS, MALTODEXTRIN, PALM OIL, MODIFIED FOOD STARCH, SALT, MILKFAT, MILK PROTEIN CONCENTRATE, CALCIUM CARBONATE, CONTAINS LESS THAN 2% OF MEDIUM CHAIN TRIGLYCERIDES, SODIUM TRIPOLYPHOSPHATE, WHEY PROTEIN CONCENTRATE, CITRIC ACID, GUAR GUM, SODIUM PHOSPHATE, LACTIC ACID, CALCIUM PHOSPHATE, MILK, ARTIFICIAL FLAVOR, YELLOW 5, YELLOW 6, APOCAROTENAL ENZYMES, CHEESE CULTURE, NATURAL FLAVOR). CONTAINS: WHEAT, MILK.

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it's like saying rice porridge isn't real because you didn't use oats haha.

Honestly you were being nice by not laughing at her intelligence. You're the one who did her a favor :-P

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I love that Amy's mac and cheese. Maybe it's for the best that other people think it's "not real". If they discover it tastes better than the gluteny Kraft kind they may buy it up! ;)

There are a few ladies at my work that inspect my lunch. They always crinkle their nose up and ask if it's good. I always wonder why they think I would bring it if I didn't like it? These women eat ramen noodles most days so I just remind myself that they are clearly not food people and their opinions are suspect! lol

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There are a few ladies at my work that inspect my lunch. They always crinkle their nose up and ask if it's good.

Next time, try this :lol:

"Oh gosh, no!!....it tastes like a sweaty sock dragged through dog poo, ....but (now, pause, heave a heavy sigh and put your hand to your brow dramatically ) it's the cross I bear."

Work up a tear if you can.

If they say "Oh poor dear. Is there anything we can do?"

Say, "wash my car, do all my paperwork and give me $50 bucks?"

It'll be fun!

:lol: :lol: :lol:

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It's funny, cause little jokes like that make me feel better! I also have always had a tendency to feel more comfortable in the presence of "humor."

I got a new job position just as I was going gluten-free and I'm in a completely new building with completely different people now. I've chosen so far to keep my gluten-freeness (I know that's not a real term, but oh well) to myself. I just don't want people to make a big deal of it, or think I'm making a big deal of it.

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It's funny, cause little jokes like that make me feel better!

Reminds me of a non-food-related story someone told.

She had just started a new job, and had to tell her boss that she was pregnant. I'll just tell it as she told it:

Friend: "Well, you know that medical appointment I had? So.....it turns out I'm pregnant."

New boss: "oh.........and.......is there a father?" (friend is unmarried)

Friend: "Yes, donor 294"

New boss: "..........oh..........is..... that your own personal list?"

She says he's still her favorite boss (although I don't think he's her boss anymore).

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Friend: "Well, you know that medical appointment I had? So.....it turns out I'm pregnant."

New boss: "oh.........and.......is there a father?" (friend is unmarried)

Friend: "Yes, donor 294"

New boss: "..........oh..........is..... that your own personal list?"

:lol: :lol: :lol:

hmm, IH wonders.....does this mean that her baby "isn't real" either?? :D

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
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