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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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ryebaby0

Pity Party/ College Search

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Ok. I am grateful we are even at this point. I am. But I am here to whine about The College Search from a food-issue point of view, and don't anybody tell me it will all be okay and I shouldn't be whiny. :)

Big University #1 says they feed lots of celiacs, and he'll be fine. Except there are only 6 choices of gluten-free foods. Total. For four years. When I asked if they thought that was reasonable, they told me that if I didn't think it was reasonable, maybe another school would be a better fit.They also have a menu that keys to the major allergens, but not gluten. And the items that are okay are only served in giant lines. He wants to go here.

Arts School #2 says they don't allow any cooking in rooms, for any reason, for anyone. If they made an exception, everyone would want a microwave. No kitchenettes in the dorm. If I dont like that, I am free to "secure a private apartment in the city" on my own. There is no policy about eating in their only cafeteria and they do not check the food contents nor would they. He liked this school.

Private School #3 says there's no gluten in their food. They don't use additives. Oh wait, that gluten? Oh, they can't be responsible for knowing what's in the food that arrives from the service. He can have a microwave in his room, though. But my son didn't love this school anyway.

Private School #4 has an allergy-free kitchen in addition to the mainstream one, where students who have registered can have their food made to order for each meal. Gluten free items are tagged and in a separate serving line. There is a allergy-free convenience store aisle at the student commons' store. My son hates this school in every other way.

There are bigger problems, I KNOW. But as I used to cry in the cookie aisle, or when it was "make a pretzel log house" in 4th grade, it is hard to think here is a talented, academic student who has to rule out schools because they won't feed him. He is dangerously thin as it is -- so there's no room for error here, or a low-calorie salad bar diet. Yes, I know it can be done. Yes, I know. But it makes me sad that schools are so "well, we couldn't possibly accomodate him".

End of whineathon. Getting off the couch :)

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I just got through that very same problem as I just started college. I found that my favorite college could "do gluten free" but they put it on the same line as the rest of the food buffet style. I dicided to go through disabilities services and the college was forced to accomadate my needs. All I needed was a note from the doctor stating what was wrong (celiacs) and what they needed to do for me ( provide me with either a kitchenette or accomadations in the cafeteria). Through disabilities I was able to talk to others at the school who also have celiac and find out what they did and how the food service was accomodating them. I found that the food service was terible at accomadations so I opted for a kitchenett, so the school put me into an efficiency apartment on campus so I can cook all of my food my self, I am not to fond of this but it's better than worring about it all the time and it allowed me to go to my favorite school. If you go through disabilities they are required to accomidate your son. I would try that

hope this helps

nicole

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Has he ever had a 504? That would cove most of your issues for state schools.

I hate to think of him not going where he wants based only on the food available. If he's willing to learn to cook (which he'll need to do anyway at some point), I would go for the school he wants and get him cooking so he isn't limited to the 6 foods the school offers.

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I would go with number 2 if that is a school he wants to go to. He can share a place off campus with other students to save some money and you won't be charged the room and board fee at the school so that will help to offset the costs.

My DD faced this same issue at her school when they insisted freshman live on campus. The school admitted they couldn't feed her safely and put her in senior housing the first year so she would have a kitchen. She went into an off campus apartment the next year.

Do contact the disability office at the schools you are considering as celiac is covered under the ADA. They should be more helpful than admissions.

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Brilliant Nicole!

I will be facing this in 2 years with my son.

Thank you for that information.

And to Ryebabyo--

That was no whine...

It was a very informative statement on the bass ackwardness of colleges to recognize or understand the severity of food intolerances or the dangers of gluten for Celiacs. In the next 100 years they will be forced to change as Celiac/Gluten Intolerant students will be coming in droves. But that doesn't help us or our children now does it? Those are very interesting and very disheartening answers you got. Except for the one from the school he doesn't like. Well, good for them anyway for at least being proactive.

Wish you the best of luck, maybe an apartment will be the only way, unless you have success with the disability route.

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Okay, so I know all that. I get that if I go through 14 offices and 16 people and fill out 32 forms, half of which will be lost, discarded, or ignored, he can be assured that when he goes to eat, there will be something that meets the legal definition of a meal. It's not like we are new to the whole concept. Since we live in a college town, the Big U's response is to have him live at home. Because that's satisfying. I just am So Tired of the world acting like they are doing me a favor with their miserable, substandard, inadequate "services". Most schools do not have efficiency apartments, and if we were to take oncampus housing, we'd be required to have a meal contract -- essentially paying a small fortune to go to the campus facilities, and find out there is nothing to eat. He could have a micro-microwave and a teeeny 'frig in a town with no markets -- so where is he getting the food? He went to camp at this school, we did all the paperwork, met with food service, met with the staff, filled out paperwork to get him allowed to have food in his room --- and he lost 7 pounds in one week. They fed him one 8" pizza for lunch, and yogurt for breakfast. I drove in every day to bring his dinner. I can't do that for college.

Sorry to rant. We've tried the "we can do this" attitude, but really, some of this can't be altered or changed by paperwork. We all know that in the end, someone is using the wrong utensil, the sub is contaminating the serving line, etc.... Okay, okay, I'm done!

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One option is to expand your search area. There are thousands of Colleges. Not sure if you are in the US or which part of the country.

My son (not gluten-free), lives in a dorm with a full, beautiful kitchen on the first floor. I didn't have to delve into the gluten-free food thing, but I saw that they have choices including food provided & cooked or no food plan & cook in the dorm. Whole Foods is across from the campus. Groceries within walking distance as well as a good bus system. Scheduled bus runs for the dorms to Target, etc. Just to show you that there are schools that can work.

Dorm living is a great way to meet people, so its great for Freshmen. You may just have to continue looking.

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I'm sorry. This all really sucks. Reading your post was a big eye-opener for me. Both of my kids have celiac disease, and my oldest is 10. Hopefully in the next 7 to 8 years things will be better for us, but I'm not optimistic. I feel for you. I hope you can find something that really works for your son.

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Oh thank you ;) It is not unexpected, it just is irritating/depressing/frustrating and sucks a lot of the excitement out of the college search. And as for gorgeous dorm kitchens, he would never eat or cook in a common kitchen shared by 60-100 other students. The level of cc boggles the mind. My whole point here is that we can't expand the search, and the schools, for the most part, are blindly resistant to what they seem to feel is a big imposition. Like living gluten-free has been a walk in the park for HIM. With so many people with food issues, I just was so shocked that most schools are still using giant serving lines and are not voluntarily making accomodations (hello? don't know what's in your food? realllly?) just to attract students. Yeesh. I'm just yeesh-y today !

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My son's school & another school his friends go to have kitchens you reserve. He could have it every day, by himself with his own pans. He keeps the food in his fridge in his room. He can have a microwave in his room for the leftovers for lunch tomorrow.

If you won't consider other schools, you will have to figure out how to work with what you have available. Or fight for more. Either way, it's a good learning experience for him.

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My son is only almost 11 and we just had a big whine-fest about this potential future problem. :rolleyes: It's a hassle and it sucks. Our plan at the moment is for our kids to go to community college as high schoolers, and then transfer to wherever they want to go so they can live off campus. Of course there's always the possibility they'll really want that dorm experience.

I'd have him pick the one that is the best fit socially and academically, and then fight like hell to make them allow him to shop and cook safely (on campus or off) for himself. Out of curiosity... why are these the only schools you are considering? There are several great schools in my hometown (Portland, OR) where students don't have to live on campus and they have some of the best access in the country to all sorts of gluten-free options.

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fight like hell to make them allow him to shop and cook safely (on campus or off) for himself. Out of curiosity... why are these the only schools you are considering? There are several great schools in my hometown (Portland, OR) where students don't have to live on campus and they have some of the best access in the country to all sorts of gluten-free options.

His academic interests/career path is very specific, we are not millionaires, we have another child in college. Apartments here in my college town run about $2000K/month; he could get 3 roommates and pare that down but that adds "find roommates" to the mix. @kareneng, I am struggling with your tone of I am just not trying hard enough. Many schools flatly refuse microwaves or frig, or if they have them, they are too small to be practical (again, he's lived in a dorm already like that) OR if they had them, there's no source of food. We have considered/looked at many, many more schools than this. He has other medical issues that make all of us uneasy with him being on a campus without topdrawer medical care available (either on or off campus) and quite frankly, I kinda internally resent a world that says to fly him across the country just so he can eat properly, not because east coast schools CANT do it, because they WONT do it. And yes, if I sue them, I can MAKE them do it. Maybe. Again, I know all that. I am just saying it surely seems unfair (and don't anyone tell me life isn't fair. we are keenly, exquisitely, totally, aware of that)

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I sympathize for you. I'm so not looking forward to this. My 10.5 yr old is currently undergoing a gluten free trial and my 6.5 year old is diagnosed. Hopefully things improve!! Keep your chin up! ;)

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Who do you talk to when you you ask about food arrangements at each college?

I start with admissions, asking who to go to. Typically, I've already looked over the food service info on the website, including any ADA requirements or special diet forms. (If they don't have those things, you already know you're in uncharted territory). I exchange emails with a food service director, and then try to get referred to an actual dining hall manager (the difference in what a director says, and what the manager does, is stunning. so far, managers rule, and are much more helpful). At Syracuse, they also gave me the email of a tour guide who is also a celiac student so he could ask her questions. When we visit, I try to make an appointment with someone in food service or at least make sure we see the dining hall(s) but that is surprisingly difficult to do at some places. My son (reasonably) asked that we not be the family asking gluten-free questions at some overall admissions meeting. At Ithaca, he was referred to a student group that helps guide the special diet kitchen planning/meals. We have not visited schools that are patently resistant to being helpful. (And there are many) I have gotten emails from admissions and from food service saying everything from "we have it covered" to "we are clueless so what would you want". Those of you who have done college searching with sons know that the more mom does, the less we like any given school, so most of this is done on the dl while he just surveys the school as a whole. (Don't say it -- of course he knows how to advocate for himself, this isn't a lost opportunity to tilt at the windmill of gluten-free dining)

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My daughter is a senior in high school this year so I am looking at the same issues. Even worse, she is in the super sensitive category. She can't eat in restaurants, so I don't see how she can eat in a dorm. We needed to have a gluten free household. She will need to get her own apartment and live by herself. Just finding safe food will be an issue. We have a hard time with a lot of the food available in the store. We need to do farmer's markets and I grow much of it myself. Of course she won't be able to grow her own food in college. It is a real challenge.

Do a lot of schools insist on dorm living the first year?

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I went through the same path and after food service gave me a list of what they could provide me (a salad) for every meal I took that list and the emails between us and a note from my gastrointerologist to disabilities and the people in disabilities were really understanding and helped me through the rest of the process. I wish you luck and know where your coming from, my top school choice told me they could handle gluten free and because of that disabilities couldn't help me.

If he does end up cooking in a dorm some schools let you bring in a larger fridge for a small fee, I use a rice cooker and a slow cooker. I have a car on campus but if that isn't plausable than a lot of people will give rides to walmart or other stores.

I wish you luck and hope that his favorite school will understand and help out.

nicole

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Do a lot of schools insist on dorm living the first year?

I think many of them do, but getting an exception based on food issues can sometimes be done. Some of the schools would prefer you do that and get them off the hook. It has been tiresome to find out all the combinations of strategies at various schools, but maybe he'll just apply where he's interested, we'll see if he gets in , and make accepting based on further research about actually living at these places.

apartments for incoming freshmen is hard. I know here, apartment contracts for next year (2012-13) are being signed NOW through November, long before any potential freshman could be contemplating an apartment alternative.

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If you are looking for a college on the east coast check out the University of Hartford. I know several celiacs and others with severe food issues who went there and one who still does. They have on campus living that has a full kitchen, plus there were gluten-free options in the cafeterias, and there was an aisle of gluten-free food in the on campus market.

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I start with admissions, asking who to go to. Typically, I've already looked over the food service info on the website, including any ADA requirements or special diet forms. (If they don't have those things, you already know you're in uncharted territory). I exchange emails with a food service director, and then try to get referred to an actual dining hall manager (the difference in what a director says, and what the manager does, is stunning. so far, managers rule, and are much more helpful). At Syracuse, they also gave me the email of a tour guide who is also a celiac student so he could ask her questions. When we visit, I try to make an appointment with someone in food service or at least make sure we see the dining hall(s) but that is surprisingly difficult to do at some places. My son (reasonably) asked that we not be the family asking gluten-free questions at some overall admissions meeting. At Ithaca, he was referred to a student group that helps guide the special diet kitchen planning/meals. We have not visited schools that are patently resistant to being helpful. (And there are many) I have gotten emails from admissions and from food service saying everything from "we have it covered" to "we are clueless so what would you want". Those of you who have done college searching with sons know that the more mom does, the less we like any given school, so most of this is done on the dl while he just surveys the school as a whole. (Don't say it -- of course he knows how to advocate for himself, this isn't a lost opportunity to tilt at the windmill of gluten-free dining)

That's quite a complicated process! I really feel for you for all the work you've had to do. I was wondering if the diasability offices could give you better information. I used to work for a big public university and they don't really cover much on how disabilities are handled so it doesn't surprise me at all that some people are clueless. Most admissions offices might not even consider Celiac a diability but technically (by law) it is. They would automatically refer anyone in a wheelchair or with vision impairments or needing a sign language interpreter to the disability office. But celiac or food allergies are a different story (if they have even heard of celaic or know what gluten is you are doing good). I wish you luck finding the right school!

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Some schools treat it as a disability issue, others just want to accomodate it as another special diet. Celiac is different than an allergy, so it just depends on how educated the school is, or wants to be. If its a disability, there are all sorts of legal issues and forms and doctor paperwork so I'm not in a hurry to have that be the choice!

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If its a disability, there are all sorts of legal issues and forms and doctor paperwork so I'm not in a hurry to have that be the choice!

I think it depends on the school. My DD went to Northeastern and her enterance essay was about her joy of finding out she could still have a Snickers bar on the diet. We had to do no paperwork at all and they were very helpful. She had a room of her own and her own kitchen and the only hassle we had was getting a refund on the meal plan.

You may want to contact the disability office in each of his chosen schools and find out what the procedure would be. It might be easier than you think and if it isn't then you could cross it off the list.

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I think it depends on the school. My DD went to Northeastern and her enterance essay was about her joy of finding out she could still have a Snickers bar on the diet. We had to do no paperwork at all and they were very helpful. She had a room of her own and her own kitchen and the only hassle we had was getting a refund on the meal plan.

You may want to contact the disability office in each of his chosen schools and find out what the procedure would be. It might be easier than you think and if it isn't then you could cross it off the list.

The difficulty I've had so far at least, is that schools who have made "accomodations" by having any sort of gluten free food do not, as a result of that gluten-free food, consider celiacs eligible for any other accomodation. You don't need a kitchen if we are feeding you in the cafeteria kind of thing. I've also gotten several "well, we'd need to see whether he is accepted before we discuss it" answers. But yes, usually we talk to disability and food service. Or both.

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I feel your pain. It was something we asked the colleges my daughter applied to last year. She just started college last week. She has not been diagnosed but knows gluten bothers her. Eating at home she was basically on a gluten light diet because she knew too much made her sick. I had blood work done a couple weeks ago...but should have known it probably wouldn't come back positive...especially eating gluten light. Now she's in college...no diagnosis and realizes it's going to be very difficult to eat gluten free in the dorm. When I talked to the head of the kitchen in June at orientation the first thing she said was "is she officially diagnosed?"...told her the situation and she said well, let us know what we can do for her..but also mentioned a doctors' note. We were a little misled at the orientation...during those meals things were labled and every meal had gluten free main meal options...and even gluten free desserts. Now she's on campus and there aren't main gluten free main dishes. Just a little tiny refridgerator in the cafeteria with gluten free foods. Kind of sucks for her. I told her to just eat the best she could and if she's feeling awful she'll have to talk to someone about her meal options. She knows gluten makes her feel sick...I hate that she has to get that official diagnosis to really have any options as far as what the school will do for her.

Good luck with your search! I hope you find a school that works and works with you!

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I feel for you! My husband (who also has celiac as does my 3-year-olds daughter) is a manager for a college food service. He has worked with many of the chefs on campus to provide a lot of gluten free options for students who need it, but it was difficult. I definitely agree that talking to disability services is needed, as well as the hall food service managers, but see if you can actually talk to the chefs at the residence halls - they are often the ones who order food stuffs and can make multiple types of gluten free dishes. One of our friends, who is a chef at a residence hall, had a blast coming up with gluten free recipes for a gluten-sensitive student in his hall. Admissions don't know a dang thing - don't go through them. But talk to the food service people, and have your son sit down with the chef and food service manager of the residence hall he is in as soon as he can, if that is the route you take.

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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. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • 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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