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MitziG

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MitziG last won the day on January 11 2015

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About MitziG

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    Dx via blood and biopsy April 2011, two kids dx at the same time
    Dx with Interstitial Cystitis April 2011
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    Virginia

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  1. Oh SMH the idiocy of doctors never ceases to amaze me. With a first degree relative with celiac, your chances are 1 in 12. Throw in your symptoms, a questionable biopsy and a positive ANA and you might as well be waving a red flag at them. Sigh. Hope by now you have gotten some answers. I am so very sorry about losing your baby. How awful. Stories like yours are all the more heartbreaking when you know it maybe didn't have to be that way if more doctors were on the lookout for celiac. In my opinion, EVERYBODY should be screened. So very angry for you!


  2. Have you found anything more out? I see your post is a couple months old. If not, was just going to ask if they did an EMA test at all? A positive EMA would definitely mean celiac. My only idea for the increase in ttg is that the disease is continuing to progress because he is getting cross contaminated by gluten. If you have gluten in the house, it is really easy to do. He could also be developing increased sensitivity- meaning his immune system is reacting to levels of gluten considered " safe" for most celiacs (most packaged gluten-free food falls into this category. Has to be 20 ppm or less to get a gluten-free label, but some celiacs cant handle 20ppm) Lastly...does he eat oats and dairy? Many celiacs will have an immune response to them due to the proteins being similar to gluten. If you have cut out gluten but he is loading up with the other two, that could be your problem. I hope you get some answers!


  3. Also, constipation is a hallmark of celiac. My 11 year old was on laxatives from 2 months until he was five...because he was undiagnosed and I didn't know any better to ask about celiac. He was BREASTFED and constipated..that just doesn't happen unless something is really off. They just didn't bother to find out what it was. Gave him acid reflux pills for the spitting up and laxatives to poop

    treated the symptoms because they were too lazy to look for the cause. Makes me madder than words can say because he suffers permanent issues because of being undiagnosed for 6 years.


  4. No doubt about it, sorry. Your daughter most likely has it also. Low positive is like being "a little bit pregnant." You can actually have massive intestinal damage have completely negative blood work. She needs an endoscopy done pronto. If you want to put your son through it, keep in mind, celiac can be easily missed with an endoscopy. The intestinal area is the six of a football field, and celiac can show up in small patches. Biopsies ate hit and miss. A negative biopsy doesn't mean he doesn't have it, even if the GI tells you that. You will find more knowledge on this board than a hospital full of doctors. His blood tests are undeniably, indisputably positive for celiac, and if you put doubt in his mind about that, you are doing him a great disservice.


  5. SMH it is Drs like this that drive me bananas. Stupid GI and he doesn't know what to look for.

    #1 Positive EMA = celiac. Period.

    #2 Celiac can not be diagnosed with a colonoscopy. He is either dumb or just wanted to bill for an extra test.

    #3 Celiac is easy to miss in a biopsy. It is often patchy and many drs only take one or two samples...which I would bet money is the case. Minimum of four should be done, but 8 is better

    #4 He diagnosed lactose intolerance because the tips of the villi showed damage. That is where the enzyme necessary to digest lactose is made. Know what causes the tips of the villi to be damaged? Celiac! Argh. Get another GI, pronto.


  6. You have celiac. Your low IGA is causing false negatives most likely. Dgp test I specific only celiac. However, having a diagnosis is helpful because without having it, doctors wont take you seriously when you say you need to be gluten-free. If you are hospitalized, you may not get to order from a gluten-free menu without a diagnosis. Many times it will be important, so try to get it. Your biopsy is indicative of celiac as well. Either they missed the worst area or you don't yet have significant damage, but the scalloping of th e duodenum combined with the positive dgp is a slam dunk.


  7. Word of advice when it comes to doctors...be prepared to tell, not ask. Most of them (even GIs) don't know diddly squat about celiac. Spend a few hours on this forum and you will know more than they learned in medical school. Be your daughters advocate. She almost definitely has celiac and don't let them convince you otherwise. Also, the biopsy, BEFORE she goes in, make sure that they take a minimum of four biopsies. Celiac is often patchy and easily missed. Also make sure they di an endoscopy, NOT a colonoscopy. (lot of really dumb GIs out there!)


  8. I love topics like this. Especially love the gluten-free guitars. If there is music going into my ears it must be gluten free  :D

     

    I was at a restaurant once, asking if a certain dish is gluten free. Says the waiter, "It should be gluten free. I've eaten it a bunch of times and have never tasted gluten." Says the voice inside my head, "Get me another waiter....."

     

     

    I especially love the, "Oh yes, I'm gluten free as well," comment as they take a big bite of bread or chicken smothered in a gluten-filled sauce. 

    Of course you can taste gluten! It is called DELICIOUSNESS. Gives it away every time for me. As in, "Wow, these enchiladas are soooo good I cant believe these are corn tortillas!" They weren't. Three days in the hospital, months of pain afterwards. Something being delicious makes me highly suspicious now.


  9. I had this glorious dream yesterday morning... I went into a pizzeria, the kind with the big wood-fired ovens and concrete floors (stems from a conversation I had w/ a local chef who is opening a wood-fired grill). I could smell the pizzas. A man came up and asked to take my order, I said, sadly, "I can't have pizza". He looked sad, and asked why, so I told him. He said, "no problem. I can make it". He proceeded to go to a shiny metal table and scrub it clean, taking out all new bowls and mixing up the dough. He carefully arranged all the ingredients on the top. He was in the midst of putting it in the oven when my husband woke me up...

     

    Damn it. I really wanted to try that pizza.

    LOL,. I frequently have dreams where my celiac miraculously just "went away" and so I dig right into a delicious donut...I really miss real donuts. The gluten-free ones are just...meh. I always wake up so disappointed!


  10. I had undiagnosed celiac for 30+ years, was horribly ill. But all but one of my blood tests came up negative, and the only positive one was positive by ONE point. That is it. Had to beg for a biopsy. The damage was so visibly bad I was diagnosed on the spot, even before the biopsy came back. GI said it was obvious I had had it for many years. So, yes. You most definitely could have it. Blood tests catch about 75% of celiacs.

    Left side pain is fairly common...can be from trapped gas or stool, and that can cause major pain. Can also be something more serious like diverticulitis. But your dr probably would have caught the last one.


  11. Hello to all - I'm at my wits end with whatever is causing me to feel like luke-warm death.

     

    In November (ironically right after my husband's gallbladder surgery) I began to feel weird pains under my left rib, they also occur on my left side and in the left side of my back - at the same time, my stools began to change - from normal to always loose and either yellow to dark green (and I can't correlate with anything I eat)

     

    It's just bizarre. 

     

    Now after I eat, I run to the bathroom within a few hours - and my stomach noises are insane.

     

    In the past year out of the blue I developed hashimotos thyroid. I hear this relates to celiac sometimes.

     

    I've always (as in my whole life) been gassy and bloaty. I also have a history of Cdiff.

     

    I ran to my GI doc who did a CT scan (which shows some fat in my liver but pancreas was okay which was what I was worried about) and he also did a endoscope where he said everything looks "really irritated and inflamed" - he took some biopsies but I don't get those results until Jan 26th... they said they'd call earlier if they found anything - I was hoping the celiac biopsy would be positive since the blood tests were negative.

     

    Dec 08, 2014 Immunoglobulin A 209 MG/DL 71-263   Dec 08, 2014 Tissue Transglutaminase IgA Ab 5 UNITS 0-19   Dec 08, 2014 Anti-Gliadin IgG Ab Deaminated 3 UNITS 0-19   Dec 08, 2014 Anti-Gliadin IgA Ab Deaminated 7 UNITS 0-19

     

     

    My lipase is also really really low (some googling said maybe it could relate to celiac but I can't get a good measure on that.

    Dec 04, 2014 Lipase 7 IU/L 15-60 L

     

    I can't really correlate any of this to anything I eat - in fact, the pain is there off and on whether I eat or starve, regardless of what I eat from salad to pizza to ice.

     

    Has anyone had both blood tests and biopsy come up normal and still have proven celiac disease?

    I've read the forums and it seems like all of these symptoms jive with celiac but it also appears that everyone's symptoms are different and frankly, I'm getting no where with my doctor and I'm tired of being in pain - more than anything, every time the small dot of pain occurs (it's not a crampy pain but more like being poked with a hot poker) it frustrates me and sends me in to a small depression...

     

    I would love ANY feedback from anyone who could shed some light on what else I can do or if the pain I'm experiencing sounds like the pain you've had.

     

    Thank you! I feel really alone.

    I had undiagnosed celiac for 30+ years, was horribly ill. But all but one of my blood tests came up negative, and the only positive one was positive by ONE point. That is it. Had to beg for a biopsy. The damage was so visibly bad I was diagnosed on the spot, even before the biopsy came back. GI said it was obvious I had had it for many years. So, yes. You most definitely could have it. Blood tests catch about 75% of celiacs.


  12. i know my smaller sibling doesnt have the same thing.. mine i think came from my dads side. my lil sister dont hav it cause she never has complained of her stomach hurting. i was always having stomach problems and always throwing up, so i finally went and got checked. and they diagnosed me with it. but i will suggest going to get her checked also.. i didnt think nothing of her having a chance of having it but i will get my mom to set us both a appointment, i would hate if she went through the same things.. but i need to go get checked again. cause it doesnt really bother me to eat bread. every once in a while itll make me feel sick but i just take meds to help. other than that i try and my mom helps out.

    Your sister not having stomach issues doesn't mean a thing. There are over 300 symptoms of celiac...and you can have all or none of them and still have it. As for you, even if you don't feel very sick after eating it, you are still doing as much damage as someone who ends up barfing for three days straight because they used the same toaster that is used for the regular bread. "Getting checked again" is pointless. If you have been even sort of gluten free, there is a good chance your tests will come back negative. That doesn't mean you don't have it- it means that there are no active antibodies showing up. If you were diagnosed as having celiac, then you still have it now, and you will have it until the day you die. And if your doctor tells you different then he is an uneducated moron, find a new one.


  13. I was at someone's house over the holidays and they were telling me how they had had a celiac over for Xmas dinner and he ate the stuffing and turkey because "it looked too good to pass up.  Now thanks to him our friends don't take the diet as seriously - I felt the mental eye rolls when I wouldn't eat the rice crackers that were mixed in with the regular crackers. 

     

    I know people don't think of it at the time, but cheating really does make the (strict) gluten-free into the joke the media portrays it as.

    YES! And it really makes me @$%^*$^&*#^$% angry too! If they must cheat, then I wish they would stop telling people they have celiac disease.


  14. I was asymptomatic prior to Dx, so my will power does fail me from time to time. Last week I was at a football game and incredibly hungry. Of course stadium food is the worst so I caved and at a piece of pizza. Then, this past weekend I ate one of my mom's homemade flour tortillas (they are the #1 thing I miss the most).

     

    Both times I did wind up having some stomach cramping. I consider myself incredibly fortunate because that's ALL I had. Of course, now, my willpower is in check for the upcoming holiday challenge!

     So you not only cheat, but you do it in public? That is why the rest of us have waiters that don't take us seriously, friends that say, "So and So can eat a little and it doesn't hurt them'" and family members who roll their eyes at us when the restaurant choice for a family dinner is limited to ones that the four celiacs in my family can actually eat at. So instead of thinking you need more will power, how about thinking of the responsibility you owe to the rest of us? It is easy to subject yourself to the consequences, especially when they aren't horribly painful and immediate. But it is entirely another to go, "Sure, I will eat that flour tortilla just this once, " when you think about that little kid who ends up hospitalized because of your indiscretion. If you are going to cheat, please stop telling people you are gluten free.


  15. It would probably be a lot easier if I felt ill eating gluten, but as I don't notice any difference its difficult to get used to. Every hour Im thinking of more and more things I can't eat. Yes its easy to say focus on the things you can, and I know those desires and cravings will go away but its still a loss........places we can't go anymore, favorite treats & places to eat out. I understand gluten is a poison to me, as is sugar. Getting off sugar is very difficult too. Trying to get off both will take time, and extra planning. I know in the long run it will be easier, but it will mean a lot of planning and a lot of will power resisting donuts and pizzas at staff meetings and the like. Im sure its a lot easier if you get sick right after eating stuff like that, but I never had. The only reason I was tested is because my son was diagnosed, so its quite a mind frick. I've literally had nightmares about it the last 2 nights.........

     

    Felix

    "The only reason I was dx was because my son was..." That is your reason. He has to go through the rest of his life not eating gluten, and you would never, ever put him at risk I am sure. But kids do what they see. If you swear, they swear. If you smoke, they smoke. And if you cheat, you can bet he will too. His life is very literally in your hands, cuz it is on your fork.


  16. People ask me this occasionally and the answer is always, "No."  I have not knowingly ingested gluten in the last 4-5 years. 

     

    Of course there are plenty of things I would love to eat.  Strangely, Pizza Hut pan pizza is near the top of the list, since most gluten-free pizzas are just thin crust.  I want that oily, chewy crust that holds up to being reheated later.  Mmm.  And pie!  You rarely find gluten free pie or cheesecake, or things that are mostly gluten free except for the pesky crust. 

     

    But it's not worth intestinal bleeding.  I spent nearly 20 years of my life being sicker than sick, and cutting out gluten was the magic spell that solved my intestinal bleeding problems.  Only you can decide if "cheating" is worth the pain.  For me it isn't.  At all. 

    I have found a pretty close second to Pizza Hut pan pizza (because I hear ya! Thin crust isn't the same!) Chebe cheese bread mix (Which you can actually make yourself with tapioca flour and tapioca starch much cheaper and if you aren't lazy.) Anyway, two boxes makes a ROCKING large pan pizza with a delicious chewy crust that just gets better with re-heating. I have even made it into a stuffed crust one time. (Not as pretty as Pizza Hut's, but just as good!)


  17. ... thanks guys for cheering me up!!! I have just been travelling over Christmas and New Year and although I have now been gluten free for a year - I still believe in the "good nature" of restaurant staff and give in to eating my steak and salad as usual (because this is the only thing I feel is safe to eat that I have not cooked myself) and feel annoyed that yet again I end up with a sore tummy!!! I just don't seem to learn. It already took me a couple of months to learn to read labels first and then eat...

     

    However, this Christmas I did break my NO GLUTEN rule when I went to meet some friends I hadn't seen in 20 years in a restaurant- as usual I asked for my steak and salad- and although the waiter said they had cooked everything separately, everything appeared together on the same plate, together with the chips-that I knew were contaminated, because I had asked about the oil beforehand. With all the Christmas goodies I had not been able to eat and a bit upset for personal reasons- I was weak and thought s**** it! and ate 4 potato chips- Not only did I get told off by the waiter who had gone through so much trouble... haha - and as a punishment I also had a sore tummy for the next few days and constant D!! Still recovering now... I will certainly remember next time!!! 

     What you did, regardless of the situation and how you felt (Because believe me, we have ALL been there) makes life for the rest of us REALLY hard. One waiter that has seen you blow it off after he worked hard, means that same waiter probably wont try as hard, or at all, for the next celiac that comes in. Now, you know what you did was wrong, and you know why...so it isn't fair of me to be mad. But, now that you know...never, ever, ever again! Ever! because you don't just have a responsibility to yourself, you have a responsibility to the entire celiac community, whose lives and well being DEPEND on people taking it seriously.


  18. I figured out that I probably have celiac at the beginning of the year. I am undiagnosed, my blood test came back negative (I had already been gluten free for a week.. I don't know if that's long enough to affect anything) and my doctor never sent me in for a biopsy. Since going gluten free.. nearly all of my problems have resolved. I had missed so much school (I'm 18) due to just plain feeling unwell.. stomach aches, nausea, migraines, general fatigue.. and no fever. It was the same thing every time.. as well as a whole array of other things in general. I am convinced that I have celiac disease (it runs in my family too) and will probably never go back to eating gluten.

     

    That being said... Do you ever just have ONE day where you NEED to eat that amazing looking cake? I have never deliberately eaten anything containing gluten since going gluten free. I did accidentally consume a microscopic amount at a restaurant yesterday though.. I think.. because I've been feeling sort of unwell, stomach achey, and sleepy all day. If a tiny amount of gluten does that to me.. would I be violently ill if I were to eat.. say.. a bowl of actual pasta? 

     

    There is this one dessert at California Pizza Kitchen that I want to have again.. at least one more time in my life. Butter cake. Or... I would love to have Bertucci's alfredo... or hell, I'd like to be able to go out to dinner with people one night and not even think about what I'm ordering and if the kitchen is safe and if that item listed as gluten free is REALLY gluten free or not! 

     

    Has anyone ever caved since going gluten free? What did you eat? How sick did you feel the next day? Was it worth it?

    I fantasize...but no, I don't cheat. Here is why- right now, you feel unwell from eating gluten. The longer you are off it though, the immune response will become stronger. That doesn't mean the disease is worse, it means your immune system has healed enough to launch a full out WAR against gluten, as opposed to just throwing snowballs.  For me, a few months in, I cheated- once. I thought, at the beginning of the diet, that I could now and then, if I really wanted to, because I didn't always get noticeably ill right away from eating it before. Big, big, big mistake. So horribly violently ill I wanted to DIE. You don't want to go there, trust me. Plus, you will get accidentally glutened many times, by restaurants, well meaning friends, or even your own carelessness. Every single time your immune system is exposed to gluten, it will respond, and that response will take MONTHS to shut down again. Months.

     

    Now, you are in the unfortunate position of not knowing 100% that you have it- and that makes it tough because it is easy to say, "I don't even know if I have celiac, so does it really even matter?" Plus, if you have felt good for awhile, you may forget just how bad you felt before. So...my advice is to start eating gluten again, right now. Go load up and get back to the doctor and INSIST on more tests. Very few doctors will run a complete celiac panel, and most don't even know what it is, but you can find the whole list on this sites. Most drs run one or two tests, but there are SIX, and you can have celiac and only have one of them be positive. You can still have celiac and NONE of them will be positive. Blood work is extremely accurate as far as not having false negatives- if the tests say you have it, then you almost definitely have it. (But most drs don't know that because the testing used to be inaccurate a lot- tests have improved) But, FALSE negatives are very common. The tests catch about 75% of cases, the rest fall through the cracks. So if you get all the labs done, and it is still negative, then INSIST on a biopsy. (Endoscopy, not colonoscopy- believe it or not a lot of docs think you test for it by colonoscopy, but celiac  affects the UPPER intestines and duodenum, NOT the colon.) And INSIST they take a minimum of four samples because celiac is often patchy and easily missed. Then, if the biopsy is still negative, you can probably safely say you don't have celiac. Not 100%, but most likely. Then you make the decision if you are going to keep doing this-and only you can decide that. You don't have to have celiac to have a very serious response to gluten- as many here will attest to. Some people's bodies just do NOT like gluten, no matter what the tests say.

     

    To have accurate test results, you have to be eating gluten- lots and lots of it. And if you stop eating it, even for a short while, those antibody levels can drop too far to be detected in blood work, and your intestinal villi can heal fast enough that there isn't visible damage. So, go get that butter cake, maybe two slices...and anything else you know you will miss dearly (FYI...pretty easy to make gluten-free cakes that taste identical- bread, donuts, croissants and egg rolls...not so much. Choose wisely.) And then get tested again. Do as much as you can to eliminate uncertainty, because without certainty, this diet is really, really, really hard to stick to 100%. You have to KNOW you can't cheat, or you most likely will.


  19. oh no, your misunderstanding.. my mom tries to help yeah but i cant seem to follow mt correct diet mtyself. and my mom would take care of me if any of those things came up. although im allergic to all antibiotics.. lol but um, she takes care of anything thats wrong.. and i take meds for it.. i think its called digestive advantage.. but lately i have not been wanting to take it cause eating bread and not taking the meds, i go to the restroom pretty normal.. i jst want advice on how to avoid it all. it has nothing to do with my parents cause she does help me.

     

    Digestive advantage is NOT medicine, and does not in ANY way make it safe for you to eat gluten! It is simply something that may mean you get less gassy, maybe wont get diarrhea or vomit. But nothing in this WORLD can stop your immune system from devouring your own intestines, other than NOT EATING GLUTEN.


  20. Everyone here knows exactly what you are going through, thus everyone is being very supportive, which is great. But you need to also be told the cold, hard, very unpleasant truth- which is that it is time to take responsibility for your own health. How serious is what you are doing? Serious enough that your parents could lose custody of you for not enforcing the diet. They are screwing up big time, and they need to know it. Maybe it isn't their fault, you probably have a crap doctor who didn't explain the seriousness of the disease to them- not uncommon. Most doctors are very ill-informed. But letting you get away with eating gluten is akin to putting a gun to your head. Just because you don't go into anaphylactic shock right away, as with a peanut allergy, doesn't mean it isn't just as dangerous. And as someone else mentioned, if you don't die, you will wish you had. Celiac doesn't go away, and it doesn't get better. It destroys and it kills and for you to care more about a slice of pizza than your own life is really, really, really incredibly, impossibly, ridiculously stupid. Yes, it is HARD to have every social situation be awkward and inconvenient. You won't find anyone on here who tells you it isn't. We sit through work dinners where people wave pizza in our face and say "Just have a bite." We go to wedding receptions and drink a glass of water and maybe have a plain salad while everyone else is having wine, prime rib and wedding cake. When we go out with our friends and everyone says, "Hey, let's go get Italian!" we have a choice of speaking up and asking everyone to make their plans around US, or saying nothing and watching everyone else dig in. When we do go to restaurants with gluten free food, we have to grill every cook and server and pray they don't accidentally or intentionally gluten us. And we see the eye rolls when we say we have to be gluten free- and it hurts. Celiac sucks and it isn't fair. not one bit. But either is cancer. Or diabetes. Or multiple sclerosis. or lupus. Or having to have your intestines cut out because you couldn't resist a slice of pizza when you were a teenager, so now you have to wear a colostomy bag. In case you don't know what that is, it is a bag that holds your own poop. Great for the social life- "Sure I will come to the party. You don't mind that I have a sack of feces with me, right?" Well dear, if you keep doing what you are doing, life is going to get a whole lot more unfair than it is now, because you have all of those things and MORE in your future. Am I being mean? No. Am I trying to scare you? You bet I am. I want to save your life. I am telling you the same thing I told my own kids when they were diagnosed at 6 and 10. You don't get a choice in this. You don't get to talk yourself into cheating. you don't get to make excuses for why you can't do it. You don't get to say it is too hard. It isn't an option. You do it or you die. Plain and simple.

     

    Gluten is just FOOD. It isn't your life. Your life is about being 13 and having decades ahead of you to enjoy. Your life is your friends and your family now, and the ones you will have in the future. Your life is that you will probably have the chance to look into the face of your own beautiful child someday- unless you keep eating gluten. celiac kills fertility, and it causes miscarriages. Not always, but enough that you should be worried. And once the damage is done- it is done. Do you want to tell your brand new husband one day that you gave up the chance to have children because you wanted pizza more? I doubt it.

     

    Your parents aren't doing their job- they are failing YOU. But, you aren't a little kid- if they wont take responsibility, then you HAVE to. Show them these posts. Ask them to lurk around this forum and read the horror stories from people like me who spent most of their lives undiagnosed and suffered dearly for it. They need to understand, and most importantly YOU need to understand, that this is life or death. For you, this is not a "diet." This is medication, and you have to take it for the rest of your life. It isn't going away and it is unlikely they will ever develop an actual cure. So, it is time you accept it. You are celiac- now own it.There is a forum for teenagers here- spend some time there- you aren't alone. Please, read as much as you can about celiac. To succeed at this, you must be knowledgeable. You can't just buy gluten-free products at the store and think you are good. You have to learn about cross contamination, how to keep your home safe, and how to stay safe when you aren't at home. A crumb so small you can't even see it, is all it takes for your immune system to decide to start ripping up your intestines- whether you feel it or not. 

     

    Now, before you get completely depressed, I can say with all honesty, it will get easier. After the first few weeks, the cravings will let up. You will still fantasize about eating a real donut from time to time- but it wont be the torture it is now. You will learn what you can and can't have, and you will learn how to plan ahead. You will learn to make gluten free cake that your friends will beg you for. You will learn that even though gluten free pizza is never going to be regular pizza, it can still be pretty darn good. Most importantly, you will learn that once YOU start taking it seriously, your friends and family will too. Your real friends will make special effort for you, like making sure they have gluten free snacks at their parties, asking ahead of time about what restaurants you can eat at, and even making special gluten free things for you. Because they care, just like you would care about one of them if they had a serious disease. So no more can't. Only MUST, from here on out.