Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

ryebaby0

Advanced Members
  • Content Count

    502
  • Joined

  • Last visited

1 Follower

About ryebaby0

  • Rank
    Star Contributor

  1. If only there were a way to make teens compliant :)

    If you make a bunch of punishments, she will just learn to become a really convincing liar. You want to model adherance at home, and wherever you go with her. What she does when you are not with her is truly out of your control, and you need to accept that. You can have teacher's help, and if she is deliberately eating wrong, curtail her activities "Im so sorry, but you seem like you aren't being careful with your diet, and that's important. So important that I am not comfortable with you at....." Teens want autonomy and are willing to do almost anything to get it.


  2. 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!


  3. 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 :)


  4. Canker sores are often a folate deficiency. He should be taking a multivitamin. If his tTg levels are still positive, he's still getting gluten, that's pretty much it! I would limit his diet to something really pedestrian -- rice and chicken comes to mind --- and do that until the diarrhea stops. I know that seems drastic (it's what we had to do) but it is helpful to find out where it's coming from. Your instinct is that this is alarming, and it is. He should be getting better, and he's not. There's gluten in him, from somewhere. List everything he eats for a whole day, and post it. We'll look at it!! You're avoiding wheat, barley, oats and rye, right? All variations of wheat, right?

    .

    Another, unlikely possibility, is that something else is wrong. There is something called autoimmune enteropathy, which is a rare dysfunction that looks like celiac disease but doesn't respond to a gluten-free diet. (My son has it, along with true celiac disease). Chances are that's not what's going on. More likely, he's got playdough, or sunscreen, or your lipstick, or the paper towel roll (that first and last towel are held on the tube by wheat paste! Who knew!) or something obvious yet weird.

    I would stick with the nuts, veggies, whole foods you list. The "processed on the same line as.." statement I find, personally, useless. I think many companies are just covering their butts from litigation and there's no real issue to worry about. We've only rarely avoided items with that as the only concern. Some notable exceptions can be found in the threads about specific items. Always call and doublecheck --- even here at celiac.com, people are sometimes wrong, or overly cautious when there is no reason to be. Make up your own mind.


  5. We did this twice this summer: one wedding was tiny, with a small reception and we just brought food and ate the fruit there because the "caterer" was a bunch of aunts and they wouldn't have been able to do anything. At a wedding in our own city, my son was a date and stopped at home on the way to the reception (while his date was taking bridal party pics) to eat something. His RSVP card indicated as his choice of entree "will eat gluten-free at home" so they didn't pay for the food. The mother of the bride bought him a gluten-free cake at Wegman's and had it at his seat. My niece will be married in a few months and already contacted us about what we wanted so she would tell the caterer (who she had already cleared as knowledgable about gluten-free food).

    It just depends on how well you know the bride. In your case, I would call her, say "I need to talk to you about the reception. We're really looking forward to it but since we need special food I thought I would contact the caterer and save you the trouble of dealing with all that. Is that okay with you? " and see what she says. Technically, it's her job to do that but honestly, does she know enough to do it right?

    And as always, bring something to eat anyway. Life is full of screw ups!


  6. Firstly --- it WILL get better. The reaction to a smudge of gluten may not change, but your ability and his to navigate a gluten free life most absolutely, definitely will.

    Secondly --- we've all been through detective school, trying to figure out where some gluten was picked up. I think that first 12-18 months I was the most paranoid mother on the planet. But I don't want a paranoid kid, and I don't want his life to be consumed (ha!) by food. So I gave up the paranoia (which is mom's security blanket) and farmed out a great deal of the detective work to him over time. You will feel more secure, and so will he, in time.

    Thirdly ---- My son limped. He staggered. He couldn't sleep, he couldn't eat. At 4, we refused an endoscopy because it seemed too scary and invasive for him. I wondered if that would have avoided missing a year of school, a 44 day hospitalization, and all Those Bad Things That Happened. I know you carry guilt about not keeping TBTTH away from your child, but in the end, you triumphed. You kept at it. You perservered and ultimately got answers and you will keep doing that as you journey with your child, and he will learn what that looks like and be a very independant, strong, and determined person -- moreso than without the diagnosis.

    Don't feel guilt. Don't feel pity. Don't look back. You'll feel sorrow and grief and anger, and let 90% of them go only when you are ready to. (I still can't see soup crackers -- a food we fed him prior to dx but when he was so sick --- without a pang) The journey is forward, and the road can be lovely. You and your child will travel together and learn so much about yourselves, and that is not a Bad Thing. We have all been there, and we are up here around the bend, enjoying the view. I am confident that you'll be here too.


  7. I don't think any reputable pediatrician will speak to you about her situation, since you are not the parent and HIPA laws would keep them from discussing your gdd as a patient. Not to mention it is likely to really annoy the other adults involved.

    I think the idea you want to convey is that it would be good to know if she is celiac, it would be useful to know that sooner rather than later, and it would be easier to live their lives with full information rather than not. However, you can't make those decisions. We all wish you could, she certainly sounds like a candidate for testing, but it won't ever be up to you. I would keep lines of communication open and be a kind, listening ear: if your gdd really is celiac, that's going to become more and more apparent, and you don't want your son to avoid the diagnosis in order to avoid you being right all along.

    And tell him this, if you'd like ---- my son was ready for an endoscopy at 4, and we decided we were overreacting and cancelled it. By age 9, he was hospitalized for 2 months, convalescing for 6, because he was undiagnosed when we had the chance.


  8. I would have him biopsied. Yes, it could be falsely negative but that is not the majority of experiences. If he is scoped at a reputable facility that deals with children, truly it will be harder on you than on him. (My son is 17, and was scoped 8 times between 8-15 yrs.) But you can't make medical decision for his future based on general impressions. If something else is wrong (the gluten-free diet doesn't work, for example, to improve his health) he'll need to be scoped ANYWAY, and you've let all that time go by. Personal experience speaking, here!

    If you decide on the endoscopy, come back and we'll all give you advice/stories about our experiences.


  9. As I write, my 17 y.o. son is making three scrambled eggs with 4T of butter and 2T of cream to go with his 2 cup glass of whole milk. His typical breakfast. We go through a half gallon of ice cream every three days. He eats bacon regularly. Cheese is good too. He has a basket of chocolate in his room to eat all day. We added avocados in desperation to reach his caloric needs, but he is still a slender 40th percentile weight. My point being, you should be so lucky as to worry about her weight or her cholesterol at this point! We do try to do the calorie loading with fats, not sugars, since celiacs often develop diabetes and who needs that, but his GI and dietician agreed that calories -- in whatever form -- are what he needs most. Ice cream is your friend, right now :)


  10. I have no qualifying statement or uplifting quote for you -- yes, yes, YES! We try to laugh about it, how all I do is cook, and all he does is dishes (that's how it works here, I get 'em dirty, he cleans up). For people who have a life that can't be about the food --- we spend what seems like ALL @#$%# day in the kitchen!! And yes, I like to cook. But really, some times it's just ridiculous.


  11. I know I'm just repeating everyone else, but this is a hot button issue for me. The rule at our house is "Our house, our food". It's not like you are contemplating feeding your guests rocks or sticks. Everywhere your daughter (my son/husband) goes, she has to make accomodations. She has to forebear. She has to smile politely and say "no, thanks" and "it's okay, i don't mind". Clueless but kind people will "know" there's no gluten/egg/whatever in the food they made, and you'll have to teach her to choose between how she feels in that moment, and how she'll feel later.

    So there's only SAFE food at our house parties. And we have lots of them. With lots of people. Lots of teens (my son was dx @9; he's now almost 18). He never has to worry about what's in the bowl, who ate it, ANYthing.

    The great part? The unexpected part? Because we only have safe food at our house, his friends have learned what he can eat. At their parties, they remember, and include his food. At his trips, chaperones informed by his friends include his food. His girlfriend's mom has stickers that say "Patrick first" to put on unopened bags of chips.

    If your guests are so unspeakably rude as to comment on the food, I say go ahead and feed them rocks and sticks. Have a great party!


  12. I think if you are really curious about what CHOP would say, you should go. That being said, you may have to wait months to be seen, spend a lot of time having records copied (and you should send them to CHOP yourself)etc....it's not as simple as it seems in articles :) They are also likely to want to know, specifically, why you want a second opinion. Are you looking for better treatment? Different? A different diagnosis? Would you be willing to keep seeing doctors there, instead of Cinci? Will your insurance cover a second opinion? Does your current doctor need to sign off on it? (And will they take you BACK if you go there?)

    Just some stuff to think about. We got a second from Johns Hopkins, but Pgh wasn't very happy about it at the time. Even so, I think it's worth the work and money and all that if you need/want the assurance that she's getting the best care, especially if her case is complicated. You never know what other doctors might think. CHOP is an outstanding facility.


  13. Hmm...my celiac who is not trying to gain weight had:

    Breakfast: Rice chex and milk

    Lunch: Leftover porcupine meatballs, banana, blueberry coffeecake

    Dinner: cheese pizza and water

    I am not a celiac, but I eat a lot like one ;) I had:

    Breakfast: banana and soy milk

    Lunch: turkey and cucumber (the two ingredients, chopped up together)

    Dinner: 4 Little Caesar's cheesy breads (an indulgence since tomorrow is my bday. Last night they had scalloped potatoes, cheesy broccoli and porcupine meatballs and I had greek yogurt with a T of walnuts and some blueberries)

    Snack: cantelope

    Our [celiac] son is 17, and trying to gain some weight. He ate everything that wasn't tied down, as always. Snacks on avocados, ice cream,Hershey bars,cookies ; ice cream shakes and scrambled eggs with cheese for breakfast, M&Ms, cheese sticks, yogurt, power bars, nutella sandwiches, peanut butter and bagels, leftovers for lunch.

    I struggle with overeating issues, but have found the Inside Out Weight loss podcasts really helpful. Not an endorsement or spam, just another place to look for support.


  14. For those of us in Central PA, you might be interested in a Kickstarter project that is aiming for a mobile gluten free bakery! It seems like a nifty idea, but you can check it out for yourselves at

    https://www.kickstarter.com/projects/louisathelast/bell-and-whistles-mobile-kitchen

    I have no stake in the project, nor do I know the people involved. (Which is odd -- you know how gluten-free people in small cities know each other!!) But I thought it was cool


  15. Same here Ravenwoodglass. Sounds to me like Mr JustforJen is in denial and doesn't want to give up his gluten so he's hoping she doesn't have it or can cheat. shaking head. oh the games we play in our minds.

    (Well, that's not a very nice welcome-to-the-board..I think most people here have gone through relief/horror/denial/grief/coping/happiness cycles in their health journey. Everyone likes to be sure before they embark)

    My son gradually became desperately ill and diagnosed as a result -- probably had been celiac for 6-7 years. Looking back, we realize the signs we missed, or attributed to other things. My husband was tested as a result of my son's hospitalization; he had no serious symptoms BUT both his grandparents died of colon cancer. He feels much, much, stronger, healthier, and well on a gluten free diet. The point being that there are no "typical" celiac symptoms, as with other autoimmune diseases there's just this pile of "possible" symptoms and your mileage may vary.

    Don't panic, JustForJen. You can do this -- both of you. I am also the not-celiac spouse and I know the search for certainty can be consuming.


  16. You've gotten more specifics than your head can probably hold, so here is my family's (2 celiacs, 2 not, a partially gluten-free house; 8 years now)advice in generalities:

    1. embrace the change.

    2. prepare to have grieving moments

    3. allow your son to be mad, but don't pity him

    4. be adventurous -- one person's "we hated this" could be your favorite food. Try lots of things, and give yourselves permission to throw stuff out if it's yucky

    5. find a cookbook you like. (see number #4 -- one that YOU like)

    6. at the beginning, it is useful to make a list of things you want to find gluten-free versions of, and concentrate on those. Makes you feel like you're getting somewhere

    7. don't panic - you CAN DO THIS

    8. take all advice -- from stores, this board, articles -- with a grain of salt. Some people are militantly gluten-free, some less so, some not really paying attention. This is your life. Find a way that suits you.

    Good luck! Believe it or not, in about a year you will find it simple, and wonder why you worried. Really, you will!!


  17. I wouldn't associate outbursts at school with much, apart from being there :) Seriously, if he was undiagnosed, he's behind in his "nutrient balance" and can't catch up without a supplement, for now. He's running a race he started late, so to speak. He should take a multi, and probably be prescribed enough zinc and vitamin D, too. Both of those latter supplements were prescribed for my son when he was released from inpatient care (there 45 days) and he took them for 5-6 months.


  18. I'm not sure what you mean by range (I'm very new to this) but they said 0-5 is normal, 5-8 is intermediate, and anything higher than 8 is high. I guess what I'm asking is, if they suggest you do the biopsy, are they already pretty sure you have celiac and they're just double checking? How often do people do the biopsy and get told they don't have celiac? Thank you in advance for any replies.

    If you look at your lab report (always get a copy for yourself), there should be a range listed. A biopsy can always be falsely negative (say you aren't celiac, when you are) because a biopsy is just bitsy snippets from places the GI deems likely choices. It's not like hitting a mark on the pavement, more like throwing a dart at a board. Most GIs are not going to do a biopsy without a positive test. Some people never get a biopsy, having positive symptom change on a gluten-free diet. My husband's tTg was "borderline" but he was clearly much better on a gluten-free diet (after the bloodtest) so he stayed on it. Never biopsied. Our son's tTg was 145 and he was biopsied in order to rule out other complications. In the end, the definitive diagnosis is a positive blood test and/or biopsy, AND a positive reaction to a gluten-free diet.


  19. Ask your doctor about autoimmune enteropathy. My son is celiac and has AE, which is very rare, but presented in his case as refractory sprue. (Docs at Johns Hopkins don't believe there is any such thing, btw). He was started on prednisone, TPN (total parental nutrition -- a nasogastric tube feeding) and weaned onto ProGraf, a strong immunsuppressant usually used w/ transplant patients to prevent graft rejection. I am certainly no doctor, and yours sounds on top of things. His symptoms were continuing weight loss, diarrhea, despite being on a strictly controlled diet. He transitioned from a gluten-free diet to just rice and olive oil, then gradually transitioned back to a conventional gluten-free diet. He is still on Prograf, and always will be. There are distinct markers of AE that a biopsy (endoscopy) can find.

    My main point is keep listening to yourself, and advocating, and not taking "it hasn't been long enough" for an answer. Best of luck to you ~


  20. I completely agree with the other comments. We've been married 26 yrs, husband/son celiac for 6. While I am as supportive as can be, it does sometimes hit me that we will never have the life we expected. People who say "oh, but you can bring your food, etc., " are missing the point. My DH gave me a Xmas gift last year of a 3-day trip with my Mom/niece to a treasured destination. I felt really guilty about going without him, but he persisted. "You go" he said "without worrying about my food, about the restaurant, about the hotplate or microwave. You go, and don't cook once. It's okay, I understand this is hard for you too". Spouses need to grieve, need to vent, need to feel like they are part of the diagnosis too.

    You are always tired. We get that. Understand that when you say that to her, she may be hearing "I will always be tired, and too tired to do anything you want to do. Ever again. And you are a bad, bad person for thinking what you'd LIKE to do is more important than my health". How can she top your health? She can't -- so you have to extend yourself to her, even in a small way. After the elation and relief of a diagnosis, the joy wears off and the work of creating your new life begins --- it won't happen on it's own.


  21. If you are traveling to a PSU game, ndulge cupcake boutique in State College now has Gluten-Free Saturdays once a month, which will soon change to twice a month. Go to their website so you can order ahead (or get put on the mailing list). We had 6 of them last weekend and they were great -- chocolate and pumpkin were super; vanilla only okay (but I don't like vanilla anyway). They do a super clean on Friday night after closing, clean again Sat am and bake the gluten-free orders first; those are boxed, wrapped in cellophane and stored for pickup before the mainstream ingredients are taken out. The next gluten-free day will be Nov. 13


  22. My son was dx with RA by his pediatrician, and that dx was confirmed by a peds rheumy.(Although she thought some of his numbers were inconclusive, but his symptoms were severe so she started prednisone anyway) Hands, knees, ankles were the worst, it was the pronounced limp and inability to run (he was 9)that first sent us to the doctor. He had pain at night, and his fingers also started to distort.

    Several weeks later he was dx with celiac. While his gi symptoms did not relent once GI, his RA symptoms disappeared completely in about a month and have never returned. So yes, it's possible to be misdiagnosed with RA, and skips the NSAIDS. It is also true that autoimmune disorders can "come in groups" .