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Everything posted by teresasupermom

  1. I agree with the others. I would have the blood test done to screen for it. If it comes negative you can always do a gluten challenge to see if she's intolerant to gluten, but if it's positive it will be easier to get accommodations and such at school. For me there were just a ton of reasons to formerly test. I have also had most of my other kids screened since they are higher risk. (So you know your feelings sound just like mine. I felt like such a jerk. I used to tell my dd "Your stomach always hurts" when she'd complain. She would always complain about it during times when she didn't want to do things. I thought she was trying to get out of things. Then one day I told her the next time she complained we were going to the doctors because this was getting to be too much. I'm so glad I took her in.)
  2. Has she had her antibody levels rechecked? Our GI doc has been checking every 3 months to see that they go down. To our surprise my dd's levels initially went down, but have steadily been going up. We have had to really change things more than I thought and are still trying to pinpoint all the sources of glutening. We've found a few things in the past couple months that I've realized even though they were gluten-free have been contaminated. We also finally switched our whole house over to gluten-free which has been challenging. I guess I would want to recheck her antibodies and see if she's being inadvertently exposed to gluten. You could be missing things. (We've been at this a little over a year too.)
  3. We are going through similar problems with my dd. Her antibody levels have progressively gone up her last 3 checks in spite of us being stricter and stricter with things. We at first were only having her meals gluten free, and then the whole house has gone gluten free. I would start looking at that. For us I believe her primary problems have been cross contamination. You may be missing things there. Do you go out to eat at all? Are there other people around you that you live with that still eat gluten?
  4. I have 2 kids with type 1 diabetes and 1 child with celiac disease. None have both. We just follow the same meal plan for everyone. I also am an identical twin myself so I've read up a little on this. Your other twin is definitely very high risk for getting both type 1 diabetes and/or celiac disease. My other non celiac kids do eat gluten at school, but not at home. My kids had a really hard time at first. I think the best advice is to not start with gluten free pasta & breads and stick with naturally gluten free foods at first. Ease into the gluten free substitutions.
  5. Yes, we've found a couple places that she has been being exposed to gluten still so we're still working on this. She's getting contaminated out of the home I think, but still working on pinpointing all the sources. It's very frustrating.
  6. teresasupermom

    Breakfast Restaurants...

    Those test strips are too expensive for that. I am only testing things that we eat regularly that I am suspicious of. My family goes out to this restaurant every week and my husband was not convinced that it was contaminated. Since we haven't been able to pinpoint the source of why my dd's antibody levels were still up I ordered 5 test strips to test a few things. I tested this restaurant since we go there every week. I tested a pizza restaurant that is supposed to be gluten free (it came back fine)and I plan to test my sister in law who also cooks for my dd that I am suspicious of contamination as well. It is not necessarily ruling foods in for us, but it is ruling foods out if that makes sense. I will likely order more test strips, but they are real pricey so not using them any more than I need to.
  7. French Meadow makes some pretty good gluten free frozen cupcakes http://www.frenchmeadow.com/ You can check out the store locator to see if they are available near you. If I get in a pinch on time I will pick those up. My dd likes Kinnikinnick cookies too. We are lucky that there is another kid in her class that has major food allergies. My dd goes to a small Catholic school and there are only 11 kids in the class and 2 of them with major food issues so all the parents are really good about letting us know if they are bringing in something. The teacher puts reminders in a lot of her weekly newsletters about this too.
  8. teresasupermom

    School Lunch Ideas

    My dd hates lunch meat or any meat that is cold at all so that eliminates a lot of the roll up type foods or lunchable ideas. We do a lot of leftovers from dinner that get popped in the microwave for her. We also send in gluten free chicken nuggets which also go in the microwave. The only thing that she will eat cold is pb&j on Udi's bread.
  9. teresasupermom

    Breakfast Restaurants...

    Interesting that you post this. We ordered EZgluten test strips so we could test our favorite breakfast restaurant. We eat there every Sunday after church and I have been suspecting that my dd's food was contaminated. They have shown me the food labels and even gone to the trouble of cooking her food in a separate skillet. (She was eating hashbrowns, eggs, and bacon.) Sure enough though I brought her food home and tested it and it tested positive for gluten. Thankfully the owners are very considerate of our dd having celiac so going forward we will be bringing in gluten free cereal for her to eat whenever we go there. (My dd really doesn't care what she eats and half the time would prefer cereal anyway.)
  10. I agree with the advice above. I'd start with doing as much naturally gluten free options as you can. We buy one new gluten free food to try a week. (Well we aren't doing that much any more, but that's what we were doing.) We wound up throwing a lot of food out at first. By doing the naturally gluten free stuff you give them a chance to forget what gluten tastes like and they are more agreeable with new foods when they aren't trying to totally replicate it. We had to switch the whole family gluten free. It was very overwhelming at first, and sometimes still is. In the beginning you may accidentally gluten her more than you want. You just miss things at first. I remember switching my roast recipe to use soy sauce instead of onion soup mix. I thought I was so clever only to realize that um, yah, soy sauce has gluten in it. (Not all brands, but a lot do.) Gluten is in a lot of things. It's in things you don't expect. Foods we buy a lot - Progresso soup. We use their soups to replace Lipton Onion Soup Mix for my crockpot meals and we use cream of mushroom soup for a lot of my casserole meals that I used to use Cambells on. Chex cereal goes over well in our house. Gluten free pancakes some of my kids like them, some will not eat them. Udis is the only bread I can get my kids to eat. Kinnikinnick makes gluten free Oreo type cookies and chocolate chip ones that taste similar to store bought chocolate chip cookies. Those we don't buy a lot, but they help with the store bought fix. Kids want to be like everyone else. Watch out for things like Rice Krispies - they are not gluten free. A lot of things you think don't have gluten in do. Tinkiyada pasta is a life saver for us. Just make sure you read the directions and cook it as long as it says to. The first time I made it I tried to do it by looking at it like I do regular noodles and they wound up way under cooked. I hope that helps.
  11. While I get what you are saying a lot of the kids are having poor growth and poor weight gain. My dd for example hasn't ate dinner lately because she's so darn picky. She will just not eat. Some of these kids will choose not eating at all and they don't all eventually eat. Some will just lose weight and become more malnourished.
  12. We are still working on my dd gaining weight. She has not gained any weight in a year and I am very concerned about that. She is 7 soon to be 8. She has been completely gluten free for a year, but her antibody levels are still high indicating she is getting contaminated somewhere. Was she tested for antibodies at all? For us the antibody check has been very beneficial. I wouldn't have realized that even as close as I thought we were being that she was still being exposed to gluten. With the follow up lab work I realized that the whole family had to go gluten free and I have concerns that my dd is in the super sensitive camp. Just wondering if she could be being exposed or contaminated and that's why she's not gaining. I know that from what I have read it can take a while for the gut to heal. We're not there yet so I don't know. Sorry if I'm not much help. We're still learning a lot.
  13. I agree with the others on getting a diagnosis if you can, especially if he is fighting you on this. If he has celiac then he will have to accept this no ifs, ands, or buts. Without a formal diagnosis it is going to be harder to keep him safe from gluten with others working against you. If you have celiac he definitely is at risk for it. As far as keeping him gluten free in your house, my kids understand that we cannot have gluten in the house or their sister will be sick. I do allow them gluten outside of the house and at school. My soon to be 5 year old is an absolute pain in the neck and can taste the difference in gluten free foods. I have given him stuff and him not been aware it was gluten free and he's told me he didn't like it. When my dd was first diagnosed she wouldn't eat a lot of things that are gluten free that she eats now. I think they need a certain amount of time to adapt to the new tastes. For my dd with celiac it seemed like after she was off gluten for a long enough time she lost the "taste" for gluten filled foods and then introducing gluten free options went better. Perhaps that will work the same for you. I agree with everyone else here though I would get him screened.
  14. I am beginning to think my dd is super sensitive. She definitely can't handle living in a gluten house. We have gone gluten free for everyone, but I really am suspecting she is super sensitive. How do you define super sensitive and how do you go about figuring out someone's threshold? (Obviously not exposing her to gluten, but I mean restaurants, processed foods, etc.)
  15. I've read a bit on this as I have a 6 month old. There are some new studies out saying that the best time to introduce gluten is between 4-6 months to reduce the risk of celiac. Because our whole house is now gluten free I am finding it hard to do that, but I have been trying to expose her to gluten. This is a very personal decision so I don't think there is one right answer. For me, I wanted to expose her because if I could keep her from having celiac that would be ideal. Living completely gluten free without ever being contaminated is very difficult. I have also read that giving hydrolized formula (alimentum, nutrimigen) lowers there chance of celiac. I will warn you those formulas are expensive. Breastfeeding also lowers there chances so bfing would be best. Regular infant formulas are gluten free though so you don't have to use hydrolized formula. I just thought I'd throw out the info on it in case you were interested.
  16. I can sympathize on this one. My dd celiac antibodies were not going down so we finally made the switch to the whole family being gluten free almost a month ago. We have a large family as well - 7 kids, 6 living at home. I got picky eaters to boot so it's been interesting to say the least. You don't realize how much you live on bread and pasta until you make the switch. We buy gluten free pasta in bulk from Amazon. Bread has been a different story. I buy Udi's sandwich bread for my dd for her lunches, but the rest of the family no way can I afford to buy gluten-free bread for everyone. We've kind of just given up sandwich bread in the house for now. I am working on baking my own hamburger buns. For the most part though we are trying to cook things that are naturally gluten free. They go over much better anyway. Chicken and rice, tacos, tator tot casserole, mashed potatoes and hamburger gravy. Those are a few of our staples now. We use cornstarch for our gravies where we used to use flour. Maybe if you gave us some ideas of what you used to eat and what meals you are struggling to replace and maybe we could help you with some replacement ideas.
  17. It definitely could be celiac. I would start with seeing about getting the blood test done ASAP. If you get a positive blood test then you got your answer. The blood test only takes about a week to get back, maybe sooner. If it's negative you can start a gluten free diet and see how he responds. If you have a history of autoimmune disorders and allergies though I would also see about screening for other autoimmune disorders and have allergy testing done. I have two kids with type 1 diabetes, 1 with celiac, and 1 with hashimotos thyroiditis so I am paranoid altogether now. Any time my kids get any strange symptoms I start running through my head all the different possibilities. I guess my point is make sure you keep your eyes open for anything that could be causing the problem. The symptoms you describe sure sound like it could be celiac so you are a smart mama for investigating this. I would start with all of that, see how those results come back and then move forward from there. While gluten could definitely be the culprit I'd start keeping a food diary as well and noting any responses to food.
  18. Yep, our pediatrician caught this. Blood test takes anywhere from 4 days to a week or so to come back. I'd go in and ask for a blood test if you are concerned. If it's elevated they will get you in much faster to a GI.
  19. Right now I am trying to eliminate everything because my dd's celiac antibodies are still highly positive and I really think she is not directly eating anything with gluten in it. It's so hard for me to explain to people and even my dh is frustrating. He thinks the problem is just that my other kids are messy and getting our house gluten-free will fix all problems. I do think that our whole house being gluten-free will help of course, but I still think there are other places besides our house she is reacting to. It's hard to figure out what she is reacting to of course with her antibodies still high. She still is complaining about her stomach hurting often. Anyhow, glad this subforum is here because I have a feeling we are going to belong here.
  20. Well that was my dd's symptoms. Well not the inattention, but the constant complaining of stomach hurting. And she didn't really act sick. I thought she just was trying to get out of doing things because she'd say it on days she didn't want to do stuff. Then as soon as she got to stay home she'd go right back to playing. I felt awful once she got diagnosed for not catching it sooner. Since your little one is still eating gluten I'd go see about getting tested if you can. That would give you a real good idea about your other one as well and that way you wouldn't have to put your other child back on gluten. If one child has it then the other is a lot more likely to have it. Now that's just what *I* would do, but if you don't want to test then you can always do gluten elimination. What I like about doing the blood test is that I can check her levels with a follow up so I can see if she's being contaminated and me not realizing it. If I hadn't been following her with blood tests I would not have realized how much gluten contamination she was getting. She would still be sick and she'd not be getting better. Honestly though those symptoms sound like they definitely could be celiac.
  21. I am so stressed out about dealing with the inlaws. They are trying really hard, but they do so many things that revolve around food, going out to eat, etc. I feel like such a jerk, but I just called my sister in law and insisted on my daughter taking a sandwich to the restaurant they are going to. I am stressed out enough about her eating in a restaurant, let alone eating food cooked there. She is reacting off of everything and I just can't get her levels under control. My sister in law didn't say anything, but I just feel like everyone thinks I am being overkill. I feel like if they got it they would ask me to pack her something and not make me have to say something. I feel like if they really understood how serious this is they would ask my input on what she can eat. They are trying really hard so I am not really wanting to complain, but I am having major anxiety right now about my dd going out with them. Does this anxiety get better? Will she ever be able to eat in a restaurant?
  22. Yes? I am guessing more handwashing is in order. I could probably rearrange things so she is in her own room if I had to.
  23. She's only 7 so if my inlaws bought her something she would eat it if they told her too. She's not quite old enough to speak up for herself yet. She's almost there though. But having her working with me sure helps. I sure wish I could figure out what is triggering her. Getting my family on board was tough, but they are coming around. Besides they can eat gluten at work and school so that helps.
  24. teresasupermom

    Feeling Guilty About Missing School? Teachers Please!

    Hopefully now that you have a diagnosis and are gluten free you will be feeling a lot better. I know for us my dd misses a lot less school now that she is gluten free. I certainly think if you explain to your teachers and keep up with your late assignments they will understand.
  25. It certainly could be celiac. Does he have any other symptoms? I ask this because I have 2 kids with diabetes and one with celiac and the rapid weight loss is a red flag for diabetes as well. But if he's not having other symptoms - frequent urination, excessive thirst, I wouldn't be concerned about that. I definitely would see a GI doctor. Have they done a blood panel for celiac?