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About Amooliakin

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  1. This is a late post since we are leaving tomorrow! But it occurs to me that just maybe someone has been to Havana and knows something to share. We have traveled extensively and know some Spanish and will be staying with friends... so I'm not too concerned. But if anyone has experience in Cuba please let me know ASAP. Thanks, Amy
  2. Does anyone know if this is safe? It is clearly marked as Gluten Free but the fine print says "Be aware that this loaf shares equipment with and is produced in a bakery tht uses flour, nuts & dairy products" So what's the deal? Is it less than 20ppm because it says gluten-free? Or is it anyone's guess? I am certainly hoping it is OK because it is the most delicious bread I have ever tasted.
  3. This is the kind of thread I need to read more often..... We try so hard to be 100% gluten-free... but I know from my daughter's mood etc. that we are probably only at 97% due to errors and CC. It has been 6 months on the diet and in some ways it is easier - but then I learn more about how cautious I have to be. We are going in for the 6 month checkup and I am curious to find out if the blood test results will be any different...
  4. The reason I am particularly interested in the genes is that after my daughter was diagnosed I got a blood test to see if I am a "carrier" and I had ONE HALF of the DQ2 gene, which would indicate to me that the father provided the other half. Only in our case there is no biological father around because we used an unknown sperm donor (hope this is not TMI). So I am wondering if she got two halves of DQ2 one from each side.... or got a full DQ8 or DQ2 from the donor. I do realize however that where it came from is not the point. But I'm just more curious, and especially so since I want to find out my son's chances of getting celiac. His blood test came out negative for the antibodies, but they did not run the gene test on his blood (even though we had requested it).
  5. My heart goes out to these kids like your son and my daughter. It helps that they know they have been "glutened" but to the outside world they can just look like difficult kids. And I know my daughter was very good natured until celiac reared its ugly head. .... not to say I don't feel bad for all the kids whose symptoms are more physical...
  6. I am talking about a whole other level of cranky.... In my daughter's case she can't tolerate anything from anyone, she cries at the drop of a hat, she has no sense of humor, and she is tired to the bone. There are certainly times when we can't tell which is gluten and which is normal life of a kid.... but there are other times when it is all too clear.
  7. We found it helpful to have a batch of gluten-free brownies in the freezer at school so that if there were any celebrations, like birthdays, she would not feel left out. Also I'd be sure to continually check in with the nurse and teacher about mood changes and such. My daughter's main symptoms are irritability and tiredness, so if she gets gluten in her system and says she feels sick they still may not let her go to the nurse to rest if they think she is just trying to get out of doing the work (my daughter is in 2nd grade). Obviously if she has pain or vomiting there would be no question. But she does not have those symptoms any more, just the crankiness. I would also talk to the other parents as much as possible and even go in and read a book to the class about celiac. It will make your daughter feel better understood and it will reduce the chance that another child or parent will mistakenly give her a food she can't eat. Good luck
  8. I could not agree more! This is EXACTLY the problem I am having with my 8-year-old. We try to be 100% gluten-free, but there seem to be so many times when we make a tiny mistake... or don't know if we have. Then she may have a really bad day or two (cranky, irritable, tired, mopey, burping) and I have to guess what the culprit was. To make it worse, even though I have explained all this to her school, I fear the teachers, principal, and even the school nurse, don't take it as seriously as they should. Or rather, they think that since it has been 6 months gluten-free there should be no more problems, so they blame her mood on.... her. I wish it were simpler, but we don't live in a bubble. Don't you wish there was a handy little tester that you could put each food into and see if it contained gluten? I saw something of this sort on the Internet for a huge price, but when I asked about it, they said they had not even really developed it yet for consumers. My thoughts are with you and if you find a solution, please let me know. Hiden sources of gluten and CC is the worst!
  9. My daughter loves the Annies gluten-free Mac and Cheese. And since I make it for her and the regular kraft orange stuff for my son I can throw in a bit of the kraft cheese on top of hers to make it extra cheesy. I like it too. I agree with everyone about not going half way... or even 97% of the way, as we seem to be doing. We try to be 100% but it seems that every week there is a chance to mess up somehow, even if it is in a tiny way. And then my daughter suffers and we all suffer. We have our 6 month followup today and I'm curious to see how my daughter's blood test will look compared to the first one. And I'm also curious to see if she has the gene... although since she has celiac she has to also have the gene. I'd like to know which one though, since there are at least 2 that can cause celiac. Good luck....
  10. Thanks everyone..... I am going to take the high road and bring a good attitude, our own turkey, stuffing (either in or outside the bird), and some gluten-free desserts for everyone to share. As usual, the practical matters are not really a problem. I was upset because of my history with my mother and feeling that she was not taking me or my daughter's situation seriously. I do realize that there is a learning curve about celiac. I tend to forget that only 2 months ago I knew absolutely nothing on the subject at all....
  11. I'm feeling really sad right now about Thanksgiving which is usually one of my favorite holidays. I had called my mother, who hosts the gathering (there are 18 of us all together in 3 generations) weeks ago to offer to make the stuffing so that Rebecca would be able to have the turkey and not feel left out. She agreed, but then suggested we make two turkeys since a 22 pounder was getting hard for her to turn. I said that would be fine and that I would stuff one and she could use her regular stuffing for the other. I then got very excited about making a super stuffing and a few pies that everyone in the family could enjoy. Well tonight she called and said that since she really needed to have a LOT of her stuffing, that she would make a large turkey and I should just bring a small turkey for Rebecca. I agreed, but I said I felt hurt because: A) that would make Rebecca feel like a second class citizen I wouldn't get to share my cooking with everyone C) the implication was that my stuffing would be lousy I explained that my stuffing was not going to be made of saw dust! But she insisted that all my siblings would be disappointed if there was not enough of her stuffing (which by the way is just the bag of pre mixed bread and spices). So now I feel like skipping the whole thing - though I won't cut off my nose to spite my face. It is sad that my Mom can't embrace the diversity of the family and support her grandchild who has just been diagnosed and may be feeling a little tentative herself about what place she has at the Thanksgiving table. I talked with both my sisters about it and they were really supportive. But one of them also added that maybe it would be OK for Rebecca to have the turkey with the bread stuffing since (and this logic defies me) she was only recently diagnosed so therefore she was eating stuff bad for her before so therefore a little more would not be a problem. And this is from a very supportive sister. I feel like crying - honestly. Thanks for listening....
  12. That is outrageous! My daughters test was only a tiny bit above normal and our GI doc still reccomended the biopsy which showed that my daughter DOES have Celiac....
  13. I really feel for you and your son. This is so hard! My daughter was diagnosed a couple of months ago. She is 8 and I agree that one of the biggest and clearest symptoms on the outside was her mood change. Because she complained of tummy aches on and off since she was 5 and no one could find anything wrong, I just thought she was overly sensitive. But it got worse this past summer with more symptoms and we had to go to a GI to get the real diagnosis. Since she has gone totally off gluten (and as you know you can't allow even a tiny bit of cross contamination) she has stopped having reflux, gas, stomach pain, nausea, and diarrea. What is most impressive though is that her mood has lifted, she is more tolerant of frustrations at school and at home, etc. I know there is a big difference between 8 and 17. But a parent is a parent no matter how old your child is. When your son starts feeling better (as I hope he will soon) your mood will lift too and everything will seem easier. Hang in there.
  14. Hi. My daughter was recently diagnosed, so my son and I got the blood test as well. We were both negative. But I developed lactose intolerance a couple of years ago and wondered what else could cause that at the grand old age of 47. I guess I am looking at/for celiac in everything now that I know so much about it. So my question is - Are there lots of other causes of lactose intolerance at a later age? Or is it more possible that my blood test was wrong and I do have some intestinal damage?
  15. I know I am going off the topic now... but you bring up an interesting phenomenon. Now that I know about celiac, and we are taking care of our daughter in the right way, I find there are SO MANY adults who I meet who think they outrgrew celiac years ago, or their adult kids did, etc. They do not want to hear differntly - and I don't know them well enough to tell them the truth. I wish there was one simple booklet that I could hand out instead of trying to explain it or refer them to books they don't want to read or web sites they don't think they need....
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