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Everything posted by Foreignlady

  1. I am replying to myself in case someone else is interested in whatever I find... We had arepa burgers yesterday, it was awesome. My husband insists that it was better than traditional wheat buns. Similar to pan de yuca, which I have ready to cook on hand (I will report back on how the kids like it later...)... pao de queijo and pandebono. All three are cheese bread variants from different South American nations, but of course have lots of dairy.
  2. Well, there certainly is no lack of ideas and suggestions on how to deal with crosscontamination, but it occurred to me that I can't very well transform my home into a gluten-free zone until the other kids are tested, since they only ever eat at home (not in school or daycare) and would need to keep eating gluten until a biopsy confirmation. In any case, I have read a lot about the psychological impacts of this diagnosis and I don't want my daughter or myself to become hypervigilant and anxious and afraid of food. I think that would be more harmful than the accidental trace amount exposure once in a while. We have taken the appropriate precautions, followed advice found here and elsewhere, make most shared meals when my daughter is home gluten-free, and trying to relax about it. If that makes me a bad mom according to some who shall remain unnamed, so be it.
  3. Thanks for the tips RE: parenting celiac kids, Sienna. As for testing the rest of the kids, our pediatrician didn't think we should screen the siblings yet as they are asymptomatic, (1.5 y.o. twins, 3.5 y.o.) and are all 97th percentile + in growth charts. He was very prompt to test and refer our daughter for diagnosis, which is why we have confirmed celiac a mere 4 months after digestive symptoms first manifested. So I trust his judgment and he said we will revisit the question later. I'll ask for the test if we need to draw blood at some point for some other reason.
  4. Hi, I am new to gluten-free and it occurred to me that several parts of the world don't rely on wheat in their diet, so I am looking for authentic world cuisine foods to try. At the moment, my quest is for bread substitutes. I have found a few to try but thought you folks might know others. I was surprised that I can't find a thorough list of the options somewhere. So, I plan to try: * arepas, using masarepa or perhaps masa harina - to replace sandwich bread and hamburger buns * injera, using teff, but I might not ferment it to make it easier and perhaps more palatable to my 5 year old celiac - to replace Naan and bread rolls with things like stew * buckwheat crepes - for stuffing with savory ingredients or replacing regular pancakes * socca, using garbanzo flour - for pizza base and to eat as is. Have you come across anything else I could add to my list? Thanks!
  5. Thanks again for the tips. As for dairy, I won't eliminate without some evidence that she can't digest it. No reason to believe that now, she is not having any discomfort. But I came to terms with something: before worrying too much about crosscontamination, with a 5 year old I need to worry first about the GIANT contamination in the form of food she eats at school. In spite of all my coaching in the morning and sending her off with gluten free chocolate to share with her class on Valentines Day, a friend gave her money to buy something at the bake sale (why her teacher let her go there, I don't know!). And, same day, she ate a cereal bar on the bus that another friend gave her. It will be an uphill battle to get her to understand the seriousness. (Now, please don't tell me I need to home school her ?)
  6. Thanks to all who kindly shared all this advice. It will be helpful in making choices for my family and trying to keep us all healthy (and sane!).
  7. Thank you very much squirmingitch for coming to my defense. I literally interrupted my dinner to come post because I am livid. I came here specifically to ask for help coming to terms with the seriousness of this condition. That I should be received this way and that there should be any implication that I mean my daughter any harm is truly offensive. That kareng appears to be a moderator here is utterly alarming. I will be seeking my support elsewhere. I am sorry because others seemed welcoming and knowledgeable. kareng, you are a horrible person.
  8. Good afternoon, My 5 year old daughter has just received her diagnosis of celiac's disease after a biopsy. I have not met with the gastroenterologist since the diagnosis (apparently next appointment will only be in a few months) and we have been told that we will be contacted for an appointment with a nutritionist in a few weeks. Until then, I am left with a lot of questions. This is day 2 of going gluten free and I am feeling slightly insane. I see bread crumbs everywhere! I am trying to think of all the ways cross contamination can occur and have designated a small isolated section of my counter as the GLUTEN counter, where anything bread related must happen. As I fiddled around making three different lunches to accommodate my 4 small children's particular dietary needs and preferences (the 5 year old with celiac is the eldest, and one of my twin babies has an egg allergy), I thought I would lose my mind. Bread crumbs would travel on my fingers, I worried about transporting toast to a plate near hers, and of course, the dreaded idea of toasting her first ever slice of gluten free bread in the regular toaster. I must have washed my hands 10 times and I had to restrain myself from making her eat at a separate table lest her twin baby sisters started to toss their crusts around. I am making a list of things to buy to use exclusively for gluten-free stuff: I need new wooden cooking instruments, a new nonstick pan, a new toaster... or do I? There is a part of me that wonders if I am succumbing to some kind of collective gluten paranoia. Please don't get upset at me for feeling that way! I just have trouble wrapping my head around the idea that a tiny trace of gluten left in a pan that has been cleaned could really do any damage. I have tried to think of the gluten as a poison. It's not like I would accept "just a wee bit of arsenic" in my children's food. But then again, I am visualizing gluten like a feral cat clawing away at my daughter's gut, and then thinking about the little speck of gluten leaving a tiny pinprick... which doesn't seem so concerning. So how bad is cross contamination REALLY? In your experience, based on your knowledge, based on your opinion. I'm open to your thoughts. But, please understand that at this time, I am NOT considering turning my home into a gluten-free home. I don't want everyone to be deprived because of one person's diagnosis, and quite frankly I can barely imagine how I will finance one person's gluten-free diet, let alone 6! Thanks for your feedback!
  9. FYI - Diagnosis confirmed... I'm getting ready to flood you folks with all my questions and concerns. Thanks for the support!
  10. Good morning, I am the mother of a 5 year old who has tested positive on two blood test for tissue transglutaminase antibodies (results, over 300 then 75). She is scheduled for an endoscopy and biopsy next week. I understand that her pediatric gastroenterologist is a celiac specialist so she should be good... My worry is that my daughter's GI symptoms have been steadily decreasing and she hasn't had a distressing episode of acute pain, nausea, vomiting or diarrhea in close to 2 months. She reports having abdominal pain that is "medium" (very hard to get a 5 year old to quantify pain). From my perspective, the pain must be rather minor since she doesn't bring it up unless she is asked. Because of this symptom improvement, I am afraid the procedure's timing is not good and we might get a false negative result. To be clear, she continues to eat lots of gluten, but I think her improved GI symptoms are due to better stress and anxiety management. Were you very symptomatic at the time of testing? Should I ask for a postponement? Thanks for your advice.
  11. Thanks for the tips about lactose, cyclinglady. I will try using lactose enzymes and reduce her intake of milk just to be safe. Can't hurt. Ando yes, as far as I understand, the rest of the children will eventually get screened, I will ask for it for sure. I guess my husband and I should request screening too if she's diagnosed. I must say it's a rather mysterious disease, in how it manifests, if that is in fact what she has. She had just had almost 3 good weeks with only minor symptoms (pain and mild occasional nausea). Could "flare ups" be stress related? I have no idea why these symptoms started up to begin with, but it coincided with starting kindergarten and some stressful adjustment issues for her, so we actually believed her symptoms were caused by anxiety. That's why we consulted her pediatrician in the first place, and he ordered the celiac test so we could rule out all physical causes. In the past few weeks, we have set up a number of things to help her cope with stress better, and the GI symptoms also improved. In last night's episode, she woke up apparently from a food related nightmare, probably because she was feeling ill, and she became so worked up and afraid that she was going to vomit, shaking and sobbing, screaming and talking about hating herself and feeling like she were dead. It was very bad. We finally managed to calm her with soothing songs and lullabies, making her laugh and generally distracting her from her discomfort, and finally the whole thing resolved itself without any vomiting. She also seemed to get a lot of relief from learning the acupressure technique, which I think has to do with the placebo effect and the feeling of having some control over her symptoms, more so than with the effectiveness of the technique. So, I am beginning to think there is a psychological component to this and that even if she does have celiac, she is not very symptomatic unless she is under stress. Does that sound like something you experienced prior to being diagnosed and eliminating gluten? PS, I am grateful that you folks have been so supportive and forthcoming with your advice and I am glad to know that I can find help here if she is diagnosed.
  12. Thanks for the encouragement Judy. I will definitely seek advice if we have a diagnosis on adapting for baking. My daughter and I have baked together since she was 2 years old and it saddened me to think we couldn't do that anymore. Instead, I now realize we will have LOTS of trial-and-error baking experiments while we learn to adjust. No Trader Joe's here, but we have relatives that live close to the border and if necessary, we might ask them to buy some stuff for us States-side.
  13. Thanks Ennis, but we are in Canada. I have learned that gluten-free food is tax deductible as a medical expense here, but that won't offset the cost difference.
  14. Wow, what a detailed list of resources for gluten-free options. Not sure if all that is available here. Thankfully, I live in a large urban area and there are several local businesses with products for celiac, including an entirely gluten-free grocery store. Is there anyway to test for and confirm lactose intolerance? She consumes TONS of milk, cheese and yogurt. That's why I would have liked lactose pills instead. As for changing recipes, I'm coming to terms with that eventuality and will take it on as a challenge. I'm told they will screen her 3 younger siblings too if she is diagnosed, so we may just have more celiac people in the house too. But I will try to take appropriate precautions (a gluten-free toaster, etc.) and not impose such drastic restrictions on the rest of us unless it proves necessary. I am not sure we could afford to all eat gluten free either. Pricey stuff!
  15. Thanks for the welcome and advice. I really hesitate to alter anything in her diet, especially gluten intake, since her pediatrician and GI specialist were so adamant about not changing anything. As for lactose, is the intolerance associated with celiac manageable with those lactose pills some folks take when eating dairy? I don't know if they are available over the counter, though... I guess I will start with dairy and minor reduction in gluten. For example, maybe yesterday's lasagna supper wasn't such a good idea. Unfortunately, I am struggling with my own difficulties in accepting that she will have a restricted diet if diagnosed, and I keep thinking, "she has to have my lasagna one last time!" Truth is, she's probably young enough that she won't care about not eating any more of my gluten-full foods in the future... I'll call the hospital tomorrow and make sure she is on the waiting list for December cancellations, too.
  16. Hi, my 5 year old daughter is being investigated for possible Celiac disease after several months of GI symptoms (pain, diarrhea alternating with constipation, recurring bouts of severe nausea, vomiting...). She scored >300 on a blood test where normal values are under 15 (transglutaminase antibodies I think). At the moment, we are waiting for the results of a second blood test to confirm the earlier results before a biopsy is scheduled in January. Her pediatric gastroenterologist offered no suggestions for dealing with "flare ups" and I've turned to you for advice. Can you think of anything that might appease the symptoms, especially the nausea and vomiting which really scare her? I thought drinking water might help to move the food faster through the GI tract and make her symptoms more "stool related", does anyone have any support for this theory? Tonight, I tried an acupressure point that had worked for me during my pregnancy-related nausea, and it seems to have helped (time will tell). I'm not expecting medically validated advice, but I would appreciate any anecdotal experience you might have so I could try to ease her suffering while I still have to feed her gluten. It breaks my heart to see her in pain like this. Thanks for your help.
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