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Everything posted by chiroptera

  1. Soy milk isn't dairy. There is also rice milk, almond milk and even coconut milk. The other thing I did want to mention is that sometimes people who can't eat gluten are also casein intolerant. That is different than "just" dairy intolerant. Dairy (or lactose) intolerant refers to one part of the dairy, casein refers to the milk protein in dairy. So, even soy and rice cheese has casein. Yes, it is very very confusing at first! Maybe the two weeks she is home, you could just take her off dairy (and try things like soy milk/yogurt, etc) and see if that helps. If not, she may also be casein intolerant (my twin daughters are as well as gluten intolerant/celiac). I had to learn all of this myself too. This is a GREAT place to learn and to get help Also, while I totally agree about limiting the gluen free processed foods, I found that with my kids, I did have to balance that with them wanting to eat treats like everyone else. It's one thing for an adult to just eat the basics, but for children, you don't want them to feel deprived. And if you go with the goodies marked gluten free on the box you should be fine. All kids like a cookie in their lunch, kwim? Good luck! Btw, one of my twin daughters was vomiting constantly right before we took her off gluten. It did take a few months for her to not feel like she was going to throw up. Sometimes it does take time but the good news is children usually heal much faster than adults. Happy Holidays!!!
  2. Amy's brand makes many gluten free pizzas. Some are even dairy free. They make small ones that cost $4.99 at our stores here. Could you buy one of those and make it? I have made in in the morning, cut up and wrapped in tin foil and put in a thermos. It may not look pretty but they are good and certainly better than getting sick.
  3. Hello. Do any of you or your children happen to get a red rash around the mouth (but not the actual lips; more of like a ring around the lips) and/or have earlobes or the whole outside ear that turns bright red after eating gluten? We think our son does when he has gluten (which is not intentional) but are also thinking it may be related to blue dye 1. thanks.
  4. Definitely! Migraines were one of my daughters main Celiac symptoms!
  5. It just dawned on us that perhaps our George Foreman Grill is probably contaminated from all our gluten eating years? What do you think? thanks.
  6. Sorry to be Debbie Downer here but just pulled our twin daughters out of school due to issues........I am homeschooling them now........
  7. WOW Sounds like a "big episode" I had in the Spring, about 2 months before going gluten free. I had been standing for about an hour ironing, stopped, called my mom on the phone (as I was still standing) and all of a sudden I told her, OMG, I feel like I'm falling, I AM, and I gently fell to the floor on my left side all the while talking. I never ever passed out, just fell over. Of course she flipped out, came flying over to my house and by that time ( about 5 mins) I"m sitting up worried my 4 year old is playing with scissors or eating dog food So I called my doctor's office and they talked to me about low blood pressure, low blood sugar (both of which can lead to problems.) I spent months using a glucose monitor and my numbers were never that bad ( high or low). Now I do have real low blood pressure. My doctor explained that sometimes when you stand for long periods ( or sit a certain way without moving your legs much ) blood can pull in "one spot" or something of that nature and you fall over. She was not very concerned as I am 100 percent I did not black out!! I know that there is a condition called Orthostotic Hypotension where you just can't stand long. Don't know if you are familiar with The Wiggles, kid performances, but if so, that's why Greg (yellow shirt cute one) left. I really think I had/have that BUT (and your post really got me thinking) I have NOT had ANY issues since going gluten free in June. Very Interesting! OH, also sometimes your sodium can get too low and I have this tendency and that can cause issues as well......my doctor since I have low blood pressure it is very important to eat salt, esp if I crave it. Total opposite of what most people are told I know. Good Luck! It is a very scary feeling, at least it was for me. And sometimes I would feel like that while I was driving and would have to pull over.
  8. First of all, you are NOT complaining! You have been in pain of different types this whole year. That just isn't good no matter how you look at it or what is happening to other people, should they be nice things or worse things. One thing I have learned (and I've had some really really bad years, this being one) is that what happens to other people truly shouldn't effect how we feel about ourselves. Meaning that, just because you haven't had "The Worse" happen, you have had trauma, you don't feel well and for you, you have had it rough. So don't beat yourself up about feeling frustrated, okay? Two, you have a really great boyfriend, but you already know that! And three, FEEL BETTER!!!!! Seems everyone has times where things hit them all at once, (again for me now) but in the end, it will work out! Now go take a nap!!!
  9. OH, If your hospital has special trained social workers then I definitely would ask for their help! That is great!!!
  10. Yes, we seem to do fine with the Rice and Corn Chex, but get sick from the flavored ones as well. All four of us (me and my kids).
  11. Well, I certainly am NOT trying to disagree with the pp who suggested getting a social worker, but please be careful with that because one, they made "invade your territory and read too much into this" and two, betcha they will have no experience with gluten moods. Our five year old does the same thing. We know we are in trouble and storms a brewing when his outer ears turn red and he boom, get the red rash ring around his mouth. Then, the tantrums begin, bad. Since he only five, he is small enough for myself or my husband to hold tightly (not, "that" tight but enough to restrain him comfortably) in a big hug to help him calm down. I try to deviate his attention with pretty much anything, even if it means packing the whole family outside to play or go to the park. That usually helps although it's not realistic to do, say at ten at night. I also try to give him extra fluids of whatever he will drink. I know that probably doesn't make a difference in getting those darn gluten molecules out of his system but it makes me feel like I'm doing something. The tantrums are very hard to handle for us, too. Our nine year old gluten-free daughters have more "mood swings" with an attitude and get mean, mouthy and hard to get along with, but they don't physically tantrum like they used too. Good luck to you!!!!
  12. Thank you so much for your feedback! Every year I call the doctors and since their bday is in November and often their thighs are still a mess and I just hear "oh, just give them some motrin and put some ice on it." I feel better knowing that my family and I are not the only ones thinking their may be another issue involved. I had one of my twins tested for intolerances as part of the gluten free issue and she came back also egg and casein intolerant. When I stopped those foods all her migraines, GERD and digestive issues went away (along with going gluten free).
  13. All this talk about shots made me think this would be a good place to ask this question: A little background: My twin daughters never got the flu vaccine until 2003 when they were 4 years old. EVERY singe year they get it (and we haven't yet because one, our doctor didn't get it and two, we may be dealing with an antibiotic allergy and one of them has to complete allergy testing in December before they may be able to get the flu and three, I'm not so sure I want them or their brother to have either vaccine), they get severe, I mean entire upper thigh swelling, flaming redness and then entire upper thigh bruising that last for two to three months). There have been times we get the shots around Halloween and even in February their legs are still bruised and tender. Do any of you or your children have this kind of site reaction? They have also gotten the side effects listed like a mild fever, etc but not very badly. They are identical twins and their brother who is now 5 has gotten the flu shot since he was eligible at I think 6 months but he has no site reactions or had any side effects that we could ever tell. Now I'm really wondering..............Thanks so much for any information/experiences!!!
  14. After you get glutened (or glutenated as my 5 year old says when I look pregnant)? I am specifically talking about the upper stomach under the ribs big bloated when you are far along in pregnancy not the "gotta go now" lower abdomenal bloat....... thanks! Mine seems to last a really long time, like a week or more and I am trying to figure out if I'm getting addl gluten somewhere or it's typical.....
  15. Hey there just wanted to mention a quick thing: as explained in the book I mentioned, sometimes you may feel not better but that may not mean your new diet isn't working! Very impt to know and is in the book. I never knew that either but with an elimination diet there are various timelines for feeling better, worse, or the same. HTH
  16. I don't know is anyone has suggested this book and I don't have time to read through all the posters right now, but I love it and it has great elimination diets in it all step by step and laid out and what to expect, etc. Food Allergies and Food Intolerances I believe it by Dr. Branoff can't check right now but try to have a look at it; it should be very very helpful Good Luck to you!
  17. OH MY GOODNESS!!! Sounds and looks just what my now 10 year old daughter just had for weeks ALL over her expect for parts of her torso. The little girl itched SO SO SO bad she broke her skin all over and had to take a zpack to prevent infection. I could cry when I think about how itchy she was. She was so miserable. The doctors (ped and allergist) don't really know what it was but I do: DH........About this time I started (also gluten-free) started getting sick again too. We "think" that we had branched out eating too many new foods. Like chips and Fritos and things we never ate when we even ate gluten. I was just trying to branch out to try new things that I heard others eat because honestly we were getting sick of rice this and rice that and more rice with that. Anyhow, what I did for her itching (benadryl did not help, she was beyond that point) was corn starch. After her bath and constantly throughout the day I would take her to stand in the shower and rub it in her skin over and over. We also would alternate with CeraVe lotion (we got it at CVS) and it helped a little. She is still using that twice a day. We also are having the kids use my parents own well water (treated) for baths because our city water is full of chlorine and that makes her worse. So, in summary, I think it's highly likely it is DH and I hope your little one feels better soon! The itching is insane!!!
  18. I find this very interesting because I had NO problems with any food at all until I almost died from a severe c. difficile infection in 2003. My gut was ripped out but thank goodness I didn't have a complex toxic megacolon that burst. SO, for me anyways, the c. difficile (I believe) caused my problems with gluten and casein. I am SO much better now off of those foods.
  19. I have had two endoscopies as an adult and had NO problems at all! The first one I didn't feel a thing, although for the second I did start to wake up as they were pulling the tube which was rather freaky but not at all painful. Really, it will be fine and if I had to have another one tomorrow I would be fine with it! The one "funny" is that be careful who is your designated driver because you will be goofy from the sedation and you never know what you may say!!! You may just "spill the beans" on something you'd rather not!
  20. Cool, lots more replies! My kids (now ages 10, 10, and 5) are taking the Jarrow suggested by a previous poster. I don't know if it's a fluke, or maybe because they are healthier off gluten, but only one of the three got strep throat last week. One twin was only very mildly sick and their little brother didn't get sick at all. Usually my daughters get everything going around and when they would little would end up so sick they would be in the hospital when all the neighbors kids were better after three days!
  21. OMG, I am SO sorry! First of all, PLEASE do not give her the money for the mix!!! After how nasty she has been? Heck NO. And if the harassment continues I would go to the superintendent. This is no different than harrassing a special needs child for needing a diaper. Everyone is different, you did ALL the right things and this teacher is a creep!!!!!!!!! And, what on earth are they doing baking in 5th grade? All the time? I shouldn't be surprised though as my twin daughters missed a week of 4th grade last week and only had 2 hours of makeup work. They told us "see we don't do much at school." That is why we homeschool them in math as they waste the day in public school. Keep you chin up, be proud of your daughter!!!!
  22. Just going to chime in and say that I do not like it when anyone implies that they should vaccinate their child because "oh if you don't the diseases may come back and oh, you are putting my child at first who is comprised." I say this as my children do get vaccines and are up to date, but to suggest to someone that their BABY is the sacrificial lamb for the wellbeing of theirs is very cold and upsetting. more so if the person isn't even a parent.............
  23. We ate Lay Ruffles for a while and did okay with them then look out, got real sick. Then when also recently got sick from the regular chips and Tostitos as well. Tried the Fritos and that made us really sick. I guess my point is yes we have had problems too. We buy very little processed foods (granted it doesn't sound like it) but boy I am done with that. We are sticking to plain popcorn I make (your daughter may be too little for popcorn) and clearly marked gluten free crackers. Even though something may not appear to have gluten ingredients I have learned that they are not necessarily gluten free. It is hard and can be very frustrating because you feel like you can't buy mainstream products or food that is served at someone else's house. Good luck. Unfortunately sometimes it's trial and error but when you're dealing with a sickness it is hard either way.
  24. What really bothers me is that you went out of your way to make sure the vegans had something to eat (which is a choice not for medical reasons typically) and your little one MUST eat gluten and egg free or he could be VERY ill and NOONE carried?????? And he was in the hospital and you got NO support???? What the heck??? I do not think you are wrong expecting the same treatment that you have given back. I don't mean to sound harsh but your family is going through a difficult time right now and you need people who want to understand and be there for you. If I would you I would find a new group of "friends." I am sorry but I don't think those people were. Please take care!!!!!
  25. YES!!! Not to sound weird but I get happy to hear that others have the same problem as one of my twin daughters!! GERD was her MAIN symptom of Celiac; her identical twin had more typical digestive issues. We found out via Enterolab testing that she is gluten, casein (the milk protein) and egg intolerant. If she does not eat ANYTHING with those ingredients she has NO gerd!!! We are SO glad to find this out as we tried Prevaid as a last resort for a short while and it helped only with her actual burning but not with her other Gerd symptoms such as cough, chest pain, throat mucous, etc. Honestly it is hard for her/us to not have casein and dairy. Much harder than just gluten. But is is so worth it. Now with Halloween (she is just nine) she did have some regular (but gluten-free) candy and she has been sickish for two days with Gerd. It is so obvious that she can't have casein! We love soy and almond and rice milk but we have trouble with cheese because you will have to have vegan cheese as the rice/soy cheeses still contain casein. We don't like the vegan stuff so she does without and I just make her stuff like cheeseless pizza, plain pasta, etc. Keep up the hard work though! I bet you will feel better and need no drugs!
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