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wsieving

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  1. I thought I should update you all and let you know what the culprit was. This is really stupid on my part, but it WAS the flours/spices from the bulk discount store. As soon as we threw all of them out and bought new flour and spices DD cleared right up. I think with income tax this year we are going to buy cases of the things we use most so that we do not feel a need to shop at bulk discount stores. It soooooooo was NOT worth the headache, nor my daughter's tummy ache, that's for sure. Thanks for helping everyone!

  2. Well, I cannot help you find a ped because I am in the midwest, but I totally feel your pain. Around here it is hard to get away from the middle-eastern docs. My current ped was absolutely wonderful... at first. But he is one of those "doctors and tests are never wrong" kind of guys, and even though his caseload seems small for the area he never seems to remember us or why we are there. We just decided this past week to search for a new ped because he just gave my youngest son the second physical in 2 months. He was supposed to be there for a check to see if he still had fluid on his ears (he is six and still having ear infections frequently, AND recently found he has a bifid uvula which likely also means he has a submucous cleft of the soft palate). He still had fluid on his ears, but instead of referring us to a specialist like he said he would previously, he gave him a physical and said sometimes it is normal to have fluid on the ears. He also refused to write a note for the gluten-free diet for my oldest son who has ADHD because he was not tested for Celiac. He knew I was not suggesting that he had Celiac and that I just wanted to try it and see what effects the gluten-free diet had on my son's ADHD.... gggggrrrrrrrrrrrrrr

    I miss my family doctor.

    At any rate, there ARE good doctors out there. I hope you find one soon. I can imagine how difficult it must be in such a large area.

  3. Congratulations!!! I know how exciting it is :). DD was 14 1/2 months, we started the gluten-free diet September 30th. So in less than 4 months she has grown 4 inches taller and gained 5 pounds!!! If one more person insists that she is not gluten intolerant I'm just gonna smack em with the growth chart over their head, haha!

  4. Sandie, that is really interesting. Be sure to keep us posted to let us know how what results. DD still has eczema on her cheeks, that lightened but never fully went away. Today was a good day. Only one poopie, and rash on her bum nearly gone. No crabby baby either. Last night I didn't cook in my kitchen. But I also didn't clean yesterday either ( I know... really, a girl needs a break every now and again, and DH is a truck driver so I take em when I can :) ).

    Also, up until this morning I believed it must only be something she was ingesting/coming into contact with b/c I was not reacting.... WRONG!!!!! Every joint in my body hurts today, like they used to every day, and my knees are so bad I can hardly get up and down. I generally rely on nightmares for my indicator. I have been dreaming more, and mostly unpleasant, but nothing I consider to be a nightmare (my nightmares are unbelievably real and terrifying), so I really thought I was ok. I do not tend to react myself with the big D, haven't really since my teenage years and just assume that I'm probably taking longer to heal??? At any rate, my joints haven't hurt since being off gluten completely and today it's back with a vengeance.

    Problem is so much changed all at once, mostly because of a different lifestyle. I finally got off my arse and made it in to the good head doc and got myself some long needed but completely unwanted medication for ADD. As much as it makes me mad at myself for needing it and at the world for forcing it on me, it really has changed all of our lives. I became a more productive housewife, a better mom, a better wife/friend to my husband, and a friggin awesome chef! Which in turn means new/different cleaning products and food items. And of course all of the manufacturers want to tell me that their products are gluten free. IAMs even told me that they do not put wheat in ANY of their products, but their webpage has a long article about why they put wheat in their pet food and the benefits it holds for the animals :(.

    So this weekend we are going to a pet food store in the city to buy food that we know for SURE is ok (there is no place in my area to get something like that), I'm buying new dish soap that I know is safe just in case, and I am throwing out ALL of my flours and spices that came from the country bulk store (I asked them specifically how careful they are, but my flour leaked on me on the way out of the store, so how do I know for sure if the bags aren't even securely closed??? We are really pointing our finger in this direction the past day or so).

    I also recently started using a different disinfecting spray around the house and there are no ingredients listed on the can other than the active ones. I am very suspicious of it too, but will have to wait until morning to find out. If anyone knows, it is the Garden Bouquet Clorox Disinfecting Spray.

    Anyway, I will keep you all updated and I thank you so much for your responses. It is nice to come here where people totally understand and do not look at you like you are crazy for wondering if such and such chemical "glutened" your daughter.

    By the way, the past couple of weeks must not have set her back too far because she had a check up today and weighed over 23 pounds!! She was fully clothed mind you, but I'm figuring her tiny clothes and shoes couldn't have weighed more than half a pound. Her weight put her close to the 50% and her height between the 75th and 90th!!!! Before going gluten free she was below the 3% and had fallen to the 25% for height. My heart just leaped with joy!!!

  5. It took us awhile to get the gluten-free diet completely right. Once we did, she became a completely different child. I did not get an official diagnosis, but after having her in the hospital hooked up to an IV due to dehydration I knew I had to try something. I still wondered in the back of my mind whether or not I was doing the right thing (even though I knew she was getting better) until the first time she had been truly glutened after being 100% gluten free for more than a month (the first month or two, we continually glutened her with something, making stupid mistakes, not being careful enough). DD and I were at a friend's house, and I didn't think boo about checking the floors to see if her toddler had dropped any food before we got there. DD found a graham cracker and I caught her right away. She had one bite, and within an hour had severe diarrhea and a horrid rash on her poor little bum. I knew right then and there that I had made the right decision. Remarkably too, Mommy has no more acne, no more skin rash on her arms or bum, no more joints so achy and stiff she can hardly climb out of bed in the morning, and has no more nightmares that have plagues her since childhood :). So we figure she must get it from me. Once she is out of the house I plan to do a gluten challenge and get tested, but for now there is no point since the entire house is gluten free anyway. Only change later would be if I tested neg, we could resume life as normal and our food bill would be cheaper, but I don't know if it would be worth the return of my aches and nightmares.

    Before going gluten free, we had allergy testing done as well. Those all came back negative, but I really knew by that point that it couldn't be anything else since she reacted so obviously to gluten products. The only thing that I wondered was that it might be a wheat intolerance or allergy, but that is not the case.

    I do really wonder if there is another issue now however, because I just can't seem to figure it out this time. But it is like going to sleep and waking up 5 months ago to the baby I had before she went gluten free. It is so frustrating because I feel like I did before I learned about gluten intolerances - completely helpless, can't help my child.

    I have already called Iams and they say their kitten food is okay, but I was wondering if that could be the culprit anyway. Does anyone use iam's kitten food? Also, P&G said their dish soap is okay too, but it has tocopheryl something or another in there and I read that it can contain gluten also. Does anyone have problems with P&G products?

  6. We have been gluten free since september. After the first month or so learning curve, my dd started just thriving. Past couple of weeks however, we have thought she was possibly getting gluten regularly somewhere. Well, now this weekend, it's like stepping back 6 months into what our life was like before going gluten-free. DD is cranky, bm's 3-4 times per day with horrid rash and swollen nodes in her groin, lack of appetite, wants to drink all day long, waking up in the middle of the night.... we have called all over the place, iams, purina (tidy cats litter), dawn dish soap, we have double checked every recent addition to the house that we can think of and are coming up with no answers. Everything should be ok. She doesn't go to daycare, I am a stay at home mommy. We never eat out. And it seems to be something that only she is coming contact with because I am not experiencing any symptoms. Is any type of fresh meat ever a problem? What about beef in a roll? I switched for a few weeks because we were coming on hard times, and i could get 93/7 at walmart in a roll for 2 per lb, so I decided to try it. Could that be the culprit?? PLEASE help!!! I'm at my wits end!!!

  7. We noticed a change in DD's sleep pattern instantly. Probably because she wasn't being glutened anymore and no longer had to wake up to tummy aches in the middle of the night. Other things were more slow going. We have been gluten free for a couple of months now, and in the past few weeks we have noticed more growth/weight gain than in the beginning. It's almost like she is making up for lost growth she's growing so rapidly.

    His poopy diapers may be a bit weird for awhile. While DD was detoxing she had some really fowl (smelled like burning rubber.... LITERALLY) bowel movements. After we got better at shopping and quit glutening the poor girl every other day, she eventually got past the detox and started having normal bms. It is actually really odd to us now b/c her daily bm is so tiny, or so it seems to us after ruining I don't know how many outfits on a daily basis from blowouts. It takes some time though.

    You may also check and make sure he isn't getting glutened and you just do not realize it. Recheck everything in your cabinets. Then check again. Took us forever to figure out everything because so much of it is coded. The only obvious ingredient in anything is Wheat. We also buy Great Value (wal-mart brand) whenever we can because they are one of the few around here that actually say "Gluten Free" on the can/box. It is a real comfort to have that confirmed right there on the label.

    Good luck, and I hope your little man gets better!

  8. Try not to beat yourself up over it. It took us a solid MONTH to quit glutening DD every other day (or so it seamed that often to me...). We pretty much avoid fast food all together now. The only place we will go is Wendy's to get baked potatoes, and we always ask that the food prep gal/guy put on a fresh pair of gloves before handling our baked potatoes as they handle all of the buns too. You'll get the hang of things, and soon it will all be second nature.

  9. My pediatrician would not test my older two children for Celiac because my 15 month old daughter tested neg. Those of you who have read my posts know that we put her on the diet anyway and it has worked wonderfully. Our entire house is gluten-free, but the boys eat breakfast and lunch at school so are not gluten-free. Well.... we had a long weekend this weekend. They were out of school early thurs and did not go back until today. Poor DS (he is 5) went to school after being gluten free for the longest amount of time he ever has been and ate breakfast. I got a call from the nurse to come and pick him up because he vomited. When I got there, he had not run a fever at all, apparently vomited a HUGE pile of undigested food, then dry heaved afterward. By the time I got there he was feeling fine. I am really wondering if there is a connection here. I am seeing the pediatrician tomorrow and am going to request tests again on both of the boys. If he won't do it, I'll find someone who will.

    I was thinking that I should have the tests scheduled for like a month out so that I can get them good and "glutened up" before they go. Is that necessary? I was just thinking being gluten-free at home, I may want to take the time to give them non gluten-free snacks everyday after school and such to make sure that they are getting enough gluten to test positive. What are your thoughts on this?

  10. Ok, maybe DD is just sensitive to apples (because of the level of sorbitol?), but she can't even have a normal serving of apple juice or a small cup of diced apples. Is she so sensitive because she is still healing? Will she ever be able to eat apples? One serving gives her water diarrhea. It doesn't seem to effect her otherwise, but you can guarantee that her next bm will be watery diarrhea. This is so frustrating b/c it is one of her favorite juices and fruits.

  11. I am so excited!!! I try not to buy anything that does not specifically say "gluten free" if it comes out of a can. I was picking up some Dinty Moore Beef Stew today for the rest of the fam to eat for lunch, and noticed a new Armour hash can. On the back it now says Gluten Free!!! I know, most of you will think it's yuck, but I grew up on the stuff and I'm so excited!!!

  12. Thank you for your all of your support. It is nice to know that I'm not the only one that made mistakes in the beginning. On the bright side of things, now that we have identified the culprit she seems to be recovering more quickly than she did in the beginning. She ate better today and seemed a lot less cranky. Hopefully this was only a minor set back!

  13. I would be leary of them "force feeding" her also. Of course I'm not a doctor, but I would think if, and I mean IF, it did work, couldn't that cause her to develop an OVER eating problem? I would think that would be along the same lines as "you must clean your plate before you leave the table." KWIM?

    My DD didn't eat either. We felt like we were force feeding her all of her life until she was gluten free. Really, we weren't, but we were always offering her something hoping to get her to eat. After going gluten free her appetite picked up. But in the beginning, first couple of weeks, she would only eat a lot of certain things. I do not think she fully "trusted" food yet. So we fed her a lot of the things that she would eat like grapes, apples, diced turkey... practically what she lived on up until the last week or so. Now that she is starting to trust food a little more she is more open to eating other things. I don't know if that helps you or not.

    I sure hope your little one starts showing improvement. Sounds like she's having quite a hard time. Could it be that the GI tube is keeping her full so that she doesn't desire to eat? Keep us updated!

  14. So I guess I win this year's worst Mother of the year award. We can't get more than a week and a half without ME glutening my daughter. The past couple of days DD hadn't had much of an appetite at all, which gradually got worse as the day went on last night. She started drinking more again, and by last night was sooooooo super cranky. After she refused to eat her dinner and started fussing again, DH put her in the bath tub. He called me in to look at her tummy and it was incredibly bloated... :( My initial reaction was that it must not be gluten, that the diet wasn't working, and we needed to figure out what else was the problem. But just in case I started re-checking everything she had eaten in the past couple of days. Now... please don't shoot me for this, I already feel bad enough. I had been letting her eat Doritos for two or three days! The thing is, when I grocery shop, I check the label on EVERYTHING before I buy it, even if I have bought it before. But when they Doritos were bought I had sent DH out for them and said I remembered looking at a Frito Lay gluten-free list and I thought Doritos were on that list. When he came home with them I assumed it was ok. Well, DH didn't check the label as I just assumed that he had done. I was FLAT wrong as I am sure you all probably know, but never even thought to check the bag b/c I just thought that DH had already done that and would not have bought them if they were a no-no. I had noticed that my joints had been hurting really bad the past couple of days, I just assumed it was the weather..... I just feel awful, and hopeless at the same time. DD is never going to get healed completely b/c I keep glutening her!!!!

  15. I totally feel for you! It is really hard in the beginning, but you'll get the hang of it. We are only about 3-4 weeks gluten free here. The second week DD was gluten free, I bought a box of cocoa crispies. I had read the label, didn't see anything listed that was a no-no (so I THOUGHT)..... It took a couple of days for a reaction from DD for some reason, maybe she ate more of them the day she had the reaction. She had horrible awful diarrhea with a nasty rash that took days to clea up. I couldn't figure out what I had given her to cause that so started rechecking labels, and looking up ingredients on the net. I was too stupid to realize the malt flavoring in them was derived from barley..... I felt like a terrible mother. Now I bought cocoa pebbles, and she won't touch them. I think she knew the crispies made her sick, so she will not go near anything similar. But, I've learned from it :).

  16. That lady sounds like a psycho!

    I'd probably call the store manager and explain why they just lost my business.

    I wish that were an option... they have the largest selection of gluten-free food in the state :(. Her boss was there though, and promptly got in the gluten free freezer and warmed up a delicious chocolate chip cookie to give me. I think she was pretty miffed. Hopefully that crazy lady got an earful after I left...

  17. Ok, the health food store lady glutened me today. About an hour later I noticed a canker sore inside my mouth, on the same side I was chewing the cracker... coincidence? I've only been gluten free for about 2 weeks, and I was never confirmed Celiac, but we suspect that I am the culprit for my DD's troubles since I was more symptomatic than DH. Do you think just chewing that cracker, even though I spit it out, caused me to get a canker sore??

  18. Ok, I was at my health food store today buying my weekly goodies (they have the largest selection in the state, and boast about it... supposed to be VERY knowledgeable about gluten-free). Anyway, I'm checking out, and there was a lady behind the counter who said, oh! are you Gluten Free? I told her that yes I was, that my entire household is a gluten-free household. She said, Great! I have these crackers I am thinking about ordering, and I would love to get your opinion on them. So she hands me the first one to taste and it was OK, but not that great in my opinion (nearly needed steel teeth to chew it). Anyway, she handed me another cracker, something told me to break a little piece off to try this one. I began to chew it and she says, STOP!!! SPIT IT OUT!! I'M TRYING TO KILL YOU!! (wow... talk about dramatic...). So I'm frantically looking for something to spit it out on and finally another lady handed me a tissue and a cup to go rinse my mouth out with. The lady handed me a cracker that she *thought* was gluten free because it was a rice cracker, then began to read the box as I chewed it and realized that I should not be eating it.... *ugh* Then she quickly followed me into the bathroom with a pill to take that was supposed to make it "ok".... almost made me wonder if she did it on purpose so that she could turn me on to this little pill that supposedly pushes the gluten out of your system faster. I dunno, all I could think was... the gluten is still going to be in my breastmilk, which is half the reason I am gluten free anyway (my DD is 15 months and still nursing, and gluten-free). I never in a million years would have thought about asking her if I could read the box first considering they know all about gluten-free there, and knew I was gluten-free. Moral of the story I guess is NEVER under any circumstances take food from a stranger without first checking the box.....

  19. I KNOW how frustrating this is. I have recently been through the exact same thing myself (DD is also close in age, she is 15 months). After all the negatives, but the reaction we knew she had from gluten, we took her off of it. She has been gluten-free for a week and a half now, and has already gained 12 ozs! It IS frustrating, I felt like I wasted a lot of money too, but you just have to push through and do what is best for your DD.

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