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Dianne W.

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About Dianne W.

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  1. I give my son Amaranth O's and Amaranth Snaps made by Nu-World Foods (http://www.nuworldfoods.com/cart/products.asp?grouping_id=2). The Snaps are made of just organic amaranth and tapioca starch and the O's are made from amaranth, sorghum flour, and beet fiber (the ingredient list on the website is out of date - this is the ingredient list from the side of the box I just got in my latest shipment). I don't know what other things you are having to avoid, but my son is gluten/dairy/soy intolerant, so non-messy cracker-like finger foods are still a vital necessity for us. I really needed to find something to be able to carry with me in the diaper bag and give to him when waiting in line or at an appt, etc. Plus he always was trying to reach for his sister's crackers and obviously couldn't have them. I used to find these cereals at Wild Oats, but now they always seem to be out of stock. So, I just call the company and order directly from them. (Fast shipping, by the way.) Also - I would give him bits of sweet potatoes but they were too slippery and hard for him to grasp. So I started cutting raw sweet potatos into hash brown sized pieces and spread them on a cookie sheet and would bake them in the oven until cooked thoroughly. Then he could easily pick them up and eat them without them squishing all over. Gerber has freeze dried apples bits. Be aware, they will likely come out intact in your little one's poos since babies gum them and then swallow them whole. Hope this helps. Dianne
  2. We did the EnteroLab stool test on my son when he was 13 mths old. He had been gluten-free for 4 mths by that point (breastfed, so I had changed my diet), but that didn't matter as the IgA antibodies are detected by the stool test even gluten-free for a year or two (if I remember right). The test couldn't have been easier - just dumping the stool from the diaper into their container! They sent the collection kit (a big Cool-Whip type container and a big ziplock). We had to collect stool from several diapers to have enough quantity. The instructions told us simply to stick the container in the freezer in between collections. The results proved what we already knew from our elimination diet - intolerances to milk, soy, and gluten. And the gene test showed gluten sensitivity [HLA-DQ 2,3 (Subtype 2,7)] - but I really don't fully understand the full explanation. I am very glad we did the EnteroLab test. It was helpful to me to have our suspicions validated. And I have no intention of putting my son back on gluten to do the blood test...not at least until he is much older and can express his feelings with words instead of non-stop crying. Best wishes, Dianne
  3. Just another thought - have you checked the ingredients of any vitamins, supplements, meds you are taking? What about meds your dd is on? Are they all gluten-free? It is easy to overlook these things sometimes.
  4. I haven't been able to prove/disprove Rice Dream as affecting my son through my milk. I have stopped using it, though, just to be on the safe side. But I can tell you what did affect him through my milk. I was on strict TED for three weeks and he was doing fine. (He was exclusively nursing at that point - no solids for him yet.) I had been eating Erewhon Crispy Rice cereal each night as a "dessert" (ingredients: Organic Brown Rice, Organic Brown Rice Syrup, Sea Salt) and unintentionally bought the non-gluten-free type (ingredients: Organic Brown Rice, Organic Barley Malt, Sea Salt). I ate that four nights in a row and that fourth night my son was MISERABLE. It was completely obvious that it had to be the gluten passing through my milk to him since that was absolutely the only change in my diet. That really shocked me to think of how little gluten I had eaten (compared to my previous diet of gluten filled foods) and how big of an impact it had on him...through my breastmilk. Now I am SUPER careful of being gluten-free.
  5. My daughter (no food / gluten issues) will also be four in November. She sometimes is too busy playing and will start complaining of a tummy ache. I remind her to go to the bathroom which 99.9% of the time solves the issue. Thought I'd mention it - agreeing with you that the "full bladder = tummy ache" issue might just be a "too busy to stop and go to the bathroom" thing rather than a gluten thing. I also was going to mention Vance's DariFree potato milk as a dairy/soy/rice/almond milk alternative.
  6. Thanks for providing a recipe, since various gripe waters and "colic" tea solutions can be expensive. But, please, please, please be careful of grouping all distressed infants as just having "colic". I know you have experience with babies since you have a day care, but some babies are in pain for genuine reasons - reflux (needing medical treatment), milk protein intolerance (needing mom's diet to change or needing specialized formulas), or gluten intolerance (which you obviously realize cannot be "solved" by caraway tea). These babies have often been misdiagnosed by doctors as having "colic" and their overwhelmed, exhausted, frustrated parents have already been told again and again that their baby will grow out of it! Some babies do stop being so fussy as they get a bit older and they get used to being alive and their disgestive and nervous systems matures, but others are truly sick - and no one recognizes that except for the parents! Just as frustrating as it must be for you to have friends or relatives or restaurant employees minimize your concerns about gluten or cross-contamination issues, it is just as frustrating for parents of genuinely distressed infants to be told that teas, or gripe waters, or swaddling, or shushing will make their crying baby feel better. That may work for normal infants who simply have a bit of a hard time coping with life, but as you can tell - it didn't do anything for my son. We bought so many types of gripe water. We tried teas. We tried belly bands. We tried swaddling, shushing, swaying. He cried and was in obvious digestive distress for about 80% of the day for 7.5 months until Finally we learned that he was intolerant of the milk/soy/gluten that I was eating and passing to him in my milk. I apologize for getting on my "soapbox" this morning. I hope I haven't offended you. I just know how passionate everyone on this board is about the frustrations of having gluten intolerance and cross contamination minimized by others since it is definitely a real problem. That is also how passionate I am about grouping all fussy babies as having "colic"! OK, I'm off my "soapbox" and I hope everyone has a great day. :-) Dianne
  7. Barbara, I'm sorry your daughter is having so much nighttime pain - and that you are not getting sleep either! I DEFINITELY understand what you are going through!! Likely foods (and/or reflux) are definitely affecting her. 1. I stopped using Rice Dream due to the things I've read in the past about the small gluten content. The link that Susan posted didn't take me anywhere so I don't know what the newest information is. But, I switched to either the Pacific rice milk or the Hannaford rice milk (it is the store brand at my local Sweetbay grocery store). I don't know if the small amount of gluten in Rice Dream is actually a problem for my son or not, but I decided to stop taking that chance. I have not added tree nuts to my diet yet so I don't know how my son would do on Almond milk. If you are able to do potatos, there is a potato milk that some use ("Vance's DariFree Fat-Free Non-Dairy Milk Alternative from Potatoes" - http://www.vancesfoods.com/darifree.htm). I am planning on trying that soon, but haven't gotten around to it yet. 2. My son is has MFPI (multiple food protein intolerance) and is intolerant of milk, soy, and gluten. He also had a slightly elevated RAST allergy test result for peanuts. So, I personally have chosen to stay away from eating all legumes and even including green beans. According to WebMD: "Soybeans are legumes. Other foods in the legume family include navy beans, kidney beans, string beans, black beans, pinto beans, chickpeas (garbanzo or chichi beans), lentils, carob, licorice and peanuts." 3. Congrats on continuing to breastfeed through all of this. Even though it might be hard to deal with your diet and hers at the same time, at least you can comfort her through the nighttime gas pain and sucking often helps pass the gas. (My son has never taken a pacifier, so sucking on it hasn't been an option.) 4. Let me point you to some other areas of possible help: (1) The book "Colic Solved" by Dr. Bryan Vartabedian (www.colicsolved.com) is a Must Read in my opinion. He is a ped GI who specializes in dealing with "colicky" babies. I sat there and SOBBED as I read the first pages. It was such validation to me to read a doctor saying what I already knew - there is no disease called "colic" so "colic" can NEVER be a diagnosis!! Colic is a description of symptoms. A baby can, of course, have a high-needs temperament and need extra swaddling or shushing or swaying. But babies like ours are in pain - typically due to misdiagnosed reflux and/or milk (or other) protein intolerances and are in need of medicines or diet changes to truly solve their "colic". I just wish that this book had been in print 18 months ago when I really needed it! (2) A new non-profit organization has been formed to provide information and support for parents of protein intolerant children (PIC). It is called The PIC Foundation and the website is www.thepicfoundation.org. On the Parents Connections tab, the 1st and 4th links are especially helpful (a MSPI forum and a reflux forum). And on the Breastfeeding tab, there are some links to information, recipes, product info, etc., that some of us have compiled about surviving on a limited TED diet. I would highly encourage you to check out these links and post questions on those two forums. (3) Some of the moms on the MSPI forum have been discussing the success they have had with their little ones after starting them on digestive enzymes. One of the moms posted information about huge improvements in her son that has made me interested in pursuing getting my son onto digestive enzymes. From what I've read, digestive enzymes can't hurt, and can maybe help. I guess I'll see...I just need to go purchase some and get started. :-) http://www.quicktopic.com/23/H/aSxbbAkUULVMX/m9996 is the one post I was referring to and then http://www.quicktopic.com/23/H/aSxbbAkUULVMX/m10007 and http://www.quicktopic.com/23/H/aSxbbAkUULVMX/m10008 have additional information. As an update about my son, his night wakings are definitely not gone yet. But about 3 weeks ago, he slept all the way through the night one night and then last night I only had to help him once! (He passed two or three toots while nursing at 2:15 and then stayed asleep till morning - yeah!) Of course, the night before last, I was probably up with him every 45-60 mins from 2-6 AM...! But, I think some of these most recent wakings could also be teething pain as well as gas pain. I've been trying to make myself wait longer before going in to get him when he starts crying. I don't want him to wake the whole house with his crying, but I have been finding that sometimes he is able to settle himself (by passing gas, I assume) after flopping all around for a bit longer than I was allowing before. Of course, he is 18 months and your little one is only 9 months so it is a different issue. About the massage - I found it beneficial to get him used to being massaged during the day so that he was more OK with it at night. After some of his daytime diaper changes, I would keep him on the changing table and massage his belly. I use the palm of my hand and rub in a spiral - starting at his belly button going clockwise and getting bigger from there. At night when he is suffering from his terrible gas pain, there is NO WAY he will let my put him on the bed and massage him - not at all! But, while I'm nursing him, I can sort of do a massage on at least part of his belly. Some nights he will let me do that and I think it helps the gas move down and out. Other nights, he grabs my hand and pulls it away from his belly very purposefully. It must hurt worse, I guess. For a while I was trying to massage him after his "just before bed" diaper change. I've stopped doing that because I think the massage at that time was directly tied into him having really bad gas episode about an hour after going to bed. Maybe it was moving the gas too much. About the bouncing and walking - it did help for a long time. He would eventually pass gas that way that wasn't coming out any other way. I also would hold him with his back to mine chest and my arms under his bottom - and gradually bring my arms to the backs of his knees - thus compressing his knees to his chest. That position would help too while walking. But now, he is just way too heavy for me to bounce with him for any length of time while I am so groggy and sleepy in the wee hours of the night. (He's around 28-30 lbs.) But, in the MANY months of doing that, I learned to put my daughter's foam 2-ft square interlocking play mats on our wood floors in his room to make the bouncing easier on my feet and knees. I also bought a pair of slip-on style sneakers and put my arch supports in them. When I would climb out of bed, I put them on immediately so that as I'm walking/bouncing on our wood floors, I had the springy cushioning of the sneakers and the support from the arch supports. Those two things really helped ME survive even if they didn't help him get rid of the gas. Another gas removing position I have found recently is to sit in the rocking chair (it is a true rocking chair, not a glider) with his back to my chest. As I rock forward, I actively lean forward while also raising my knees up. Then as I rock back, I kind of stretch him out a bit. This compressing - stretching pattern seems to help him pass some gas sometimes. Unfortunately, he has really associated the rocking chair with nursing and wants Nothing to do with sitting there in any position other than to nurse. I have to pretty firmly hold him upright in my lap until he relaxes into the rocking motion (singing softly at the same time, too). :-) I hope that some of this information is of help to you. At least, through your internet research and finding message boards like this one, you know that you are NOT alone! I'm glad you sent me a PM since I haven't checked this board in a little while. I am glad to share what I know with you and hope at least some of it helps. I will try to check in on this forum regularly for a while. But feel free to PM me anytime if you want so that I get the notification into my personal email. Hang in there! Dianne
  8. Does he pass the gas freely or is it hard for him to expel? If it is hard to pass it, is there anything you do that makes it less painful for him? Thanks, Dianne
  9. I nursed my dd until she weaned herself at 18 months (probably because I got pregnant and the milk tasted different or something). Weaning my son is not an option at this point because it is the only way I can survive his nighttime pain. Last night, for example, he woke 8 times (!!) between 10:30-7:15. A few times he was able to pass some gas, but most of the time I was just too tired and foggy to even hold him without fear of dropping him - let alone purposely bounce up and down to move the gas. Sometimes the sucking of nursing helps him pass gas, but usually I think it just "drugs" him into a level of sleep that he doesn't realize his tummy hurts. Well, at least until he wakes again in an hour or so. I wish he would let me nurse him in bed but he just flops around like a wet fish. Thank goodness the rocking chair is comfortable for me to snooze in until he nurses himself deeply asleep.
  10. I used Optimum Health Resources to get my son's ELISA tests....but I would NOT recommend them based on how long it took to get the results. Also, after using them, I started reading here on this site about how many others have had negative experiences with them. The results of the OHR test seem to be on target, but it took so long to get the results despite repeated phone calls. They were also supposed to send me the results and some supporting documentation via Snail Mail which I've never gotten. In my research about OHR, I saw several people recommending USBioTek but you have to go through your doctor for this company. Here is a link to their list of tests http://www.usbiotek.com/CompleteTestList.htm. Hope this helps. Dianne
  11. I would appreciate anyone's help with this. The nights are sooooo long. He wakes every hour or so struggling to pass gas. I had posted this in the "Coping With" forum and got the two responses above. Then I decided it really did belong in the "Children and Babies" forum and posted a new message last night. But it didn't get pinned apparently. Now this message from the other forum has ended up over here in the Children and Babies forum. No matter where the message is....I'd love some ideas on how to cope better through these nights. Thanks! Dianne
  12. Hi, I posted a message last night to the Babies and Children section but I can't find it there. Yet, I can see it when I click on my user name and see my profile. Why isn't it showing up in the Babies and Children section? Is it not being shown because it is too similar to the question I posted in the Coping With section? (I realized that my question really did belong in the Babies and Children section after posting it in the Coping With section. Sorry about that.) Thanks for your help, Dianne
  13. I know from my personal experience that my son reacts when exposed to gluten through my diet (I'm breastfeeding). I also know that he has milk intolerance (actually MSPI). If you choose to try eliminating milk from your diet, make sure to look for the "hidden dairy" (just like looking for the hidden gluten, you have to read labels!). There are good lists of "hidden" versions of the top 8 allergens on the following site but you have to scroll down a bit to get to the lists (http://www.wholesomebabyfood.com/allergy.htm) HTH. Hang in there! And congrats on your new little one!
  14. I know from my personal experience that YES, a baby can be affected by gluten through breastmilk. I was on an extremely strict elimination diet trying to find out what was bothering my son. When he suddenly started having a reaction after days of being fine, I was easily able to pinpoint the problem as the non-gluten-free Erewhon Crispy Rice cereal I had bought by accident (instead of the gluten-free box). There was no other variation in my diet, meds, or personal care products...and he was not eating any solids at that time. So his reaction was completely in connection with my gluten intake.
  15. We spent an absolutely miserable 6-1/2 months trying to convince our ped that my newborn son was not simply "colicky". It turns out that he has reflux and that he is intolerant of milk, soy, and gluten. All of these were passed through my breastmilk. Nearly a year later, he's doing great except for accidental glutening as he explores his world. If you or your sister are doing additional research online, some great sites can be found about infant reflux and also MSPI (milk soy protein intolerance). PM me if you want some specific sites (I think I've found 'em all in my attempts to figure out how to help my son.) About two months ago, I also discovered a book called "Colic Solved" (colicsolved.com) by a ped-GI who makes the point that "colic" is a description of symptoms, not a diagnosis. Some babies do have high-need temperaments and just need extra attention/cuddling, but many "colicky" babies are in pain and can't tell us in any other way. When I found this book, I sat there and sobbed since I realized that someone finally understood what we had been saying all along! I wished it had come earlier, but I finally felt validated in my concerns and guided in understanding what I needed to do as a parent of a "colicky" (how I hate that word) little one. If your sister's little one is dx'ed as having reflux, check out marci-kids.com about proper med dosing for infants since they metabolize meds faster and actually need higher doses to get out of pain. (Opposite from what you'd think - "little baby, less meds".) If your sister determines her little one is intolerant of milk and soy, there are formulas like Alimentum and Nutramigen (with broken-down milk proteins) and Neocate and Elecare (amino-acid based formulas). But the other poster is right that the only corn-free formula seems to be liquid Alimentum Ready to Feed (RTF). Give your sister an extra hug from me. She should be enjoying her little one's precious newborn days, not struggling to survive them. Tell her to hang in there and know that she is not alone!!
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