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About sadiesmom

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  1. Thank you all so much for the responses. I really have felt so bad about all of this. You always want to do what is best for your child, you know? it is just so hard when you don't know what that is. I had actually heard as welll that the breastfeeding could be minimizing teh damage that is being done - if indeed she does have a problem with gluten. And I am pretty much for child led weaning - so she'll probably wean here within the next year. I think I will take your suggestions and really do the gluten-free diet and see what happens. She did tell me she had a tummy ache last night - and I swear that kids stool goes from loose and runny to massive size and shaped clumps that I am in amazement could have come from that little body. I guess I always think "oh she doesn't have any othe symptoms." but it might be interesting to see if there are any changes with teh gluten-free diet. Myabe she has had symptoms - that I really have just thought to be normal for her. I really appreciate the stories about going gluten "lite". I knew that really in theory it would not matter - but I wondered if in practice anyone ever noticed anything. Your posts have really helped me alot! Thank you! Amy
  2. I actually had the nutritionist tell me that breastfeeding my daughter beyond one year really wasn't healthy for her or me - and that I really needed to wean so we could see if she really is going to to show signs of celiac or not!
  3. Hello all, My daughter is small and had very low weight gain from 9 months on. This fall the dr sent us to a ped GI who ran tests and did a biopsy. IgG was the only one elevated. The whole panel was done including the genetic markers. Which she does have one of the genetic markers. The biopsy was negative. In March the ped GI said he did not think it to be celiac. Sadie has no other signs just low weight. When the genetic marker came back positive and she still hadn't gained any weight - she was 19 lbs 13 ounces and had been for months as a two year old - he said to try a gluten-free diet. To make a long story short, we tried - and I failed MANY times. I am so ashamed to say this but we did not stick with it well. She had several bouts of stomach flu and wasn't eating so I would be willing to give her anything - even a slice of Wonder bread just to get something down her. So we only did the diet halfway (by that I mean that I didn't buy gluten- but if we were out - she had it - and I am sure there were unknown times she had it too). I was to get her weighed every two weeks. I did - and sometime she gained 8 ounces in one week. MOre than she'd gained in 2 months before. After the two weeks where I was WAY too lazy about the diet - the weight gain would be modest or nothing at all. We saw the ped GI last week and he said there is no way that the gluten is the problem in regards to her weight. A tiny bit would have hurt her. So by not really going all the way with the diet - I could not have seen any results. He said I must have been making up for the loss of carbs with an increase in fats. I am SO ashamed of myself for not doing the diet 100%. It was so hard when they kept telling me that they really didn't think it was celiac. So - she has not gained any weight at all in a month - and we have had a mostly unrestricted diet. I kept thinking that her sudden weight gain just happened and maybe it would happen again and if she was on a gluten-free diet - I might think it was the diet and wrongly assume that she needed to be off gluten. Does anyone have any thoughts on this? By the way - I still breastfeed her. She is 28 months and weighs 22 1/2 pounds. Developmentally she is on target or above. I feel like a horrible mother for not doing 100% gluten-free and now I am confused and not sure why she gained the weight if what the dr said was true about it being impossible for the gluten reduction to have resulted in her weight gain. Amy
  4. I wish I had an answer for you - because it would mean I had an answer for myself. I am in a very similar situation with my 2 1/2 year old daughter. We went to a Ped GI when she was 22 months because of the lose stools and the low weight gain. (She was only about 20 pounds at 2 years old. The blood panel was negative except the hereditary marker which was positive. We even did the biopsy. It was not as bad as i had imagined - but I understand not wanting to do it! That was negative. Her Ped GI told me it was okay to try the gluten-free diet. I never did it well - we avoided most gluten - but I was way too lax and I am sure she got some gluten every day. In spite of that. She started gaining about 1 pound a month. When we just had her checkup I confessed to the doctor that I never did gluten free - but probably more gluten light. He said that it was not the diet then that made the difference and that he was pretty sure it wasn't celiac or a tiny bit of gluten would have made a difference. At any rate - that is where we stand now. I too am afraid of committing to a diet that she doesn't need. And I really hate myself for not just sticking steady to the diet. But I really wanted a positive diagnosis before the diet - and it doesn't look like that is going to happen. I don't really understand gluten intolerance vs celiac. My only understanding is that you treatit the same way with a gluten-free diet. Anyway - I am sorry to not have anwers for you - I just wanted you to know that we were in similar situations and that I understand how difficult it is to manuveur throught all this gray area. Amy
  5. Banana Babies

    Hello, What do you mean when you say "banana baby"? I ask - because the only time I have ever heard that was from Dr. Sears (a pediatrician/author) who uses the term to describe babies who are tall and skinny - instead of the baby chubbiness that most people expect. I didn't realize the term went back several years and I am curious? Thanks, Amy
  6. MJM, ONe of my daughters first foods at 7 months - and favorite food still is avacado. Dr. Sears lists avacado as one of the best first foods you can give a baby. The taste is not strong at all - but avacados are full of really good fats. For my daughter I would cut one in half and scoop out the stuff. When she was not yet able to feed herself I would cut it up into pieces and mash with a fork then spoon to her (it is like guacamole without any seasonings). When she got interested in ding "finger foods". I cut up the avacado into bite size pieces and put them on her tray. They are still very soft and pliable and it gave her good practice at picking up foods. Now that she is older, I mix and avacado with a couple of Tbsp of cream cheese and let her dip crackers (gluten-free) and fruits or veggies in. Or she often will request "wawk - a - molie" (guacamole). Amy
  7. Thank you so much for the responses. I just went ahead and printed off the posts and highlighted all the ideas. Thank you so much ! I am feeling pretty overwhelmed right now. I was getting ready to make a cake this week and went through all the info on frosting (Duncan Hines) and really got discouraged. I do have another question if you don't mind. One of the things that Sadie has loved the most was the Gerber Graduate series of toddler foods. In particular she like the meat/chicken/turkey sticks. On the label it says modified corn starch. That is okay, right? I did not see anything else suspect. She also likes some of the entrees (turkey, mashed potatoes) and stews (white turkey). The only thing I see listed is the corn starch. I know the pasta and ravioli ones are out - but I wondered about the meat sticks and the other non pasta dinners. SHe doesn't eat them alot but - it is something nice to have on the shelf or in the diaper bag for an emergency. I think the meat sticks are like vienna sausages - which I thougth to be safe. Do you guys know anything about the gerber stuff? Thanks, Amy
  8. I posted a couple of days ago about my 2 year old being gluten-free for only 10 days - most of which she was puny and sick and how her weight jumped up in spite of the sickness. I spoke with the ped GI nurse practitioner and she said that the changes in toddlers can be drastic and quick - so the only way to know was to stay on the diet. While on the phone - I asked her about Metformin. My general doctor (who is Sadie's DR too ) wanted to put me on metformin for insulin resistance but would not do so while I was still breastfeeding. Even though the current research shows that it is okay to BF and take the drug (especially at this point as she is older). So I asked the Ped Gi nurse practioner to ask the Ped GI about it because I think it will come up again with my regular Dr. She was surprised and said - "You have insulin resistance and hypothyroidism?" I said yes. She then asked if she could ask me a personal question. She asked if I had trouble getting and staying pregnant. I had 4 miscarriages and it took me a year of trying to have Sadie. So - she says to let her ask about the metformin and she'll call right back. She calls back 5 minutes later and says - that the Ped Gi says the metformin would not be a problem but that I probably won't end up needing it if I get and stay on a gluten-free diet - because he said he would bet anything that I have celiac. He said that I should get the panel done and see what that said - but because we already know that she has the genetic marker - most likely she got it from me. Interesting that after months of he-hawing around ...SNAP...he can just diagnose over the phone. And he isn;t even my doctor. Anyway - we are going back to being strictly on the gluten-free diet. At some point someone on here said they had a toddler and there were some posts about gluten-free brand name foods that are okay and that toddlers like. I can't find the post. Is that person still out there? Thanks, Amy
  9. I am so glad you guys are talking about this topic. We are currently trying to get an accurate diagnosis of my 2 year old daughter who still breastfeeds. She tested positive for one of the genetic markers, but all of her bloodwork (except a 40 on her IgG) have come back okay. Even the biopsy was okay. But she is very tiny. She weighs slightly over 20 pounds at 2 years old. Around 8 months - which was when we really began solids - she literally fell off the growth charts. The doctor said that it is a possibilty that the breastmilk was continuing to protect her from the damage that gluten could cause to her. I can't breastfeed her forever though! I was only BF for 6 weeks - and while I have never been tested for celiac - when I was Sadie's age I was diagnosed with faliture to thrive, I was very sickly, whiny and they tested me for CF and everything else. It would not surprise me if I do have it. And I felt better being gluten-free this past week - because if I continue to BF I have to be gluten-free too. Breastfeeding has been a wonderful experience for me but I know for some women it is not. There is so much that is misunderstood about it and our culture is very much set up to promote early weaning. Amy
  10. Thank you for the info on the chicken nuggets. I had bought chicken tenders and a can of some type of gluten-free corn crumbs that I knew I could make my own - but frozen are SO much easier. I will get some. I started out really well with the diet for teh first week - and we were sick - so not eating much anyway. But then I began to panic when she would not start eating again. And of course - family members are saying "if you restrict her diet she will never gain weight and may start losing!" So with all of that - I caved and let her have pretty much what she wanted for the past 4 days. I think I will probably have to on it longer to know for sure. 4 pounds is incredible for you son! Thank you, Amy
  11. Hello - I posted a couple of months ago about my daughter who was 22 months. She turned 2 yesterday. Her only symptom has been very slow weight gain. For that we were sent to a ped GI who did a million and one tests and a biopsy. Biopsy, stools, urine, and blood came back with no malaborption or damage (IgG was at 40 though that was the original bloodwork that sent us to the ped GI). However, Sadie on Nov 1 weighed 19 lbs 13oz. On Jan 10 she weighed 19 lbs 15 oz. The PEd GI said she did not have celiac because of the bloodwork and the biopsy. However, after reading many of your stories - I thought about trying the gluten-free diet anyway because the lack of weight gain wa so dramatic. The nurse told me the diet was too extreme to just try out (I said REALLY? I think that knocking out a baby and sticking a tube down her throat and taking gallons of blood from her is more extreme that a diet!)Before I could try the diet, the Ped GI called to say that she does have one of the genetic markers for celiac. And then they recommended (and I am not sure if they did this because I was being a crazed ranting mother on the phone or if they really thought it would be a good idea) that we go gluten-free for 2 months and see what happens. He said that there might be a lack of damage because Sadie still breastfeeds. What do you think about that - could breastmilk be making it hard to get an accurate diagnosis? So - Monday Febraury 12th we started the diet. The same day she and I got a stomach flu that wrecked us for 3 days. I went back to eating gluten-free after that - but she would not eat at all. After 2 days I decided she had to eat something. I asked her what she wanted and she said chicken nuggets. I felt so desperate I ran out and got Wendys nuggets and she ate them. I decided that I was going to lay off the strict gluten-free diet with her until she was over this flu. But, for the most part she still at very little if any glutened bread and pasta. So today I take her to get weighed and she is 20 lbs 6 oz. This is my question - sorry it took so long to get here - In the month and a half since last being weighed she gained 7 ounces. That is high for her. I can't believe that the past 10 days on a not so strict gluten-free diet - while being sick and barely eating anything - have helped her to gain that weight. What do you think? Are those 7 ounces just something she must have gained since Jan 10 or has removing some of the gluten in her diet for 10 days cause this dramatic gain? I so wish I would have got her wieghed on Monda Feb 12th when we started - but that was the day she got sick and was too sick to take out. Sorry this is so long - I am just so frustrated with teh Dr and the lack of diagnosis. Thanks, Amy
  12. Hello all, I wrote a month ago that my daughters IGG test came back at 40 when the doctor said it should be under 11 and oculd possibly indicate celiac. We went to the pediatric GI. He was concerned about her weight ( she is around 20 pounds at 22 months). He ordered stool tests, urine, nutritional blood panel, etc...all of these came back normal. We wanted to do the biopsy - and we reluctantly agreed. There was no damage seen and the biopsy was normal. So - here is my dilema. The nurse calls me last week with the results of the biopsy. She says everything is normal. I said - so you are sure it isn't celiac? She said that they are pretty sure based on her tests. I dig further by asking about the blood work. In Sadie's original test she has the IGG(which was too high) and the IGA (which was normal). I thought there was a 3rd test called a ttg that should have been taken. The first doctor did not take it and apparently neither did the ped GI even though he took at least a gallon of blood from her. The nurse said that no ttg was ordered. She also said that she was surpised to see that no heredity marker (?) test was ordered. So at this point - I am furious. Going through all of this. She said that she would order the ttg and I can go get more blood taken from Sadie. It was my understanding that the ttg was a pretty good indicator of celiac. i am thinking that if that is positive (and then with the positve IGG) she has celiac even though the biospy looked fine. Is that correct? I guess what I want to know is if the ttg is important to get. I have thought about just putting her on the diet. But we've already done the worst (with the biopsy). And I am afraid that if I got her off gluten I would have to put her back on for the blood test. What do you all think? Is the ttg test as important as I thought it was. I have also asked the doctor why the IGG would be elevated if not celiac. He said he was testing for all sorts of malabsorption and infection and found nothing. I am extremely frustrated. I don't want to put her through more blood work if the results of the ttg aren't going to matter one way or another. Thanks, Amy
  13. Thank you all so much. This has been so overwhelming and coming on for a long time. I had read about celiac disease and it was always in the back of my mind as that could be what was wrong with her slow weight gain and really odd bowel movements. You are so encouraging - and I am so impressed by the wealth of information on this board. Every chance I get I have written down foods that I see you mention as okay or not okay. It will take me weeks to pour through all the info - but Sadie is worth it. Also - thanks for the support on breastfeeding. Being 21 months - I have gotten some flack from our DR and even the Lactation consultant. The attitude is like "well it's okay to keep going - but she is old enough to stop". And of course she can stop anytime she wants. I have actually fed her on demand since her birth. When everyone else was reporting that their toddlers were only nursing at night or in the morning. Sadie would and still will nurse a couple of times a day on many occasions. Now - I am wondering if she needed it and if she might have had much more trouble with her weight and development if I had weaned her. I guess she knew what was best for her. So we'll keep going for now. And I really appreciate your support because I undertand that many people think it odd to still be nursing a toddler. I guess I can take a deep breath now. I have whole list of questions to ask at her doctors appointment. I am so glad to have found this site. I hope to get a better handle on things in the coming months. Thank you so much! Amy
  14. Hello, I know you all get tons of questions from new people and you have been so kind. I am so glad I happened across this board because I am really confused and scared. My daughter Sadie is 21 months old. She was 6pounds 13 ouces at birth and gained very well within the first half of her life - but then slowed. I breastfeed her and still do - even at 21 months. She has a good appetite - but only weighs 20 pounds which puts her well below the charts. Our doctor - has ran CAT scans and some blood to see what might be keeping her small. This month she ran more blood and the nurse called me yesterday to say that Sadie's antibodies came back elevated. Something about IgG and that the would like to see an 11 - but Sadie was a 40. They thought celiac sprue and recommended a ped gastro. So we have the appointment for Nov 28 - but in the meantime I am freaking out. Having read through some of the symptoms - Sadie has exhibited a couple. She is smaller than expected, and her stools not solid. I always thought it was the breastfeeding - although celiac was always in the back of my mind. She also seems to pass things (chunks of fruit or veggies) REALLY quickly. I know being a toddler she might still have undigested bits - but these shoot out in about 2 hours. She is a reasonably happy baby and developmentally she is above target in most things. Which is why we figured she was just small. She does have a lot of trouble sleeping. I feel absolutely like the worst mother on earth that she might be uncomfortable or hurting all this time. My questions are these: Does what the nurse told me on the phone pretty much identify celiac? Is it possible she will have to have a biopsy as well? Is breastfeeding still ok? I am guessing I will need to cut out gluten if she does. I know many people wean at 1 year old - but she just didn't want to and she still nurses alot. Our appointment is at the end of this month - in the meantime should I continue with her normal diet. I don't want to do anything to mess up further testing - but I don't want to be hurting her or causing more damage? Thank you so much for reading this. I know we will be alright if it turns out to be celiac - I am just scared and don't like being in limbo. Amy
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