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ashlee's_mom

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  1. Hi, I am still pretty new to this, so when I took my daughter to the doctor the other evening thinking she had Strep, I was wondering how I make sure the prescription meds don't contain gluten. Will the pharacist know, or will I still have to talk to the manufacturer, and then do you call the doctor and ask for a new prescription if it does and start all over? Luckily she didn't have anything but a virus, but it did make me aware that I should know how to do all this before it comes up for real! Has anyone run into problems with the common children's antibiotics, like Ammoxicilin? What about switching to generic when available? Thanks so much!

    Michelle


  2. mdixon,

    The first thing we noticed with our daughter was her slow growth, but since she is much younger, she has more time to catch up. We had first researced Growth Hormone Deficiency and in doing that I found that it is possible to hold off puberty in order to let the growth catch up before her bones fuse and it is too late. It definately has it's drawbacks (it may be hard on her to see friends develop before her, and I'm sure there are medical considerations) but you may want to discuss it with your doctor and make the best decision for her. If you feel she is lacking so much height that it could affect her throughout life, it may be worth considering. Just a thought!


  3. Hi Mel,

    I had heard 6 weeks, and it took Ashlee about that long to get those "regular poopies" so that is what we went with. I also went gradually. I had heard that hard cheese and yogurt are easier to digest, so we started with just a little bit of those and over several weeks worked our way up. When I finally gave her plain milk I olny gave her a couple ounces at a time and only with food. Now she is pretty much back to normal! She doesn't want to live off milk like she did before, but I think she was pretty much doing that because milk was one of the few things in her old diet that didn't have gluten in it! Good luck!

    Michelle


  4. Hi Mel, I know how frustrating it is to have to limit the diet so drastically and not see the improvement. I too had heard stories of improvement in days, and when I didn't see it, I was very frustrated! It took about 2 weeks to see any real improment in my 4-1/2 yr old, but then it was amazing! The diarrhea slowed down, though it continued fairly regularly until about 6 weeks gluten-free. She did start getting a bigger appetite then she had had in her life though! She also started acting healthier, she wanted to play more, and felt better. I know it is hard, but keep it up and you will see results. Also keep an eye out for anything that could be causing cross contamination just to be safe!

    Michelle


  5. Hi Jen, I agree that you are looking in the right direction here! I think you have gotten some great advice, I would like to add that you might have to educate your ped about celiacs. My daughter was having extremely slow growth, but everyone assured me it could't be celiac disease. Unfortunately, she had to get extremely sick (the diarrhea did come eventually!) and lethargic before we were able to get her to the RIGHT specialist who could diagnose her. I later sent some information to our Ped who is ordering Danna Korn's book for the ped office now! Just be prepared to have to put up a fight, and don't let the Ped reassure you without doing tests! If it is celiac disease, it would be much better to find out now then to have him get really sick. Hang in there, you are doing the right thing!

    Michelle


  6. I would probably put everyone but the 2 year old back on gluten until you can get tested. I think it would be easier now then in a couple weeks once you are getting used to being gluten-free, and the tests won't be accurate if you don't have enough gluten in your diet. Especially with the siblings, I would want to know! I don't know much about what tests to ask for though, hopefully someone else can help out there! Is there anyone who is filling in for your Dr. you can use without causing a problem in your insurance? Just a thought! Good luck!


  7. RaeAnn, thanks for all the recipes. I tried cornbread and white bread yesterday. Ashlee really liked the cornbread, but we didn't try the white bread, I don't know if it rose at all. The recipe said it would be like thick cake batter, but mine was more like play-dough! Oh well, pick up and move on, the cornbread was easy! Can I get your recipe for your bread too?

    No, I am nowhere near Chicago! I live in Oregon and will be moving to Texas! I wonder if anyone else does it? I don't know if I could get my husband tested even if it were free, but it would be worth a try! I have thought that if I have a positive blood test, combined with Ashlee's case, I would just go gluten-free. I'm hoping once we get settled in Texas we might have better insurance and I can get tested cheaper.

    Well, we tried pork chops with herb gravey last night. It was pretty good! My one year old loved it! (and he doesn't even have to be gluten-free!) I think he ate a whole pork chop! Tonight we are taking a break from the new stuff and having taco salad. Maybe I will try making my own tortilla chips though, thanks to RaeAnn! I told my husband I am turning into a better gluten-free cook then I ever was before! Once you lose that crutch of easy meals, you are forced to learn!

    Have a great day ladies!

    Michelle


  8. Paula, I didn't realize you had tested positive on your blood test. I am wondering if my husband or I have it, but we are still trying to pay for all Ashlee's testing and since we don't show signs it will have to wait a bit. I would think that your reaction is pretty clear though huh? We haven't gone gluten-free, but we are trying to find gluten-free dinner ideas since I don't like cooking 2 meals each night! We did stir-fry last night. It was fun, my husband likes cooking that type of thing, and we found some rice noodles that were really good. I would use them in place of angel hair pasta too. I am trying quite a few new recipes this week, so I will let you know what I think of them. I have the incredible edible gluten free cookbook (somewhere in there something about kids too)! I have liked what I have used out of there, but most contains dairy so it had been off-limits until now. The stir-fry was pretty easy, especially if you cut up the veggies before hand it would be quick. Ashlee loved that we were all eating the same thing! Sorry, not much help on a cake. I made the carrot cake out of that book, it seemed best really fresh, but I hear there are great cake mixes out there. There are also recipes in that book for one too, I just haven't used it. I did find that Pillsbury cream cheese frosting was gluten-free (and lactose free, they use soy) so that was good. Ashlee was happy to eat plain frosting when everyone else ate cupcakes! That was before I found the carrot cake that was dairy free! See, there are sometimes we can "cheat" and still use packaged food!

    It is frustrating trying to figure out where that gluten could have come from huh? I called on the shampoo and everything, it all seems fine, but I am waiting to hear back from the lotion. Well, I still need to bake that bread, better get going!

    Michelle


  9. Good morning,

    RaeAnn, thanks for the advice. I checked on her toothpaste, but I do need to check on the shampoo and lotion. I read the ingrediants and didn't see anything, but that doesn't mean much does it! The good news is that she hasn't had any diarrhea since Friday. I know they say that cheese is easier on the lactose, but my mom is severely lactose intollerant, and she can't have any (unless she takes Lact-aid). I have started baking with milk, I made her some pancakes yesterday and she was fine, so I am going to attempt bread today!! What tortillas do you make? Ashlee won't eat the corn tortillas, that would be too easy! I really think everything she is eating is gluten-free, I worry that it is cross contamination. I am really careful, but between cooking for us, her little brother, and the daycare kids, I am wondering if I have goofed somewhere. The nurse kept assuring me that it sounds like it is just taking her body awhile to heal though. I don't know, if it happens less and less frequently like it is starting to, maybe we are on the right track. It doesn't have quite the stench they had before either, though when she has it, it is really watery still. The more gluten-free meals I can make that the whole family likes, the easier it will be, and letting her have dairy opens that window a bit, so maybe it will help. We are moving in 7 weeks, and I won't be doing daycare anymore, so I think that will be a a huge help!

    When is your biopsy, Paula? That is interesting that reintroducing gluten is causing a reaction (but it sounds painful!). I haven't been able to be checked yet, so I find that really interesting. I know my mom doesn't have it, but other than that, I don't think anyone else in the family has gotten checked yet.


  10. RaeAnn, are you sure your daughter's constipation isn't related to potty training? Sometimes it can happen. We haven't had any with Ashlee, but who knows, I think it can be tied in with celiac disease. Evelyn's symptoms sound a lot like Ashlee was like, but hers started slower. First we noticed slow growth for a while. When she turned 3 we thought it was strange that she didn't fit into a 3T yet, she had always hit right on before, but we just figured she was due for a growth spurt, only it never came! She grew a little, but not normally. Then in Feb she got the diarrhea. About 4-6 times a day and she started getting really lethargic and skinny and pale. She didn't really have the attitude that people talk about, but she has always been VERY shy. I have noticed her being more outgoing with kids now, so I think part of that anyway was tied to the Celiac. I really believe our kids will make up for lost growth! I think it might just go slowly over time. I figure if Ashlee got back up to the 50th% where she was as a baby it would mean growing like 6 inches in a year. It might be better for them if it is spread out more over time!

    Paula, I think I am in the same boat being tied to the kitchen all day! Only I haven't started baking really since we completely cut dairy out of her diet. I didn't want to have to go through all that and have it taste funny with some other substitue in there. I think the diarrhea is finally slowing down, so I am starting to reintroduce dairy. Luckily she was happy eating the same porcupine meatballs day after day and deviled eggs, so it made it easy for awhile, but she is starting to want more variety! I think it helps to make a bunch and freeze some, but the bottom line is, I am really missing easy junk food! Oh well, I guess I had to learn to cook sometime! :P

    Oh no, she just had diarrhea again! It is so frustrating, it is never more then once a day, and she will go several days in a row without any, then get it again. This time it was right after cheese though, I hope she does not have a permanent lactose intollerance. That one would really be hard, I keep telling her all the things she can have once she can have dairy again, so she would really miss it. After 6 weeks gluten-free shouldn't the diarrhea be gone? It frustrates me that so much varies person to person, I really like things black and white!

    Michelle


  11. Hi, I am pretty new to all this, but I saw gum base listed on the forbidden ingrediants, but I have seen Wrigley's gum on safe lists, and it has gum base as an ingrediant (as I would assume all gum would). Not that gum is a huge issue, I just don't understand, this would be so much easier if there were clear lines to gluten-free or not!! Can anyone explain?

    Michelle


  12. Thanks for the imput. I decided to put it off a few weeks to see what is going on with the diarrhea, it seems to stop, and then starts back again. I really didn't want him to say to wait a few weeks and come back again! I am thinking up some more questions for him too, so we will get our money's worth out of the visit! I figure after waiting so long for a doctor to take us seriously, I better take him seriously too! Oh, RaeAnn, my daughter is 4-1/2, how old is your's?

    Michelle


  13. I just wanted to add that we did not see much difference in our daughter at first, but after a few weeks her appetite came back with a vengence and she put on weight quickly. Untill then we mainly got calories and nutrition in using Pediasure. You didn't mention if you are using that (or Ensure or boost) but you might want to try. It seemed easy to digest. Ashlee is still off all dairy, I had head 6 weeks, so we are about to try easing it back in. We also noticed that oranges and orange juice seem to upset her stomach. There is some vitamin deficeincy that causes a small appetite, I think it is magnesium, and since the absorbtion is so damaged, it makes sense that it kind of takes a while for everything to get back in order. I hope things start changing quickly for her!

    Michelle


  14. Tracy, thanks for the encouraging post! Those of us who are still pretty new can use all the encouragement we can get! My daughter has been gluten-free for 6 weeks, and although she is gaining weight and is so much healthier (energy, skin, etc.) she is still having some diarrhea (though not near as much). I noticed you said it took 6 months for your son. Did you notice differences slowly, or did it just change around then? I am concerned since she will go a few days, or even almost a week fine, and then get diarrhea again. I want to make sure it is just her body healing, and not hidden gluten!

    Michelle


  15. Paula, I'm glad to hear you have an answer, and I hope all goes well in testing your other daughter. I don't know how long you have been gluten-free, but I noticed my 4 yr old daughter's appetite surge after about 2 weeks. She probably gained 5 pounds in a week! That is completely unheard of for her! She would eat like the people in Survivor when they finally get food!! I hope things are going well for you. Ashlee still has the belly, but I have heard that takes a long time to go away. Since everyone varies, I figure at least a couple months, probably longer, but I don't really know. Ashlee has been gluten-free 6 weeks now, and I am also noticing her skin is softer than it has been in SO long. I never even really noticed it getting dry, it just happened so slowly it seemed normal I guess, and her hair is looking better too. It helps me to find things like that I see improving so that I don't worry so much about things that take longer (like the belly). I haven't noticed any growth in height yet, but I figure she is just catching up in weight first.

    Michelle


  16. Hi, my daughter has a one month follow up check-up scheduled next week, and I know this sounds bad, but I am wondering just what they are looking for. We have insurance, but still are left with a big chunk, so I am trying to determine if it is really necessary, or if we can just do a 6 month check up (where I am assuming they will do blood-work to see if she is really gluten-free) The dr already told me that they won't be doing any blood work at the 1 month, and she is gaining weight VERY well, so I don't really want to take her if he will just look her over, notice how much she has gained and how healthy she seems now and say, "see you in 5 more months!" She is still having diarrhea some (sometimes once a day, sometimes none, occasionally more than once), but I have been speaking with the nurse and she said it is probably just taking her awhile to heal. We are continually looking for hidden gluten, and we still have her off dairy so she had no more suggestions. Anyway, we are on a very limited budget, and we are trying to pay off all the medical bills we accrued to this doctor, and the hospital in testing, so I want to do what is best for her, but don't see the point in acruing more bills if it is not necessary. Any advice? Anyone had a 1-month follow-up, if not, how soon did you have a follow-up? Thanks so much

    Michelle


  17. I agree that you should go with your instincts. With my daughter, we first noticed a growth problem. As a baby, she was always around or above the 50th%, by 2 she was at the 25th and by 4 she had about dropped off. She was gaining, but VERY slowly. It really irritates me when the Drs write that off, the charts are there for a reason, to detect if kids are growing different from their norm, and if she is dropping in the weight percentiles, that is a problem. My daughter then started with the very frequent diarrhea and then lost 3 pounds, which put her back at what she weighed when she was 1-1/2 (only now she is 4-1/2!) Wow, if they won't see her until July and you are limited financially (I TOTALLY understand that one) you might want to just go gluten-free, that is a long time to wait and make your child suffer. It took a couple weeks for us to really notice a difference. She is not 100% yet, but we can see a HUGE difference. She has gained back those 3 pounds, and a couple more to boot! Anyway, don't let a Dr tell you that just because she is not losing weight she can't have Celiac. Good luck I know it's hard!


  18. Robin, I just want to reassure you that you are not over-reacting! When we noticed my daughter wasn't following her growth curve everyone told us how kids grow differently, she was just petite, it was OK. Then when the constant diarrhea started it was just viral...for 4 weeks when no one else in the house had it!!! Well guess what, it was something, I was not over-reacting. We know when there is a problem, and unfortunatly, it is usually just up to us to find the solution. Hang in there and I hope all goes well with your testing and recovery!

    Michelle


  19. Tiffany- Why thanks for the big welcome! We are so excited, only 69 days until we leave! We have family in Henderson, but I have found anyone who doesn't live in the immediate area doesn't know where that is! I would love to live in Henderson, but we just don't know where we will be able to find a rental. Anyway, Longview would be great to find a Dr in. I was told by a relative not to see any doctor in Henderson, so I figured either of those towns would work! My daughter is 4-1/2, and she is more comfortable with women doctors, but my main concern is someone who knows what they are doing and puts some stock in a mother's intuition! And then of course there is the fact that we adopted our son, and he is African American. I want to take both my kids to the same Dr., so someone who is positive about all that would be necessary as well! There was one doctor at our practice who we kept seeing and everytime he saw James he would assume he was a foster child and kept asking if the mom was coming back in the picture. I know for a fact his chart said ADOPTED across the top, so what's the deal? Now that he is getting older (16 months) I would like to avoid that kind of thing! Hmmm, what else can I be picky about!!

    I am so sorry you are having so much problems finding out what is bothering your son! I did remember reading that a Zinc deficiency can lead to loss of taste and appetite. I know when they aren't eating of course they are not getting all the nutrients they need, but maybe a supplement could help. Not that I am saying that this is all that is wrong by any means, but that weight loss would really worry me, and so I am sure you are doing anything you can to keep some weight on. I hope the testing on Monday gives you some answers!

    Michelle


  20. OK, I don't mean to derail this thread, but I had to jump in! We will be moving to Texas in a couple months, and my daughter was just diagnosed last month, so we will need a new GI specialist and a new regular ped. We will be in either Tyler or Longview (or in between!) so Dallas would be too far for a regular ped, but I figure we will either need to go there for the Ped GI, or to Shreveport. I know someone had mentioned East Texas, so I thought I would try! Thanks!

    Michelle


  21. I agree, I think I would do the gluten-free diet at this point. My 4-1/2 yr old has always been pretty picky, but we have found some things she loves. She is eating like a horse now, it is just shocking! We had to take her off dairy for right now, she was having too many GI problems, but we should be able to get her back on it later. That is hardest on her, she loves cheese and yogurt and milk. We have the incredible edible gluten free food for kids by Sheri Sanderson. There are tons of recipes I can try once she can have dairy again, but for now she LOVES the porcupine meatballs. She seems to really crave protein in general, so I also keep deviled eggs on hand (Best Foods Mayo and French's mustard) She also likes the gluten free pretzels and Ortega taco shells (she often eats them like a chip) Fruits and veggies are great, she won't eat veggies really well, so I really like the porcupine meatballs ( they have V8 juice in them). She has regained the 3 pounds she lost in the last couple weeks, and is probably a 1/2 to 1 pound over what she was before she started losing weight. We have had problems with the bread. I think the longer since she has had gluten bread the easier it will be. Once she can have milk in baked goods again we will try some home made breads again. Oh, she also loves the Bob's Red mill pancake mix with Smuckers fruit syrup. (I put a dash of her baby brother's rice cereal in it to add some iron when she isn't looking!) We also have her on Ensure. Watch her vitamins if she takes any (good idea to) Flinstones is what we were using, but they couldn't guartee all ingrediants were gluten-free, so we had to switch. Good luck and let me know if I can help with any more suggestions!

    Michelle


  22. Hi, maybe I can help some, but I am also curious to read the responses you get! My daughter went gluten-free on March 17th, and though we could see some improvement, her appetite was still low for the first couple weeks. Then, just last week her appetite started taking off! She eats more now then she ever has before. She will eat a bit, then 20 minutes later, want to eat again. She basically eats continually throughout the day. My scale isn't perfect, but I think she has gained most of the 3 pounds she lost before being diagnosed. We noticed growth issues with her long before the abdominal problems, but looking back, some abdominal signs were there then too. I don't know how long it will be before she is back to normal growth wise (or really, what her normal growth curve is for that matter!) but I feel much better that she is putting weight back on. We have had her on supplemental drinks, and I think that really helps as well. Hang in there, I know how scary it is when your baby is that skinny, but it will come back on! Just a side note, but if you do a biopsy to confirm the blood test, she will need to be consuming gluten. We did a blood test, but they scheduled the biopsy right away, so we only had to wait a few days after the blood results and then went gluten free the day of the biopsy.

    Take care,

    Michelle