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blmoreschi

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About blmoreschi

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  1. We are 2+ years post diagnosis, and I rarely go on this forum anymore because "we've got this". But I wanted to share that I noticed the articles about the non-responsiveness of kids with Celiac to the Hep B vaccine. I mentioned it to our doctor at Children's Hospital of Philadelphia, and he had never heard of it. I sent him links to the article and his response (at age 60+ and as a leading expert on metabolic bone disease) was "wow, I learn something new every day." We had my daughter tested (she is 13) and sure enough she doesn't have the proper antibodies considering she got the full vaccine series (I think you're supposed to be >10 and her number was .7). So, we are about to embark on a new series since she is healthy and growing now and presumably (hopefully) will respond to the vaccine now.

     

    PLEASE DON'T MAKE THIS THREAD ABOUT VACCINATIONS!! This is FYI - if you don't want your child vaccinated then please keep that to yourself! I have no desire to start or participate in a vaccine debate. :)


  2. We went to a Pret A Manger while visiting Chicago over the holidays. I had done my research for my daughter and THOUGHT I knew what to do. But nothing was labeled (unlike I had read it was) so I asked the manager for a list of their gluten free items. He told me that they don't provide it anymore, and have removed all gluten-free labeling from their products. Because we were hungry, and my daughter isn't very sensitive, I had him tell me the 3 or 4 items that "used" to be labeled gluten-free and she chose from those. We did read the ingredients lists on those and they appeared okay. My guess is that they can't control for cross contamination so they are choosing to stop any claims of gluten-free. :(


  3. I guess every kid is different. My daughter was diagnosed in April 2013 at age 11. We immediately went entirely gluten free - our entire household. Her initial TtG was 99 on the scale where <4 is normal. She was retested 6 months later and it was down to 6. We just got results yesterday from a bloodtest this week, and she's <1. (we were doing a blood draw for something else, so the doctor threw in a TtG just for the heck of it - it really wasn't time to re-test). So I guess we're just lucky - but also really careful. We are a completely gluten-free household, I got all new cookware, threw out all wooden spoons, etc. But since her first good result in October we have relaxed a little about eating away from home and she still improved, so we're feeling really good about it.

     

    Hang in there, and I think the downward progress is really what matters. Every person reacts differently.


  4. Prior to diagnosis, one of our best ways to get a somewhat decent breakfast into our daughter was a Carnation Instant Breakfast. In our search to find a replacement for that, I ordered a product from VitaCost.com called Spiru-Tein for kids only (not sure on that spelling). I thought it was a perfectly suitable replacement, but our Miss Particular didn't agree. I don't know if she would have been less particular at age 6, but I think it's worth a try!


  5. Mellow Mushroom pizza! We ate there last summer as we passed through town and loved it. I don't know exactly where it is in relation to where you are staying, but it wasn't far from World of Coke. They have a disclaimer at the bottom of their menu, but do have a separate prep area, etc. We have eaten at another one and have had great luck.


  6. We went gluten-free last April due to my daughter's celiac diagnosis, and I, too, was very confused about the flour blends. It seems that every cookbook I bought or checked out of the library called for something different. My suggestion is to find a book you like and go with that blend to start - either a purchased one they recommend or one you blend yourself.

     

    My first best purchase was 1000 Gluten Free recipes by Carol Fenster. It's my "go to' for all sorts of things, from marinades to funnel cake batter! Everything we tried from there was good.

     

    Then I purchased a bunch of Jules Gluten Free Flour and used that in any recipe, and it was good.

    Then I discovered GlutenFreeOnAShoestring.com and everything I have made from there is WONDERFUL!  She recommends mostly Better Batter flour blend, but provides "copycat" flour mix recipes. She came out with a Bakes Bread cookbook in December that has changed our lives. I made baguettes last night, and they were fabulous!

     

    So....my best advice is to find one cookbook author/blog you like and go with that. It's so confusing otherwise...


  7. My 11 year old lost 5 pounds in a month when she was healthy - not even a cold. And no noticeable change in appetite. That was Dec 2012, and she was diagnosed with Celiac in April 2013. I had 3 different doctors tell me the weight loss was no big deal, and they all had to do some major backtracking when it turned out she had Celiac. She didn't have any GI issues, but has osteoporosis, and certainly weight loss and osteoporosis are two major Celiac factors - but instead I was told to stop worrying so much. And it took a visit to a different doctor/hospital for someone to suggest Celiac.

     

    If I were you, I wouldn't worry too much about a pound or two when your son is ill with something else - my daughter does that all the time. It's the unexplained weight loss that worried me.


  8. Chipotle is our favorite now. We always ask them to get fresh lettuce and cheese bins out for my daughter's burrito bowl, which they do. All locations change their gloves, and we've been to one who changed spoons. I don't insist on the spoon change because I'm not sure it matters. At some restaurants we really have to watch them to make sure they don't hand it down the line to someone with contaminated gloves on.

     

    We're working on getting my 11 year old daughter (dx Celiac 4/2013) to be more proactive about taking care of herself. While we were traveling over the holidays, I suggested she order for herself at Chipotle and follow it herself (because I was ordering food for 4 other people and it gets hard to follow). It was so cute. She stepped right up and said "I have a severe gluten allergy and you need to wash your hands and change your gloves now, please." :)

    We talked later about how asking rather than demanding might be more polite, but I still loved it! :)


  9. I've been reading the advice about dancing on pointe with great interest. My 11 year old celiac daughter with Osteoporosis (-3.4 in her spine, -2.8 in her hip, so pretty severe) is a dancer and all the doctors have said that dancing is the absolute best exercise for her to help build her bone density. She has been gluten-free 9 months now. She does take lots of calcium and vit D supplements because of the bone leeching issue. Her blood calcium levels have always been just fine, and prior to the Celiac Diagnosis, she was spilling all the extra calcium out in her urine (which I was having trouble getting doctors to acknowledge). A new 24 hour urine test after being gluten-free 6 months was much better - the calcium was at a normal level in her urine. Which shows that her body is absorbing it properly now, presumably.

     

    She is about a year away from being tested for pointe shoes. I'm absolutely dreading having to be the mean mom and telling her she has to wait until her bone density improves more, but if that's what we have to do we'll do it. :( She has dreamed of the day she gets her pointe shoes since she was about 5, and is thrilled to finally be in a pre-pointe class this year.


  10. Osteoporosis is also what led to my 11 year old daughter's Celiac diagnosis last April. After 6 months gluten-free, her TtG was down to 6 (previously 99) and we presume that her gut is healing well. I have, belatedly, decided to put her on probiotics, too, based on all my reading. Her bone density did not show any improvement in 6 months. Because she is pre-pubertal and about to go through a huge growth phase, we are having to be more proactive about increasing her bone density and are treating her with IV bisphosphonates (such as Fosamax or Boniva). This was not a decision we made easily, and one we are still somewhat uncomfortable with. So - to all of you others out there - please don't rag on me about that. I'm just trying to share my experience with this new poster.

     

    I have done TONS of reading on this subject (or as much as I can find anyway) and there is very little pediatric experience with bone density recovery after a Celiac Diagnosis. However, from what I can tell you should be able to expect some normalization in yours in the 2 year gluten-free range. There is a lot more information about adult patients. But, we also found some articles (published in Turkey and Italy) that indicate that 20% of Celiac's don't get the bone density recovery just from going gluten-free. They think there is a secondary autoimmune reaction going on, or possibly inflammation. They did find, however, that those patients responded to bisphosphonate therapy.

     

    Good luck to you, and I would suggest all the exercise you can get even though you are worried about fracturing. Our motto is "strong muscles protect weak bones" and we try to avoid contact sports but let our daughter do most everything else she wants to do. Fortunately, she is a dedicated ballerina and that is the best exercise in the world for her to build strong muscles and bones. Maybe you could try yoga?


  11. We were on the road New Year's Eve, traveling from Chicago back to home in Virginia. We were (successfully) outrunning the storm and just went as far as Indianapolis. We decided to get carry-out from PF Chang's and eat in our hotel room so the kids could watch all the Ryan Seacrest shows. I ordered online from my phone and we ordered all gluten-free items. It was all wonderful (except for one beef dish) and we loved the big orange "gluten-free" stickers on everything and especially the little packets of gluten-free soy sauce. Reading your story I'm glad we ordered all gluten-free (only my daughter with celiac is gluten-free outside of the house) so we didn't have to worry about any mix-ups.

     

    So sorry about your bad experience, but in general PF Changs ROCKS! Just wish we lived near one!


  12. I just want to share my enthusiasm about a new book called Gluten Free On A Shoestring Bakes Bread. The recipes are wonderful and the dough is like REAL dough!! It was so thrilling to me to have company for dinner today and share bread that no one would ever know was gluten-free (except, of course, I have to open my big mouth because I'm so proud of my loaf!!).

     

    I had to invest in some "different" ingredients to start making recipes from this book, like Whey Protein Isolate and Expandex Modified Tapioca Starch. But it's worth it. I'm not sure "on a shoestring" is an apt description for the bread - but to have the taste and texture of real bread is a treat for us all since our house is gluten-free in support of our 11 year old Celiac daughter.

     

    I also like all of the other recipes shared by the author, Nicole Hunn, on her blog - Gluten Free on a Shoestring. I made her peanut blossom cookies and my dad said they were the best he's ever had.

     

    If you like to bake or just want to eat delicious bread again, I highly recommend this book. The author has been very available on her blog and on Facebook to answer questions.

     

    Happy Baking!


  13. Whine away! I'm with you. We're 9 months into our gluten-free life, and it is "mostly" easy now. But sometimes I get really sad thinking that my Celiac daughter (age 11) will have to cope with this for the rest of her life. I know, it's not leukemia, it's not something terminal......but it still sucks. This is the right place to whine - no one else will want to hear it!


  14. I'm not sure how old your daughter is, but that can certainly make a difference in your tactics! My 11 year old, who was losing weight before her diagnosis, has been steadily gaining ever since. She is very active physically (she's a dancer) and I really notice that makes a difference in her appetite. She still doesn't eat much on those rare days we're at home and she's not very active.


  15. Wow, our 11 year old daughters sound very similar with their bone age delay! I definitely would encourage you to ask for a DEXA scan to check her bone density. We have been convinced by multiple doctors that it is very important to address her low bone density before she starts that big pre-pubertal growth spurt. I am also not at all upset by the delay in puberty (I have a 14-next-week daughter, too), and actually my daughter isn't either. She sees what her sister has dealt with and isn't in any hurry, plus she's a ballerina so likes being small and thin. Her doctors also say that she should be able to make up the delay in growth, and if she does what they predict, she has about 12 or 13 inches to grow in the next few years. Her bone density is extremely low, so we really worry about her spine as she grows that fast.

     

    Where do you live? We're in the Shenandoah Valley of Virginia. I know my daughter would love to have a gluten-free friend with similar issues!


  16. My daughter was diagnosed at age 11 last April. I think it is kind of a hard age, because they know what they're missing (as opposed to being a toddler or baby). And it's also an increasingly social age, so that is a challenge, too.

     

    I found the clear it all out at once and go gluten-free right away approach to work best for us. We kept some gluteny cereal for my older daughter (and still keep some), and I keep some gluteny rolls in the freezer that I use to make her lunches, but other than that we are 100% gluten-free. And you should see the precautions I take when I take one of those rolls out to thaw and make a sandwich! :)

     

    My non-gluten-free daughter will be 14 in a few weeks, and she has actually surprised me how well she has adapted to our gluten-free life. I do periodically take her for treats (favorite sandwich place, etc) when her sister is otherwise occupied. But I think mainly I dove right into baking and we have had lots of yummy gluten-free treats (and probably why my husband and I have gained weight!). She saw that she wasn't going to be deprived. She did have one huge meltdown about it about 5 months in, but I think that was just general 13 year old girl stuff and the diet (and the special attention paid to her sister) just got the focus.

     

    My Celiac daughter also didn't have any GI symptoms, although since going gluten-free we realize that she used to poop more frequently (2 times per day) and it was soft. She was also small, but not as small as your daughter. I think she was about 72 pounds and 4' 6" when she was diagnosed a month after her 11th birthday. Her big symptom is osteoporosis. Has your daughter had any fractures? You may want to ask the endocrinologist about getting a DEXA bone density scan done. My daughter had fractured her arms 6 times starting at age 3 and has a 2-1/2 year bone age delay - which also means a puberty delay. I wouldn't be surprised if your daughter has a bone age delay also. But I think you'll notice that she'll start growing and gaining weight soon after going gluten-free. At the six month mark, my daughter had grown 1-1/2 inches and gained 7 pounds! We were thrilled by that.

     

    I know it is completely overwhelming, and for me it was all consuming, too. Now, at less than 8 months in, I feel like pretty much of a pro at this (until the next time I mess up) and I don't think my daughter has gotten glutened at all. Knock on wood, cross fingers and toes, etc. Her blood tests numbers were very low at the 6 month mark, so I'll pat myself on the back and say we're doing a good job. One book I really recommend is Real Life with Celiac Disease, and also Celiac Disease: The First Year by Jules Shepherd. And, as my husband is always reminding me, our GI doc always says "don't let the perfect get in the way of the good."  Good luck!


  17. I can't remember how many kids attended - maybe 75? I know they have room for more than they had. My daughter says that they were spread from ages 6 and 7 up to high school. There were multiple groups in the 10-11-12 age group but the rest were pretty evenly dispersed.

     

    They did lots of different activities. Off the top of my head, there was a climbing wall, paddle boarding, paddle boating, and bowling. They also have a one day "color war" where the camp is divided into two colors and they do activities/contests all day. She really had fun that day. The closing ceremony/presentation including a lot of singing and chanting.  She came home exhausted, and after an hour sleeping in the car woke up sobbing because she didn't want camp to be over. When I say it's not a real camp experience, I think it's because they aren't living in cabins in the woods.....they are more in dorm like settings with 6 or 8 kids and a counselor in each room.

     

    We definitely feel it was worth our 10 hour drive. As a new Celiac at age 11, my daughter tends to really worry when she's eating away from home. I think to not worry at all for a week was the biggest blessing she could have. And she can't wait to go back next year!

     

    I could e-mail you the slide show that they did at the closing ceremony and then e-mailed all of us if you are interested. If so, please send me a private message with your e-mail address and I'll send it to you.


  18. I think I can give you some good perspective on this! My 11 year old was diagnosed in mid-April - about 2 weeks after we signed her up to go to the same church camp she had been to the two previous years, and this time her best friend was going with her. All of her tears when she was first diagnosed were about camp and whether she could still go. I called the camp and they said that I could send food for her. Then I started searching for a gluten-free camp because we were trying really hard to get her over the initial hump of diagnosis. We found Camp Weekaneatit, and registered her for that as well.

     

    Her church camp was less than successful. She basically starved all week, and what she did eat that was supposedly gluten-free gave her some stomach issues (and she has always been GI-issue free). We took a lot of food for her, but she didn't want to appear different and basically subsisted on salad. Needless to say, until she can advocate better for herself she is not going back there. BUT....she is okay with that because she LOVED Camp Weekaneatit! Yes, it's a little bit of a different camp experience and not as rustic and "woodsy" as her other camp, and my vision of camp. But it's got a lot going for it and she constantly talks about things they did there. She did everything from climbing walls to paddle boards to bowling. And it was a great experience for her as a newly diagnosed Celiac. She will be going again next summer, and the 10 hour drive from Virginia is definitely worth it!


  19. I read somewhere to use frozen waffles, and we had one brand that my Celiac daughter didn't like at all that had just been taking up space in the freezer. So last week I put them in my mini food processor and voila! breadcrumbs. They were perfect and not sweet at all.  Other than that, I do like others. I save the heels from Udi's or Canyon Bakehouse breads (our preferred) and use those for breadcrumbs or homemade croutons. And I've used gluten-free quick oats in meatloaf in place of bread crumbs, too. I can't imagine buying one of those bags of gluten-free breadcrumbs - very pricey!


  20. This is correct.  It isn't quite as simple as Middle School genetics but the basic idea stands. Genes are "double".  When an egg is made, it splits.  Each egg/eventual child gets 1 split half from the mom and one from the dad.  If you have the "gene" on only 1 half, it is possible the child won't get that half.  Therefore, she might have gotten it from Dad.

     

    If you have 2 copies of it - then the child would get one.  But...Celiac genes aren't as simple.  There are alpha and beta alleles.....it gets really technical.  I would just get dad tested and know where everyone stands.

    Thanks - that's the simplified answer I was looking for! :)


  21. Have you one or two copies of DQ2?  It is possible to have 2 copies.  If you only have one copy, I don't think one could be sure which the child received.  Will the company that did the test help you by answering this question?  My understanding of genetics (which is very little) leads me to believe they can tell which genes the child has come from mother and father.

    Thanks for that info. I'll check into it further!