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About stolly

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    Lansdale, PA

  1. Once you verify with a company that a particular product is gluten free, are you ok to assume it remains gluten free unless the ingredients on the label change? Just wondering if a product says "natural flavors" or something ambiguous like that, then you confirm it's gluten free...do you call back periodically to make sure the natural flavors are still gluten free (i.e., they haven't changed what the natural flavors are made of)?

  2. Ok, I just made my first call (just starting DD on gluten-free diet). Call Kelloggs about their Eggo syrup b/c it's what we happen to have right now. The prerecorded message said in general, Kelloggs products with malt is made from barley, therefore has gluten. But then said their syrup is not made with gluten containing ingredients. I don't see malt listed in the ingredients. Does that mean the syrup is gluten free? Thank you!

  3. Our 2.5 yr old daughter had an elevated TTG, but biopsy was not definitive for celiac. She has a complicated case due to arthritis and immune suppressive medications that could skew the biopsy (actually both ways, the medication could have caused villi shortening classic with celiac, but it could have decreased the lymphocyte respponse normally seen with celiac positive biopsies).

    Anyway, the GI doc would like to order genetic markers...he said HLA D2 and HLA D8. He said he'd also like to repeat the celiac panel. Can you please list any labs that you would recommend she have sent? I want to mention them to the doc so my daughter only has to be stuck once.

    Thank you.

  4. Thank you all for your responses and support. We're still waiting to hear back from the the GI doc, but we really don't want to do another biopsy, and don't have a problem challenging his recommendations.

    As for the gluten free diet helping with her poly JRA, that makes sense that it could take a while to help (she is also on methotrexate, which has helped tremendously the past 6 weeks...and I am hoping we can stop it if the gluten free diet makes a difference).

    The other issue if her "failure to thrive," which can be caused by both celiac (if she has it) and JRA. She's 20 pounds at age 2.5, has had weight issues since 15 months old (but appetite decreased before that), and not only has she not gained, but she's lost weight in the last year. Not that I want her to have celiac, but it could help with all of these issues.

    Thanks again!

  5. These cookies are so good! Kind of like a chewy brownie cookie. The sign says they're gluten free, but they are manufactured in a plant with wheat products. They seem fairly healthy for a cookie. I would love to recreate them at home. I'm trying to remember the ingredients...egg whites, cocoa powder, walnuts (or pecans?), and I can't remember what else. Has anyone had these cookies and would like to guess how to make them? Thank you!

  6. Thank you for all of your thoughts.

    Her favorites are Cheerios, Raisin Bran, graham crackers (plain, won't eat cinnamon), goldfish (but she won't eat cheez-its or other shapes, at least not yet), mac n cheese, pizza, waffles, and pancakes.

    Just a note that we often offer her the choice between two things, but she'll want a third thing we didn't offer. I know some of the struggles are due to her age, but I also think some may be due to the gluten diet making her more moody/whiny. I am looking forward to getting her feeling better.

    Thanks again

  7. Just spoke with DD's (2.5) doc. The bx was equivocal...there is damage to the villi, but the changes were not classic celiac disease. He's waiting to hear back from their expert pathologist for his input. With her celiac panel, her TTG was elevated, but she also has rheumatoid arthritis, which can also increase the TTG (however, I am aware that she is at increased risk for other autoimmune disorders since she has arthritis). Anyway, our doc thinks it will likely be called celiac disease, but he isn't sure...he said that damage to the villi can also be caused by a virus (and she did have fevers last week before the biopsy) and some other rare causes. He did say that if the pathologist isn't definitive, one way to be sure is to load her with gluten for a month then repeat the biopsy. I also asked about going gluten free for a month and seeing how she does...certainly that would be good to avoid another biopsy. However, my question/concern is would it be better to have a definitive diagnosis in regard to support from school and the whole 504 plan issue (I don't know much about them yet). Thanks

  8. My 2.5 yr old daughter's biopsy results should be back by tomorrow (but the more I read online, I'm thinking we will try gluten free even if biopsy is negative). Anyway, if definitely positive for celiac disease, I want to get her gluten free as soon as possible. Any suggestions for how to make the switch to a gluten free diet as easy as possible? Did you immediately cut out all gluten out of your child's diet as soon as he/she was diagnosed?

    My daughter eats a very limited selection, and doesn't do well when we try to switch things up. She wants what she wants when she wants it. For example, she's been snacking on some gluten free cereals I bought in the past few days, so she likes them ok, but she wanted Cheerios yesterday. I tried to get her to eat the Gorilla Munch instead, but she just cried and cried. She really wanted Cheerios. This happens often with other food options (when not trying to go gluten free, like we suggest waffles and she wants pancakes) and we usually give her what she wants after she calms down and asks nicely, but now I won't be able to give her some of her old favorites even when she asks nicely. How have any of you handled this? We plan to focus on the naturally gluten free things she can eat (fruit, cheese, etc) that she already likes, but how did you handle cutting out the things they really love?

    I know eventually it will get better once she's feeling better, her appetite will probably increase and she'll be less selective about foods. Just looking for some advice for the initial transition period. Thank you

  9. My 2.5 yr old daughter just had her bx, and I just have a feeling that she has celiac...results back on Tuesday. Anyway, I'm looking for suggestions of a good book to learn about celiac...specifically for my mom who watches my daughter a few days a week. I spend time online, but my mom doesn't go online. I need something that explains the basics of celiac disease, the diet, and the importance of following the diet. She's already said to me..."she can have regular pizza once in a while, right?" She just doesn't understand, and I think it would sink in better if she could read a book about it. Thanks!

  10. My daughter is 2.5, celiac screen was positive and biopsy is next week. I also realize that even if the biopsy is negative, she might still have celiac. My son is 3 months, and while we're obviously not starting him on baby food yet, we probably will be starting cereal/fruits/veggies sometime in the next few months.

    Just wondering...what should I feed my son once we start solids? I know everyone on this board knows so much about celiac, so I thought I'd ask here first, so I also know the right questions to ask our GI doc and nutritionist. Which foods should I avoid for him and for how long?

    I've read a few things about celiac and breastfeeding, that it may help delay the onset of symptoms if you continue to breastfeed while introducing gluten. I am breastfeeding and plan to continue for about a year as I did for my daughter. I'm just wondering if there is benefit in avoiding gluten longer, or if it's best to introduce it while I'm still breastfeeding. Any info you have, or articles/websites you know regarding this would also be helpful.


  11. DD is 2.5 yrs old, celiac panel was positive and endoscopy is later this month. I'm trying to prepare in the event her biopsy is positive. She loves graham crackers, goldfish crackers, Cheerios, and Raisin Bran. Do you know of good substitutes for these? She's eats very little variety, so I'm hoping I can find some good substitutes to ease her into the gluten free diet...and then hopefully she'll be feeling better and will increase the variety. Thank you