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Hi, my name is Michelle, and my 4-1/2 yr old was just diagnosed with Celiacs with a biopsy done on the 17th. She has been gluten free (well, I know of one mistake so far) for 9 days now and I really thought she would be feeling better than she is. The Ped GI said that the test was very clear, but didn't say if that meant her intestines were badly damaged, just that sometimes the test is hard to know for sure, but for her it was clear. I am wondering if she was more advanced and it is taking longer for her to feel better, or if she is getting gluten somewhere after all. I tried to keep her off dairy, but she won't eat anything, so we are using those Lact aid chewables. I am wondering if the straight milk is just too much, even with those, so I will cut that out. She had gone a day and a half or so with no diarrhea, and then she had some overnight and a couple times this morning already. There is an improvment, I just thought it would be quicker. She is so thin, I just want her to be able to start gaining some weight back! She barely ate anything yesterday. Before she got sick we were really good about her eating what was served, or waiting until the next meal, but now I am so anxious for her to eat, I think she is getting used to being catered to. It is hard to know the best course to getting her to eat better. She is drinking about a can of Pediasure each day, so that makes me feel a bit better, but shouldn't she be wanting to eat more by now?

Thanks,

Michelle

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Hi

I hope this helps a little, my daughter who will be 6 years old in June was diagnosed with Celiac about 2 months ago. Ronni's villi is totally flat. I have had her on the gluten-free diet since her diagnosis she really doesn't care for the gluten-free foods and I too was concerned because she hasn't been eating much but to my surprise I weighed her two weeks ago and she gained 3lbs, so what she is eating is staying with her. Just stick with the diet I have seen such a change in my daughter she now weighs 38lbs and looks so healty no more black circles around her eyes. The tears I cry now are tears of JOY!!!!!!!!!

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I think the recovery period varies from child to child. Our peds GI said it would be 2 weeks before we noticed a difference; friends with celiac disease said it would be more like 5. One can of Pediasure is not very much, but some kids just don't like the way it tastes. I would try for 2 or 3. (My son, at his worst, was completely dependent on elemental formula and drank 9 cans a day -- he weighed 48 pounds and is 10 years old) Could you make a shake with Pediasure and some Breyer's lactose-free ice cream? gluten-free Bacon (like Oscar Meyer) is calorie-dense and lots of kids like that, too. I don't think it's possible for her to be "catered to", I mean, she's sick and needs some accomodating! Another thing is to try tiny dishes -- sometimes it's daunting for children to see a whole plateful when they've been so sick. Or just leave tiny dishes out where she can get them, buffet-style. Try rice with olive oil. Try watered-down purple grape juice! Try not to hover :) (ISn't that impossible? I remember being so excited when he would eat an entire bite of ANYTHING) Get your pediatrician to refer you to a dietician for help....

Has she been RAST allergy tested for other food allergies? They are pretty common with celiac disease. Try not to panic, but keep an eye on the weight, it _does_ matter, no matter how calm doctors are!

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Thanks for the encouragement! She was 26.4 lbs when she had her biopsy done, which was down 3 lbs from her "normal weight", which I know now was so low because of celiac disease. She is starting to drink the Pediasure better, so I am trying to up her a bit. The nurse said for her to get everything she needs from it she would need 3-4 cans. She has not been alergy tested for anything else, but the nurse also told me that even if she takes a Lact-aid, the lactose could still be causing the problem, so I guess that will be our next step. She did seem to want to eat more yesterday, snacky stuff, but I will take food of any form right now! I think I have given up on finding a bread she likes for right now. She seems happy eating pretzels and taco shells and the occasional cereal, so I am going to see once she get her appetite back. I am just worried that I am still contaminating something and that is why she is not getting better sooner, but it is encourging to hear that it does seem to take this long. Her Ped GI wouldn't give us a time frame, just that some kids are quicker then others. I guess I am just used to quick fixes, this is definately not one of them!!

Michelle

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It's hard to not worry about contamination. I put his most-commonly used foods into plastic bins so I just didn't need to worry anymore! I would let her eat absolutely anything she'll like at this point, and then gradually move to what will become your normal meals. It just takes so long to re-adjust, so be patient with yourself. We've been at this only since December and are still working out the kinks. Keeping it simple to start makes it easier, so do whatever is simple, and hang in there.

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Hi Michelle,

My kids don't seem to miss bread all that much. But they can't seem to live without cereal, chips and crackers. The crackers were the hardest to find a suitable substitute for. We still haven't found one, but they love the Glutino pretzels. They taste more like a saltine cracker, but are shaped and salty like a pretzel. I have had to start ordering them by the 6 pack of family size bags!! I assume the pretzels your daughter is eating are gluten-free. I have a daughter that is going to be 5 in a few weeks and she is small at 34lbs. I imagine how concerned you must be for your daughter, but you need to be patient. She will heal, but sometimes the process is slower than we would like. Just think about how long it took her to get as sick as she was and then figure it will take a while to heal the damage. I highly recommend cutting out the dairy at least for a few months. She will heal faster. The tips of the villi is where the enzyme lactase is located,a nd even with substituting Lac-taid in her diet her body will still be put under stress trying to digest the lactose. If you cut the dairy (I know it is hard, you just want her to eat anyhting at this point) she will be able to spend more energy on healing instead of digesting.

The foods my kids eat the most of are:

-brown rice (they texture is more firm than white and is tastier) with gluten-free Tamari

-rice cakes (plain and apple cinnamon)

-Glutino pretzels

-Lays potato chips

-Fritos corn chips

-corn tortilla chips & tostada shells

-chicken (baked, fried, grilled)

-Turkey slices

-home-made Turkey jerky

-fruits (fresh and canned) mostly apples, peaches, pears, strawberries, blackberries, mixed fruit, pineapple, plums, etc.

-veggies (fresh and canned) mostly corn, carrots (raw), broccoli, celery sticks and my daughter eats fresh salad and most other veggies that my sons won't touch!

-tuna

-peanut butter

-almond butter

-sunflower seed butter

-peanuts

-raisins

-almonds

-fruit snacks and fruit roll-ups

-Van's gluten-free waffles

-gluten-free cereals (Envirokids Amazon frosted flakes and Gorilla Munch, Nature's Path Organic Crispy Rice & Organic Corn Flakes, Pacific Grain Nutty Rice, Malt-o-Meal Cocoa-Dino Bites and Fruity-Dino Bites)

-gluten-free cookies and other treats that I make for them.

My kids tend to be snackers, so this accounts for so many finger foods and such snack type foods. The hard part is still getting my daughter to eat. They have all been gluten free and dairy free now for about 2 weeks (myself for three months) and we have all been trying different gluten-free foods for over a year while testing, so we knew what we like and what we don't for many foods. But since going gluten-free my daughter does not want to eat very much anymore. I have tried getting her to help with the shopping and cooking to get her interested, but so far it doesn't work. She just wants to eat the junk foods and not the healthier choices. I do let them eat some sweets (from the list above and some gluten-free/cf candy choices) but I limit their daily intake of sugar. This bothers my daughter and she will throw big fits. We also got contaminated last week at a family party and it has been much worse since then. Lots of crying going on in my house from all 4 of us!! My husband (who is the only non-gluten-free family member) doesn't know what to think, but I think he is starting to realise what gluten does to us all!

Sorry for going on so long. I wanted to let you know that you are not alone in your struggles. God bless,

Mariann :)

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