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e&j0304

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About e&j0304

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  1. I have tried to read as much on here as I can find about Disney and it seems like they do a great job with gluten free foods. This is our very first trip to Disney World and we have 2 children (ages 2 and 4) who follow a gluten free diet. We are going in September.

    Should I request a gluten-free foods list to be mailed to my house?

    Should I make special requests over the phone or is it ok to just ask when we get there?

    What about Character dinners....I don't want my kids to feel left out.

    We are doing dinner at Cinderella's Castle, Chef Mickey's Breakfast buffet (twice), a Princess Dinner at Epcot and maybe one other Character dinner although I haven't booked it yet. How many character dinners are too many, do you think? We will be doing the Disney parks for 5 days.

    We are going to have a fidge in our hotel room. Can I buy things there to keep in our room since we're flying? I am the most worried about breakfast because they LOVE their gluten-free cereal, bars, waffles, etc. that I'm sure they won't be getting at WDW.

    Thanks for any insight that anyone has. I'm glad we've started planning this trip now. It's overwhelming for someone who's new at this!

    Shannon


  2. Thank you all for the advice. Her dr. called today and said that they want to test her again in another 3 months. They will do antibody testing at that time to determine if she has Hashi's. Hopefully we will find out one way or another if there is something really wrong with her.

    I really appreciate the advice and support!


  3. Thanks for the advice, Georgie. She has not been tested for anything other than TSH and Free T4. She was tested about 2 or so years ago for FISH levels? I'm not sure what that is but they said it was normal.

    It's frustrating because I think drs. think we're crazy. I know that it's not normal that my 4 year old's hair was falling out in clumps and is not not growing at all. We have pictures of her at the age of 2 and her hair is almost EXACTLY the same length. It has grown maybe 1/4 in. in 2 years with NO haircuts. That can't be normal. She also struggles terribly with constipation and they just want me to give her a laxative...

    Anyway, thanks for your help. I hope we can get it figured out!


  4. Ok, so here's the deal. My little girl was tested 3 months ago for suspected hypothyroidism. Her labs were: TSH 3.7 and Free T4 0.6. The dr. wanted to wait and retest her so we just did that and her new tests results are: TSH 2.62 and Free T4 1.2. So last time her results were borderline abnormal. Her TSH should really be under 3 for sure and we would like to see it below 2.5. Her Free T4 was obviously low at 0.6 but is now completely normal.

    What do you make of that? She is on no meds. Her symptoms include hair loss/thinning/no growth, short stature, protruding abdomen, aching legs, cold skin, mottled-looking skin (red/purplish lacy pattern on her skin). Apparently this is all normal and ok...

    She is currently in the 5% for height and 60% for weight. She is so short compared to other kids her age. I am 5'9 inches tall and my husband is 6'4. Our son is above average in height. We were all above average in height as children.

    What would you do with these new results? Should we just let it ride for another year and see how she does? I already feel like a crazy parent because she didn't want to run these tests in the first place and I think she was shocked that they came back borderline high last time.


  5. If he has reflux that could be making him wake up at night as well. Some kids have reflux without us really knowing it. It's called "silent reflux." My son has a pretty severe case of this and also wakes up many times during the night crying. Food issues as far as texture and refusal to eat are also signs of reflux.

    I'm glad you got in with the GI. He should be able to figure it out. I say that a little hesitantly because we've had our fair share of TERRIBLE Gi's but we cannot possibly be the norm and I'm sure yours will be fine.

    Good luck to you!


  6. JUst out of curiosity, why doesn't anybody think that a trial of the gluten-free diet might be a better indicator and safer course than an endoscopy? There ARE risks to the endoscopy because of the anesthesia, and there are false negatives. What if the endo results are negative? Does that mean you wouldn't try the diet? What will an endoscopy do that a diet trial won't?

    Seems to me the diet is the first place to start...

    I think that the benefits to finding out the information during an endoscopy FAR outweigh any potential risks. Most people do completely fine with the anesthesia and if you have a good dr. they should be able to find the damage. If that is all negative then I would absoloutely do a trial of the diet. I agree with Ursula that it only makes sense to try to get the diagnosis first and then try the diet so the parent and child aren't left with the "Well maybe we should have done it...." thoughts. It is not at all easy to put a sick child back on gluten just for a challenge. Also, there are other conditions other than celiac that could be affecting that child. He deserves to have every possible chance of receiving a diagnosis if it's something he will have to deal with for the rest of his life...

    JMHO


  7. The Kinikinick (sp?) mixes are AWESOME. I always use those for cakes and cupcakes. Also, like someone else mentioned, some bakeries do make gluten-free cakes. Our local chain, Hy-Vee, does gluten free cakes. If it's just a small party I would definitley try to do it ourself though if you can. It would be less expensive that way. I actually make a Thomas the Train cake for my son's second birthday out of gluten-free cake mix and it was so adorable.

    Good luck!

    Shannon

    PS We also only make one cake but our parties are pretty small. If you're having a huge party I don't see a problem with making a gluten-free cake maybe for all of the kids and then a regular one for adults or something because the gluten-free cake mixes are expensive.


  8. It sounds like your son could definitley have celiac disease or a gluten intolerance. I realize that the cost of blood work or other tests can be a consideration but if your insurance covers it or if you have the money to spend I highly recommend going that route. If the tests are negative you can always try the diet. However, if you try the diet first and then change your mind about testing it will be VERY difficult to get an accurate test. As a mother I know that I just wanted to do everything I could to get a diagnosis for my children. I felt as though they deserved to know exactly what condition they have. It's a personal choice and I completely understand that not everyone agrees with my decision. The tests are not bad at all. It is a simple blood draw to begin with and although your child will scream he will be fine when it's over. Both of my kids have had to have them many times and although never pleasant they get over it. We started having them when my dauther was only 14 months old so I understand where you're at. The endoscopy is was really easy. My son tolerated it without issue and I really haven't heard any bad stories about the procedure.

    Good luck with whatever you decide. I hope your son is feeling better soon.

    Shannon


  9. It sounds like she could have it but you won't know until you get her tests back. That short amount of time off of gluten will not change her results. The test results can be unreliable in little kids however and I hope she at least got the complete panel run.

    Good luck. She may be gluten intolerant without celiac so if the diet helps her, don't discount that. You also know that if her tests come back positive, or even it they're negative, they may want to do an endoscopy with biopsy to confirm the diagnosis. She needs to be eating gluten for that so you may want to keep her on a normal diet for now.

    Shannon


  10. It is not only those who are sick who test positive with Enterolab. The fact is that most people test positive....whether or not they have symptoms.

    And then there's my son who does have symptoms who tested negative in all areas through enterolab. Go figure. I really don't trust that they accurately diagnose people with gluten sensitivity. I also have a friend who's child tested neg. for tTG through enterolab and tested positive months later in his blood after being gluten-free!! So there goes their theory that the diagnose people in the early stages.

    I urge people to just save their money and try the diet if that's what they're going to do anyway.


  11. I think that you should remain on a regular diet until your appointment with the specialist in April. Try to eat gluten every day. That is the best way to get the most accurate testing. Hopefully they will just do a biopsy at that point. Conditions other than celiac can cause your high scores from enterolab. Hopefully Rachel will see this post and respond.

    You are obviously having issues with the absorption of your food but that doesn't mean you definitely have celiac disease. If it's important for you to know for sure, like you stated, then I suggest that you keep eating gluten and see that specialist.

    Good luck to you and I hope you get your answers!!


  12. Well I think you have very good reason to suspect celiac. His tests at the moment do not indicate celiac, but that is not to say that he is not gluten intolerant and could develop celiac in the future.

    The problem as far as getting him to stick to the diet is likely that a teenage boy won't care whether he may or may not develop something in the future :(

    I am sorry that he has so many health problems. I URGE you to find a dr. who will listen and try to get to the bottom of this for him. He has so many issues going on and although he may have a gluten intolerance, there is just as great a chance that he has other issues as well. I think it's easy to blame everything on gluten, but sometimes it something else.

    Good luck to you!!


  13. Is he the one that had only his IgG elevated? I think it was you that posted on a different board. If that is the case I think the best thing that you can do for your son is to see a dr. who knows exactly what the test results for your son mean. His elevated IgG alone really does not indicate celiac disease. This is not to say that he isn't gluten intolerant but it is going to VERY hard to convince a teenage boy that he needs to be on this diet without an actual diagnosis. Quite honestly, I don't blame him.

    I don't know what to tell you. I don't remember what his symptoms are or what lead you to think he had celiac but I think he will have a hard time being on a diet that someone just thinks he should be on without a medical diagnosis or reason.

    Just my two cents. Feel free to blast me now...


  14. Thanks. I will keep a close eye on him tomorrow and see how he does. I gave him a dose mixed in apple juice 1/2 hour before dinner and he refluxed the entire time he was drinking it. He spits up in his mouth and swallows it back down...

    Then he kept refluxing after dinner as well. I'm not sure what to think. I hope this works. I want to avoid any other invasive medical testing on him because he's already been through a lot and he's only 2. He's already been put under 3 times in his little life!!


  15. Thanks for all the info. I went back and talked with the pharmacist today and he said that many children do very well on this drug and some don't. We won't know until we try. We did give it to my son today and he seems ok so far. He spit his last dose out all over the floor tonight though so I guess he didn't get much. I forgot to ask the pharmacist if I have to mix it in a liquid first or if I can give it straight from the dropper. Anyone know?

    I pray that this works out for him. We didn't notice any change in his reflux today but of course it will take more than one day!

    Thanks again


  16. Thanks so much for your replies. We are going to just go ahead and give it to him and keep a close eye on him. The side effect that I've heard about for kids are Parkinson's like tremors/seizures as well as diarrhea, insomnia and irritability. I got on a forum for parents of kids with reflux and found that quite a few of them had had bad experiences with reglan so I thought I would ask some more. I guess there's always a chance but hopefully he'll do just fine.

    Thanks again!


  17. e&j---your doc is misguided, as you thought.

    From Dr. Green's website: http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

    "Several studies have demonstrated that reliance on either anti-tTG or endomysial antibody as a single test will underestimate the prevalence of celiac disease " (there is a reference page for studies to support that sentence, in case you are interested)

    I am actually VERY interested in any further information you can provide. My husband was willing to have the blood test done after seeing his fathers results. However, now that this ped. GI basically laughed us off about it he no longer feels the need to get tested. My father-in-law had the whole celiac panel run and his antigliadin IgA was elevated. It was 66.7 and it should have been below 25. I am wondering why they even run the test if it isn't indicative of anything?? Of course this guy told me that he doesn't even run those tests because they, "Don't tell him anything." His total IgA serum was also elevated but I realize that that doesn't mean anything. His IgG was normal as was his tTG.

    Thanks for any further insight. I had been researching this prior to that GI appointment but kind of stopped after going. This GI said he thinks my 2-year-old son has Rumination Disorder after we went to see him about his reflux. That diagnosis has been weighing heavily on my mind ever since and I forgot about the celiac stuff.

    Thanks again,

    Shannon