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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    Open Original Shared Link Here it is. He is currently doing a larger study. We tried to get into it but becaus elf DS's atypical issues we were not able. Hope this helps!
  2. StephanieL
    So what are your thoughts all? My DS is 5.5 and has food allergies and Celiac. Because of safety (crumbs plus his anaphylactic reaction possibility) his 3.5 yo sister is on the same diet here at home. My 9 month old will be gluten-free till at least a year but most likely longer for the same reasons my daughter is. She started preschool last spring...
  3. StephanieL
    Is she allergic to anything? Nuts are a common issue in gluten-free facilities. Hope she's feeling better.
  4. StephanieL
    Not the OP but *usually* an allergist will suggest staying away from all tree nuts because there is a high possibility of cross contamination unless you find nuts from a place that only processes on kind of nut.
  5. StephanieL
    I don't agree with bringing in a meal. I wouldn't want someone bringing in a smelly sandwich or something and ruining the dining experience for others. I choose to inform them that we'll "make an appearance but don't order a meal for us" before hand. It is VERY expensive for these things! We eat before at home or the hotel or a safe restaurant before and...
  6. StephanieL
    Rice/ corn chex Pancakes Sausage Fruit chicken tenders Coconut yogurt Crackers Tuna Sun butter Tortilla chips Carrots Potato chips Enjoy life foods (cookies, granola, plentils, chocolate) Cupcakes Hemp milk Rice cereal That's just a rundown of what my kids eat pretty regularly. What kinds of foods do you and your son like to eat?...
  7. StephanieL
    I asked Dr Fassano about this. He said unless there are actually signs of an issue that the benefits of breast feeding outweigh what gluten gets through.
  8. StephanieL
    Who makes the food in the house. Who buys and prepares it. You do. If you cook/bake gluten-free he isn't going to be getting it elsewhere unless he's "cheating". Soon enough he'll begin to see that it is the gluten and when he's ready he'll stop (hopefully). 7 is pretty young to get it though so it isn't surprising that he isn't connecting things...
  9. StephanieL
    Oh I hear you! My DS has life threatening food allergies including peanuts/tree nuts. One of the biggest worries is store bakery things cause they use nuts everywhere and most/all allergists tell PN allergic folks to stay far away! When I was at DS's school I asked the teacher if I could make cupcakes for graduation and what other kids allergies were so...
  10. StephanieL
    When my DS was knowingly glutened he was having bloodwork a few weeks later. I called the Dr. and she was not overly concerned by one know glutening. HTH
  11. StephanieL
    When we had the same thing (high ttg, no visible damage on biopsy) our Dr called Dr. Fassano. Our options were to go gluten-free and see what his ttg did (started at 120+) OR rescope yearly. That was not going to happen. After a few months we decided for e gluten-free diet for him. After issues with thyroid and cc issue with a product (he was completely...
  12. StephanieL
    As to this question, I don't think anything can cause normal blood work except a lack of a problem. As for everything else, is your child following his curve? Cause that is more important than any chart. The growth charts they use are old, outdate and based on formula fed kids. Maybe get a hole of the WHO growth charts and see where your child falls on...
  13. StephanieL
    My son has had milk once in his life. He has an anaphylactic allergy to it so that is a good theory (and I know so much gluten and dairy issues go hand in hand) but that's not the case with him.
  14. StephanieL
    Yes, I knot the reference range was under 20 but I have always heard numbers below that from people and was hoping I would as well. Again, it's within normal limits so I guess I shouldn't concern myself with it
  15. StephanieL
    I am so excited! After 2 years gluten free, DS's ttg's are FINALLY NORMAL!!!! We have been strict and cold not figure out why there were still not WNL. I started poking around here and got some great leads and after demanding more testing and new Dr's we figured out DS also had hypothyroidism. This was in Jan/Feb of this year. So here we are in July...
  16. StephanieL
    An allergist isn't going to look for intolerances. They look for IgE allergies, those which are likely to cause an anaphylactic reaction. A positive blood or skin prick test is 50/50 on accuracy. A negative is better than 90% accurate. So given those odds on the western medical testing, I don't think so much of other alternative testing. A food log is...
  17. StephanieL
    Okay! I just worry when people start "testing" without talking to the allergist first! Also, I would think it a coincidence with what happened. Those aren't signs of an IgE allergy. PS Sorry about the other post. I have 3 kiddos running around and must have missed the part about the Dr's advice!
  18. StephanieL
    Are you doing these trials with an allergist? If not, it is very dangerous and potentially deadly to do so.
  19. StephanieL
    After 3 months gluten-free and not seeing a lot in the way of results, we put DS on a probiotic. Within 3 days he was having normal BM's for the first time in 4 years. There may be something else going on but 6 weeks isn't a ton of time either.
  20. StephanieL
    I haven't heard that at the ones I have been to nor from any of our Dr's. Interesting. I still think the best plan of action would be to continue on gluten till you at least talk to the Dr's office. They can advise you one way or the other.
  21. StephanieL
    I don't know what your experience is with Celiac in children but most if not all Dr's will insist on an endoscopy for children unless there is a family link as well as the genetics. I do know Dr. Fassano has changed the "golden standard" BUT that research hasn't gotten out to all the Dr's yet. IF the Dr. isn't in the know about these changes, they will...
  22. StephanieL
    Most schools would prefer you NOT have a 504 because it involves paperwork and added meetings. I as a parent would not NOT have on no matter how well the school was dealing with things. A 504 plan is a document that ensures my DS's allergies and Celiac are handled in a way that everyone knows about and we are all on the same page. It also give me legal...
  23. StephanieL
    Actually a negative test result for true IgE allergies is about 90+% accurate. A positive (meaning yes, they have an allergy according to the test) is only 50% accurate.
  24. StephanieL
    I know! My DS was completely asymptomatic. Biopsy was inconclusive. Only off blood work. After a few months of thinking about it DS went gluten-free. tTG's came down from 120 to 48 in 6 months. That was enough of this Dr's (he also had + genetics on both genes). I still question his dx so I totally get what you are feeling. Why isn't it just...
  25. StephanieL
    You are kidding me, right? Why are you yelling at me about why some people feel the need to have a formal dx? What you do with your kid is your business, I was just answering your question as to why some people need/want a formal dx. Your comment doesn't even make sense, yes if you have Celiac why would you eat gluten but the OP said there isn't a formal...
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