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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    I am another pancake/waffle freezer here! I do 3-4 batches at a time. Also, I believe Van's has an Eggo type waffle (we can't do it because of soy but I hear they are good). They have Jone's sausage or ham with it. I like to send them out with a bigger breakfast over cereal because they seem to behave better on a full stomach! lol
  2. StephanieL
    Demeadiated Gliagin protein is the secondary test I insisted upon (at the guidance of Gemini here on the forum who I have thanked a million times over). It is a more expensive test and had to be sent out. My Dr. didn't even know about it but I asked her to look into it and she did and we had it run. She said next time we have to run labs we will have to...
  3. StephanieL
    My DS's levels were as follows: Original- 129 6 months gluten-free- 48 12 months gluten-free- 38 18 months gluten-free- 36 So you can see we are still not at "normal". After ripping through his diet testing products with EZ gluten strips and a bunch of other things at 12 months we thought we found the culprit in his mustard. We were sure...
  4. StephanieL
    I only asked about kids because it happens ALL THE TIME! I would say (and I know this is from personal experience and that of others Mom's I know) most people do not get it! How many times on this place do people say things like "XYZ asked if bread had gluten in it" or "is butter dairy?" Or my favorite "oh it's just a little bit, it won't hurt him...
  5. StephanieL
    IrishHeart, You are not most people. Do you have kids? If not I will tell you, my kids are offered things from adults at least once a week....at least. Even my kid with the Medic Alert is offered things. Sometimes from people who KNOW better (grandparents, Aunts, Uncles, teachers and on and on). You would ask because you get it. MOST PEOPLE DON'T. I...
  6. StephanieL
    They could be/have been overlooked. Also, I would rather pay for the service that comes along with the classic "medic alert" because that information is necessary if someone has my child for a medical emergency. I also don't think a bracelet is going to stop people from offering kids things they shouldn't have and if they did stop to look at the bracelet...
  7. StephanieL
    See...here's the thing with cute ones (and I know to each her/his own), The idea behind them is to alert medical personal of an issue. If they think it's just a "cute bracelet" the may miss the point entirely which would be a shame.
  8. StephanieL
    Unfortunately, this is not true. Many Dr's don't know if meds they are giving/prescribing are gluten-free so I would doubt an EMT is going to know. Also, if it's being give in an ambulance, it is LIVE SAVING and necessary. *Could* it contain gluten? Yes. Is being glutened going to kill someone, not usually (yes, this is where a few people jump in on...
  9. StephanieL
    This is exactly our story. (well almost. DS was pretty much asymptomatic before dx except for a 0 Vit. D level). We were given the option of doing biopsies every year or upon symptoms OR go gluten-free and do blood work in 6 months. After a few months of going over and over we went gluten-free. His tTG was 129. At 6 months gluten-free, 48. ...
  10. StephanieL
    Hi Casey, I am in the Cleveland area. I would love to get together with other Mom's and kids. As it is now, I can't do the drive as I have a wee baby who hates the car. I would be more than happy to have you over thought my kids are a bit older. My kids (5 and 3) are both gluten-free though our home is not. We are also dairy, egg, peanut, tree nut...
  11. StephanieL
    THere is a great site for food allergies called Kids with Food Allergies. They have a section for EoE only! I think you would get a lot of support there! I am sorry you are having to deal with all this. Hang in there! Also, I am not 100% sure but I think the damage from EE and Celiac are two different things.
  12. StephanieL
    You found out about it from someone, yes? If so I would speak to this person. At this late a date, I am not sure they will be able to make other food arrangements but maybe your middle person friend can bring some safe similar food in for you since they know you better?
  13. StephanieL
    I have used these (EZ Gluten) and had a problem at first. After contacting the company they were very very helpful in determining the issue and then it was great. I will say, it takes a bit of time. It says "result in 10 minutes" but in reality the process is a minimum of 20-25minutes. Not an issue if you are at home but incase some people were thinking...
  14. StephanieL
    Some Mom's DO pass gluten through breast milk, some do not. I don't think it is so much the breathing of gluten that is the problem. I think it is more of the "flour dust" settles, gets touched and then into the mouth via eating etc. Esp. with kids who put EVERYTHING in the mouth! But my understanding of ingestion is a bit more liberal than some as we...
  15. StephanieL
    Go-lightly is the most misleading "drug" name EVER! Good luck with that I do not envy you!
  16. StephanieL
    If you are even considering Celiac testing with a scope, you need to get back on gluten NOW. Like, NOW NOW. I am not sure how much 10 days would give you in the healing process but it's said a person needs to be on gluten for at LEAST a few months for the MOST accurate testing. FC just means there is inflammation. I am not sure how much they very...
  17. StephanieL

    ARCHIVED Pediatric Gi In Cleveland

    StephanieL posted a topic in Doctors

    Says it all We are Dr. shopping. Need to get out of CCF for several reasons. Thanks!
  18. StephanieL
    I'm up in the Cleveland area. There is a support group up this way. Open Original Shared Link Maybe we'll meet up sometime! (Sorry so short.. Sleeping baby on one arm )
  19. StephanieL
    I wouldn't try it. I would go for water kefir if I were doing any.
  20. StephanieL
    My DD is 3 and has been gluten-free nearly all her life. With her entering preschool, we are trying to determine if she needs to be gluten-free. She is currently on the same diet as her older brother (he is dx with Celiac) which is gluten as well as egg, dairy, peanut, tree nut and a few other things free. I would like (for easy of school) to trial her...
  21. StephanieL
    Over thinking is our job as parents I am not saying it isn't causing an issue, I was just pointing out that if they were eating it without obvious issues that it's not an allergy as people were speculating is all. Hang in there and I hope you get some answers with the Celiac testing.
  22. StephanieL
    Has you child been eating wheat this whole time? If so and she hasn't been reacting to it through ingestion I would doubt it is an allergy. There could just be something irritating in the formula that her skin reacts to.
  23. StephanieL
    There are some people who can tolerate dairy if it's been heated. Many times when people have IgE allergies and go to the Dr. for a food trial they will start with baked in dairy (a cake for example) and move to "heated" dairy (like on pizza or the like) before moving to straight "on your cereal" dairy. You could react less to things that have been heated...
  24. StephanieL
    I too use Subscribe and Save from Amazon. Also, there is a link that a (all be it small) portion of your purchase can be donated to the Celiac Center in Baltimore for research!
  25. StephanieL
    This post needs to be deleted. The inaccuracies are going to cause issues for people if they don't read the entire thing.
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