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wmramsel

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by wmramsel

  1. wmramsel
    My daughter is 4.5yo and has had celiac disease since birth. We have been gluten free since she was 2. Her typical symptoms of being glutened were primarily and initially a skin rash. The rash, which is very specific and easy to spot, was always the symptom we saw when she got glutened due to cross contamination as well. Anything more than CC and she...
  2. wmramsel
    Hi! My daughter has Celiac and was born with it active. She is 4.5yo now. Before diagnosis and going gluten free, her poops were always constipated hard, she had trouble passing gas as an infant. After going gluten free, her poop is normal and regular. When she gets glutened, and when we have had to do gluten trials, she bounces between diarrhea and...
  3. wmramsel
    DON"T APOLOGIZE!! Seriously, this is all so stressful and confusing. I worked on it an hour or so a day. We are probably going gluten free as a household when we get back from vacation. It doesn't help that my MIL thinks she is "helping" when she buys junk food that says gluten-free on it. I wouldn't let her eat this crap anyway!!! Ugh.
  4. wmramsel
    We did the scope and biopsy and blood work. The GI said that he did not see any damage to her villi, but he qualified that by saying he wasn't surprised because she is so young and has been off of gluten most of her life. He said it will be the blood work and biopsy that really show if she is Celiac. He said he thinks she definitely had a gluten problem...
  5. wmramsel
    ......on to the scope tomorrow! I'm not sure to be happy that the biopsy was negative for DH and hold out hope she doesn't have Celiac, or be upset we still have to go through with the scope....or both..... Any advice on how to make the procedure and 'recovery' easier on her? She is 2 1/2...
  6. wmramsel
    BTDT? I am trying to remember that they have been good about listening to me and then trying to find out the best way to do things. The comments people make get under my skin right now. I KNOW that I'm being sensitive to it, which is why I come over here and post it where people will understand what we are trying to do, and why the comments agitate...
  7. wmramsel
    AAAAARRRRRRGGGHHHH!! *Sigh* I had to get that out. Still waiting on the immunofluorescence studies of the suspected DH- I explain to the derm's office that if it comes back positive we don't have to do the scope..... She says, "Well don't you think they need to go ahead and do the scope to see what is going on?" NO. No, I don't. The scope...
  8. wmramsel
    My daughter reacts same day or within the next 2 days. It varies
  9. wmramsel
    Nope. They told me their courier comes every day at 4 and to feel free to call. The nurse said she would call me as soon as she got the results, but I called yesterday before she looked at the reports. As far as pharmacies go- be prepared to have to call the medicine manufacturers and for them to give you a canned line of "we do not certify our products...
  10. wmramsel
    Totally stealing this idea......
  11. wmramsel
    My little girl goes to preschool part day- they have a snack and a lunch that we pack. The teachers always tell me when someone is bringing in cupcakes or something for birthdays, or if they are having a party they tell me what is on the menu. I let them know what she can or can't have on the menu, then bring in an equivalent cupcake or cookie for her that...
  12. wmramsel
    Plus, when I google pictures of psoriasis, that is NOT what her rash looks like at all. Once the blisters pop, dry, and then eventually peel, they kind of.....sort of...maybe look like that- ish..... It is a stretch.
  13. wmramsel
    IKR!! I wanted to be like, well, thanks for the waste of money....we already knew she had eczema, and if the DH test comes back positive, it probably isn't psoriasis! I don't think it is psoriasis, but if it is, it is just another Celiac symptom......
  14. wmramsel
    So the biopsy of the blister came back.....inconclusive with possible diagnosis being eczema and psoriasis.... Well I could have told them that. The immuno-florescent study of the uninvolved skin has not come back yet. The nurse said "well it says it is not diagnostic of DH"- Duh. I told them the biopsy of the blister wouldn't diagnose DH.
  15. wmramsel
    Well it is a darn good thing I knew where to biopsy! The NP we saw was adamant on biopsying the actual blister. I told her 3 different doctors and all I'd researched said it had to be beside it with uninvolved skin. They called the pathologists and ended up taking 2 biopsies. They are going to do a full pathological workup on the biopsy of the blister...
  16. wmramsel
    I did know that! And I'm going to be positive they do it right! I don't want anyone else dropping the ball....
  17. wmramsel
    So despite my pediatric office's referral department completely dropping the ball (twice), we have an appointment with a dermatologist to biopsy what we think is DH. She broke out with the first few blisters last night, we have an appointment for 10:30 this morning (long story, but a miracle happened there). Hopefully if this test comes back positive we...
  18. wmramsel
    I spoke too soon....I came home from work to her eczema out of control and she was up half of last night with severe stomach cramps/ache
  19. wmramsel
    Gotcha. Seems like everything about this disease is "it depends."
  20. wmramsel
    I might be wrong, but I thought if they have the genetic markers but are not symptomatic, you SHOULD feed them gluten. Again, I could be misunderstanding....
  21. wmramsel
    Wow, thank you for bumping this 'survivormom'- I noticed that my daughter would get a cough after being glutoned...I thought I was nuts....
  22. wmramsel
    I am!! I actually had her sleep with us (she never does) the first night we added gluten back in (a whole 18 goldfish over the course of the day, lol!) because she threw up in her crib after the ER visit and we didn't know it until morning I felt terrible! No, blood work will be drawn when they do the scope. The GI didn't want her on gluten very...
  23. wmramsel
    So if you don't remember- tried gluten challenge about a month ago and ended up in the ER the first day. HUGE reaction. Fast forward a pediatrician's visit, allergist visit (all negative), and a gastro visit, we are doing another gluten challenge with less gluten. Endoscopy scheduled for June 27th with blood tests. So we start out small with just...
  24. wmramsel
    My daughter's first GI appointment is today....I'm so nervous! I don't know why, I'm not sure what else he could tell us that I don't already know or suspect. But I'm so, so nervous.....
  25. wmramsel
    I'm new at this as well, so I don't have much insight. But I have found that the testing is pretty unreliable in children/babies. That could explain the ups and downs. If I remember correctly, IGG is more accurate than IgA, and IgA is notoriously unreliable in kids. Did they talk about an scope and biopsy? Anyway, just wanted to say hang in there...
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