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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 gets 3 different types of skin rashes when she is glutoned, the most frequent is eczema, the other is what I think might be DH. The next is one that just stumps me. But anyway, here is the best pic I can get from her last reaction- it is a mix of the DH-ish rash and the eczema. What do you think? Please let me know if the url doesn...
  2. wmramsel
    Steroids don't work very well on what I classify as her DH rash. It is blistery and nasty, itches her like crazy (she digs deep scratches into her skin where the lesions are), and is painful for her. We end up putting anti-bacterial cream on the blisters to try to avoid an infection from her scratching, and because it is located on her bottom for the most...
  3. wmramsel
    Oh dear. Ok. I didn't know that. We have been using the 1% hydracortisone cream, and have recently used the prescription 2% hydracortisone cream for her. We just got a prescription from the allergist, and my husband is going to pick it up today. I didn't ask if it was a steroid, but will ask the pharmacist. If I remember correctly it is called Dermatize...
  4. wmramsel
    That is ridiculous! I definitely didn't feel dismissed by the allergist, just that since we had the gastro appointment already, that the gastro would be the best person to treat her moving forward. I am worried about being passed around and landing on the "non celiac gluten intolerance" dx just because we can't do a gluten challenge w/Celiac blood...
  5. wmramsel
    Ok, I'll call the pedi now. Our pediatrician is really good, but I can definitely understand the need for the referral now and not later. Especially since it took us 2-3 weeks to get in with the Allergist and Gastro. They should do a skin plug of one of the blisters, right? I'll be sure to ask before hand how they do it. We have been putting a steroid...
  6. wmramsel
    Yes, he is also an immunologist. He said the next step would be the gastro (for scope) and a dermatologist for official diagnosis of the DH. Her rashes have basically healed since her reaction 3 weeks ago, and we have been back to gluten-free since, so there wasn't anything he could really go on as far as her rashes. He did tell us from the get go that...
  7. wmramsel
    Thank goodness hers is not anaphylactic. At least not yet. She did have coughing after we attempted the gluten allergy, but didn't seem to have trouble breathing. Her symptoms are so all over the board- I mean she is in, what, the 10% of Celiac's who have predominantly skin issues? IF she has Celiac, we call it that for simplicity sake instead of having...
  8. wmramsel
    Exactly! I re-read my first post and realized it wasn't clear after I had mentioned the other things she was tested for. I'm really banking on the GI doctor- he has Celiac himself. The Allergist said that we should call the pediatrician as soon as she has another break out of the suspected DH so we can get a referral to a dermatologist right away...
  9. wmramsel
    Open Original Shared Link
  10. wmramsel
    Omgoodness- I just realized something, too. I did NOT mean that I would rather her have allergies in general- that definitely warrants the above reaction! I just meant the wheat- not the rest they tested for (peanut, milk, etc.)! They just sort of did that as a precaution since her symptoms haven't been real definitive of anything. I talked with the allergist...
  11. wmramsel
    I know. I know exactly what you are saying, and that is why I feel terrible about it. I didn't really want to put words to it. I'm not even really sure if that is the way to describe it, or if it is just disappointment that I'm not really much closer to anything definitive. I'm not meaning to say that either one is "fun" and by no means did I ever say...
  12. wmramsel
    We had my daughter tested for allergies yesterday- various indoor/outdoor nasal allergies, then wheat, barley, oats, milk, eggs, and peanuts. Everything came back negative. I asked the allergist if there was any way that she could have those allergies and the tests came back negative and he said basically no. He did tell us to be sure and get a referral...
  13. wmramsel
    Thank you! I definitely will have to start calling ahead. Usually we go out on a whim when I don't want to cook. We very rarely go out, so I really haven't had to deal with it much. I wouldn't even think to ask about grill and separation practices. Oy.
  14. wmramsel
    A friend of mine, who's daughter age 6 was just diagnosed Celiac about a month ago, went to a local restaurant. When she asked the manager while they were waiting about their gluten-free items and kitchen practices, etc, the manager rolled his eyes and told her that "gluten is the new peanut" and basically treated her as if she were "inflicting" this on...
  15. wmramsel
    My daughter (2 1/2 yo) gets 3 different kinds of rash (all itchy) when she has a gluten reaction. At first it was just DH, then we added eczema (when we added gluten back into her diet at 14months, long story) and a 3rd when she had an extreme gluten reaction after we had been gluten free for 6 months and wanted to get her officially tested. I make...
  16. wmramsel
    Thank you- I'll make sure they do all 4. I am pretty sure we accidentally glutened her over the weekend- my mom wasn't thinking and put her in the same highchair that her brother was just eating cheerios in. Her rash started getting worse again.
  17. wmramsel
    She definitely has skin reactions to gluten-would this make a skin test more accurate? I have yet to delve into the allergy world. I'm so overwhelmed with all this- it is intimidating.
  18. wmramsel
    We actually just tried a gluten trial with my daughter after being gluten free for 6 months. We also ended up in the ER. Within 15minutes of ingesting 2 slices of bread she had: 102* fever; 2 different kinds of spreading rash that was painful, blistering, and itchy; projectile vomiting; and irritability. The next morning she had a 3rd kind of rash that...
  19. wmramsel
    I have no idea why this posted twice, I tried to delete the second one and couldn't figure it out. For whatever reason this website works only sporadically at my home and this is the first I've been able to get it to work. We have seen prior reactions- ended up in the ER.
  20. wmramsel
    To try to answer all of the above: It is definitely a gluten issue, but we don't know if it is celiac or an allergy. StephanieL has mentioned from my previous posts that it sounds more like an allergy. We tried gluten trial and ended up in the ER- so no gluten challenge, no celiac blood tests.
  21. wmramsel
    Thank you! I apologize for the double posting of this thread, I'm not sure what happened. Gluten is definitely the #1 problem. It is a matter of whether it is Celiac or an allergic reaction. She is off of gluten, so it is going to be a diagnosis by elimination of other things. Both the GI and the allergist come highly recommended, so that gives me...
  22. wmramsel
    We have an allergist appointment on June 3 and a GI appointment on June 11 for my daughter. What are your suggestions? Things you wish you would have asked, things to make sure to ask, things to look out for...etc. I don't want to miss anything! TIA!
  23. wmramsel
    We have an allergist appointment on June 3 and a GI appointment on June 11 for my daughter. What are your suggestions? Things you wish you would have asked, things to make sure to ask, things to look out for...etc. I don't want to miss anything! TIA!
  24. wmramsel
    I called and they said "under 19 is normal." They couldn't tell me anything about what it should be on a gluten-free diet or otherwise.
  25. wmramsel
    Thanks! I'll be sure that one is on the list of whatever they do. Trying to decipher all this from the internet is really difficult
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