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Everything posted by arismama

  1. I think it's been a while since I updated post-scope, so here goes. Biopsy came back showing heartburn, no signs of Celiac. Daughter had a check up the other day with a new ped and after going over virtually all of her history, they put in for a sweat test to check for Cystic Fibrosis. I think I would have been more relieved if they said it was celiac disease instead, but hoping for the best still. The idea of CF hasn't quite kicked in and I sure hope it's not the outcome, but it would be a start to getting treatment. Thanks to all for your help with my Celiac questions and for your support during this time of uncertainty. Jen
  2. Thanks everyone for your input. Regarding the bloodwork, I don't know exactly what was tested - all I know is it was a Celiac panel and the GI said that the levels that showed elevation were common in 25% of the population. In other words, he seemed to think it wasn't red flag material. I'm not sure if that was IGA, IGE, etc. He is going to see us in a few weeks and has us doing a food diary in the meantime. (Man, I hate those things!) We had the sweat test today - 2 tests, in fact. My daughter produced zero sweat (even with 2 layers and a thick coat, running around) so the results are inconclusive. The technician said they might have done a newborn screening or prenatal screening on us, so I called my midwife's office and they said it wouldn't have been done if CF isn't suspected. The NICU at the hospital where she was born doesn't do CF screenings routinely, either. So...I have to wait to see if they'll do DNA analysis to at least check if she is a carrier or what. Not sure what all they will find out with the blood work. I think if CF isn't the case, we're definitely going to talk more about Celiac, at least gluten sensitivity. I told the GI that even after a few weeks on Prevacid, she didn't seem to be a happy child. He thinks it is food allergies and I although I work very hard to keep my daughter from getting "contaminated" I end up second guessing myself because her skin flares so often. (Then again, I have eczema and no known allergies, so who the heck knows?) Sure is frustrating. Well, thank you again for all your help. I think I may print out the thread so I have something for the GI to see. (Don't they love it when we do that?! lol) Jen
  3. My 16 month old had her scope yesterday. All went as well as could be expected. My daughter was given fentanyl (morphine type for pain) and versed as an amnesiac. She did great once the drugs kicked in. I did great once I had her back in my arms again. The scope revealed a very nice looking esophagus and stomach lining but her duodenum (leading section of the small intestine) didn't fare as well. It showed some signs of bleeding and looked "ratty" as described by the GI. I forgot to ask afterward, but before the procedure he told me he'd take a minimum of 10 samples from various locations. He is convinced based upon what he saw (and the fact that her eczema had a major flare up yesterday) that it is a food allergy and still holding to the idea that it is not appearing to be celiac disease. We will know more when the biopsy comes back. There is a possibility that it could be a bacteria, but the labs will have to reveal that. He wanted to go down the list of the big 8 food allergens and consider the next step in eliminating them from her diet. I told him that beyond the milk and egg, the allergist has us avoiding all nuts, fish, and shellfish. He said, "Well, that would have been the next step, but it sounds like he has you on the right track." He also mentioned a few different meds she could take to counteract whatever allergen is irritating her intestines. But for now he said that we should continue what we've been doing and then we'll talk once the results come in. I sure hope there's something revealing in those biopsies. Anyway, there's our little update. Jen
  4. Just wanted to add that I wish you luck as well next week. I hope it goes well and they find the answers you are looking for. -Jen
  5. Well, my 16 month old daughter is having her scope on Friday morning. While waiting to see the GI, we had more allergy testing done and found in addition to the off the charts milk allergy, the whole egg and egg whites are off the charts as well. The ped GI noted that her gliadin was low but the levels that were high (I wasn't scribbling fast enough) were high in 25% of the population, so he wasn't convinced of celiac disease based on that and even after having seen my daughter in person. We have our scope in a little more than 24 hours. I just found out that they don't allow parents to accompany, so I'm a little bit sad about that. Maybe it's for the best, though. I forgot to ask about the amnesiac. My daughter has major anxiety just being in the same room as other people, so I know it's going to be a long day for her. Question - do they have to look for celiac disease specifically or will they know it when they see it? Anyone know if the same goes for things like eos/ee? I don't know whether or not to hope they find something. It would sure be nice to figure out what's been causing the failure to thrive as well as her irritability, etc. For those of you that have gone down this road already, any tips, advice, questions or subjections I should bring up with the GI? Thanks much!
  6. Thanks for all the advice and support. In my logical mind I know it's a pretty quick, common procedure that carries few risks, but as a mom...well, what can I say...I'm a softy in that area! I know she'll be fine. For the record, we are going to be doing a biopsy (will ask how many samples). I was told by the nurse that the sedation will be partial but deep. Not my first desire, but considering that I don't believe my daughter has been put under before (she was in the NICU at birth) it may be best to forgo general anesthesia unless it's totally necessary. Wish us luck tomorrow morning. I'll post an update when things settle back down. Thanks again for everything! -Jen
  7. Greetings! We're new to the idea of a gluten-free lifestyle and I've been doing some checking around for natural food stores. So far I've come back with a couple of "big" ones - Whole Foods and Sun Harvest (part of the Wild Oats family). Does anyone shop at one of these where you live and is it worth the trip for a gluten-free? Do you find what you need there? I want to be prepared with gluten-free food, as I expect my daughter will have to make that switch in the near future. Also, a bit OT, but my daughter is milk-free (possibly all dairy considering her reaction to food w/egg this past week) and I was wondering if anyone happens to know if either store is DF friendly as well. Thanks much!
  8. So they actually have the gluten-free sectioned out in certain areas? I was wondering if they did that or if you would just have to read labels throughout the store. I was debating printing out the two stores' product list. They keep one handy in the store to help with shopping? That would be great. Thanks to all who gave feedback. This board has been super!
  9. Just curious if any of you have purchased a medical bracelets for your children. We are undiagnosed for the time being (waiting to see the GI) but was just wondering if you felt that Celiac warrants the bracelet. (As a sidenote, my 15 mo old daughter is allergic to milk, still doing tests on that, but was given an EpiPen Jr.) What are your thoughts on this? Thanks!
  10. Hi everyone...this was PM'ed to me from Laura (mommida). She's still getting hang of the forum, but wanted to post this. Hey Laura, if you're reading this, you can respond to the post by clicking on the "Add Reply" button at the top of the thread. It is a little hard to find if you don't know where to look. Hope that helps...Jen "My kids 2 and 5 years of age are on a gluten free diet. Yes, a medic alert is an excellent idea. My daughter was given an antibiotic with gluten in it for an infection. Needless to say she was admitted to the hospital after two doses for dehydration. From what I have read a celiac or dermitis herpetiformis patient is also more likely to have a reaction to iodine. Iodine may be used in an emergency situation for disinfection of wounds. Please correct me if I am wrong. Anyone? An iodine patch is used to erupt the skin rash for dh testing. Laura"
  11. Well this has been a lot of interesting information. Thanks to all for your input so far. I thought I'd get far more "not necessary" responses than I have. We have an upcoming appointment with the allergist to do skin testing for the milk and related allergens. Maybe something will be revealed there that will help make the bracelet decision. I will also ask the allergist what his thoughts are on this. I'd like to hear his opinion, as well as the GI when we finally get in to see him/her. Thanks everyone! Jennifer
  12. Hi here. My daughter's ped recently did an extensive blood draw on her and her Celiac panel came back with red flags. I don't know exactly which (thinking iga) but the ped said it definitely showed levels indicating possible celiac disease. I have read that true diagnosis is confirmed through biopsy. Then, I've also read about endoscopy. Are they referring to the same thing, just specific method? My daughter is 15 months old and terrified of others (esp. docs) so I'm guessing they have methods where anesthesia is allowed? So I've read, anyway. I know you guys probably get this type of message all the time, so I'm sure I'm asking the right folks. I guess I'm just trying to figure out what to expect next. We don't see the Ped GI until mid-November. Thanks much!
  13. Thanks Richard & Renee for your input. I'm not sure how extensive the Celiac panel was that they ran, but I know my daughter's ped wouldn't go so far as to say that it was definitely celiac disease. I think they should leave that up the GI folks, anyway. She did say to keep a stool sample stored in the fridge in case they wanted to check that out as well. My daughter doesn't really have diarrhea very often at all, but she's failure to thrive and has the irritability as well. I thought the wait to see the GI was long myself, but then I was told my friend had to wait up to 4 months so it didn't sound too bad! Does anyone happen to know how long the endoscopy takes and if they usually let the parent(s) accompany during the procedure? Jen