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stacytr

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About stacytr

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  • Birthday August 9

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    S CA
  1. More info here: http://www.motherjones.com/tom-philpott/2012/09/waiter-theres-arsenic-my-rice As someone pointed out earlier and according to this article, the problem isn't rice in general, but rice in the USA that's the problem. It's basically grown in the South and California. You might want to check/email/call where manufacturers get their rice from (and then post here!)
  2. I realized that I hadn't updated here. Emma had her endoscopy in late July. The results came back less than a week later -- she is definitely celiac. She has gained 3 pounds this last month+!! (This is after not gaining anything this last year) She has also measurably grown too (but I can't remember by how much). I am so thrilled for her (though she's heavier now and harder to carry -- didn't expect so much growth so fast!) I feel badly that we were giving her food that was hurting her My son tested weakly positive on the TTG part of the labs and based on some symptoms for him (not as clear as Em) and the fact that Em is positive Ian will get biopsied soon. My labs were negative and I don't really have any symptoms. My husband has some regular acid/heartburn symptoms and I've been begging him to contact his doctor to get labwork done. If he turns out positive we will definitely try and see Dr. Harmon. Thank you for your care and concern. It feels like a steep learning curve -- but we are getting there -- and trying to avoid cc. (we are getting better at that)
  3. Just remember that if the blood tests being ordered include a celiac panel, that you need to be consuming glutton for some period of time for the blood test (or an endoscopy) to be valid.
  4. My kids both nursed till they were 4, and were delayed in eating solid foods. We are currently pursuing a celiac diagnosis for my daughter, but I'd be willing to bet that the reason she's doing so well despite her very high lab #'s is the protective benefits that nursing provides. WTG to your mom!!
  5. I just wanted to update -- this is my post from my doctor thread. Ok we had our appointment with Dr Liu at the Arcadia extension of Childrens Hospital Los Angeles. First impressions: I REALLY liked him. He was kind, good presence, gentle with Em. He really listened and really answered our questions. I had printed off the stuff about the new guidelines -- he read them through and gave a thoughtful response. He talked about why he still wanted to do an endoscopy. He said that he wouldn't be surprised to see those standards become common practice in a few years -- but it's not there yet -- not all the celiac organizations have embraced and said yes this should be/will be our new standard of diagnosis. He also said that since one of the lab tests must be read by a tech, that it too can show false positives/negatives. He wasn't at all dismissive of them (like the first doctor I talked with on the phone). Endoscopy is one of his fields of expertise -- which was reassuring -- he's done a LOT. He said he would do at least 6 biopsies and do the duodenal bulb. He also referenced Dr Pietzak, and it was clear that he respected her. He also said she was a resource if a case wasn't clear. All of it really made me feel MUCH better. I fel like we are in good hands. I liked him, but more importantly I trusted him. We will get the scope. I really thought about what different people here said -- and I was very persuaded by the idea that if we ever thought we might want an official diagnosis (scope) that NOW is the time to do it. It won't happen till mid July -- after our big trip to Canada. That does make things easier for us re traveling and being in a small town in Alberta Canada -- but we were prepared to travel gluten free with her. Thankfully she has not been miserable -- stools are much looser again and regular bouts of hives -- but she's still herself -- so I feel much better. I was kind of emotional after the doctor visit -- it's just a lot of energy expended thinking/worrying about it all. But I am so glad that I got a new referral to a different doctor. Thank you again for all your hand holding. I've learned so much already. I will update again after her scope. And I'll of course be researching about scoping before the appointment. I'm assuming I would just do a search for scope or endoscopy on this sub-forum? I just want to make sure I'm prepared for it -- I think Em will be fine -- we said they use a little tube to go in her tummy and take little pictures of everything. We are trying to not make too big a deal out of it for her.
  6. Ok we had our appointment with Dr Liu at the Arcadia extension of Childrens Hospital Los Angeles. First impressions: I REALLY liked him. He was kind, good presence, gentle with Em. He really listened and really answered our questions. I had printed off the stuff about the new guidelines -- he read them through and gave a thoughtful response. He talked about why he still wanted to do an endoscopy. He said that he wouldn't be surprised to see those standards become common practice in a few years -- but it's not there yet -- not all the celiac organizations have embraced and said yes this should be/will be our new standard of diagnosis. He also said that since one of the lab tests must be read by a tech, that it too can show false positives/negatives. He wasn't at all dismissive of them (like the first doctor I talked with on the phone). Endoscopy is one of his fields of expertise -- which was reassuring -- he's done a LOT. He said he would do at least 6 biopsies and do the duodenal bulb. He also referenced Dr Pietzak, and it was clear that he respected her. He also said she was a resource if a case wasn't clear. All of it really made me feel MUCH better. I feel like we are in good hands. I liked him, but more importantly I trusted him.
  7. Interesting -- maybe they've changed things? I told her that Emma was positive on her celiac panel from her bloodwork. I told her I could give her the #'s over the phone if she wanted. She said to bring that in, but that the GI would be the one to officially diagnosis. So it seemed that as far as CHLA was concerned we were not yet confirmed Celiac.
  8. Thanks -- Em's not actually very thirsty or really peeing a lot -- she just FEELS like she has to pee a lot (so a lot of urgent feelings without a lot of output). But when they tested her for UTI they also looked at sugar and said it was fine. I will definitely let them know though. I didn't know there was a connection between diabetes and celiac. We will be getting my son tested as well very soon and are planning on getting blood tests for us too -- though my husband and I both feel fine with gluten. Do we need to remove all gluten from the house? Are there ways to still have gluten stuff for the rest of us and non-gluten stuff for her? I can tell I'm going to need to read a lot more about contamination and cleaning and just household management.
  9. Thanks so much for letting me bombard you with questions. We have a CHLA authorization and when I called they said that Dr Pietzak would only see us if we were confirmed celiac. The receptionist booked us with Dr. Liu and said a lot of positive things about him when I grilled her about him. Hopefully Emma's case will be more straightforward than your daughters' and we won't have to go through so much. I'm so glad you are on the other side of it all -- It must have been maddening in the middle of things. Take care and I'll update here with my first impressions of Dr. Liu.
  10. Ok -- sorry -- last one I swear! I just don't know anyone else who knows anything about GI docs! Are you familiar with any of these docs at CHLA? (Arcadia extension) Chuan-Hao Lin, MD Quin Liu, MD Jaya Punati, MD Ardath Yamaga, MD
  11. Mamaupupup! I was on the phone a lot today -- with CHLA and then our medical group trying to determine if Dr Pietzak was a covered specialist. Finally I just called our pediatrician's office and asked if we could be referred to the CHLA extension right here. They said YES! They couldn't guarantee that we'd be able to see Pietzak -- but we can try. Thanks so much for the recommendation -- hopefully we'll be able to get in with her -- but if not I REALLY hope the other people are good too!
  12. I just find this a little bit funny -- Em doesn't eat that much compared to other kids on any diet! But thanks for your feedback -- that helped me
  13. Oh I am sorry you had to go through that with your daughter! It's so scary when little ones have to be hospitalized! I SOOO appreciate the support and lack of judgement. We have decided to go ahead and do the scope -- and have reintroduced gluten. It was a tough call and we went back and forth -- but the idea that a definitive diagnosis might be helpful down the line and that she'd only been off a few days (and so hopefully wouldn't react too badly) finally swayed us. The GI we've been assigned to (HMO) won't diagnose without the scope. I don't like it, but I know that's not uncommon. I'm just praying he's halfway decent. So far it's not been terrible (we started last night) -- though she hasn't eaten a lot. How much gluten does she need to be eating to have the test be (hopefully) accurate? Do we have to give it at every meal or is once a day enough? Does she need to eat a lot of it (a meal of pasta) or is a little ok (like a cookie or pretzels as a snack). I asked the GI, but all he said was just to put her back on her old diet (which was a LOT of gluten stuff at every meal). Thanks again for all the help and support.
  14. You can also had a little bit of blackstrap mollasses to oatmeal (gluten free). It's very high in iron. My daughter only liked table foods as a toddler so you could also cut into strips some gluten free nuggets or just some chicken pieces. Dipping sauces make them fun too (if a bit messy). Basically everything was finger food for mine when she was little! More info here: http://www.vrg.org/nutrition/iron.htm
  15. Ok new question. Would you recommend any of the CHLA ped GI's? I spent an hour on the phone this morning just trying to find out if she was a contracted specialist with our medical group. So far, the most I've gotten is that we can petition to get her, but usually the way these things go is that they turn it down if there's someone else in network. I was thinking to ask if I could just be referred to the CHLA ped GI office right here in Pasadena so we don't have to drive so far.