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About PhoebeC

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  1. Hi Anne, We did the biopsy with our daughter, and although I know it's awful to put your child through these tests, it feels good to have all the necessary data about what's happening. Although celiac is the most common cause of the elevated antibodies, it's possible it could be caused by a different autoimmune disease, and you really want to know for sure. 2 days off gluten isn't going to ruin the test, but you should consider putting some gluten back in her diet until you make a definitive decision about the biopsy, since reintroducing it later will be harder. Although we'd rather not have done it, the biopsy wasn't all that bad of an experience for us. Good luck.
  2. Thanks. She has normal B12 and zinc levels and from her blood work she does not appear anemic. Although she was not tested for vitamin D recently, she almost certainly has low vitamin D since it's winter and we live in the north. She was on supplements last year (before diagnosis) at the suggestion of her allergist, but she went off them because they were not gluten-free. I will ask her doctor about adding gluten-free vitamin D supplements back into her diet. Thank you for the suggestion.
  3. Hi everyone, I thought it might be helpful to check in with an update. My daughter is doing better--not perfect, not amazing, but better. Her bloodwork is improving (TTG-IGA from 112 to 43 in 3 months, CBC normal). She's less nauseated in the evening and is able to get enough calories most days. We've figured out some of her anxiety triggers and realized that she does much better if she sticks to a predictable schedule of eating ("relaxed" weekends where there could be unplanned eating--previously considered "fun!"--are really hard for her). She hasn't really started gaining weight, but she hasn't lost any more, and days are much more consistent. We started seeing a psychologist with her and she started yoga class, both of which she likes and seem very helpful with the mind-body connection. The biggest challenge has been knowing which of her symptoms are anxiety related and which of her symptoms are physical signs of celiac, since vague nausea and lack of hunger could really be either/both. I truly appreciate all the advice on this forum. Hearing your experiences and what has worked for you has been so, so helpful. For other newly diagnosed families, I also wanted to share that sometimes spending TOO much time this forum has been a little overwhelming and anxiety provoking for me. Not because there's bad advice but because the "informed brainstorming" model of the forum produces so much advice! I think it's good to remember that you shouldn't take all the advice at once, and that it's important to have doctors you can trust to go over everything with you personally. I think many (not all but many) of my daughter's current symptoms are anxiety related. I'm glad we decided to work on just good mental health + very strict gluten-free diet first, because if we had also cut out casein, lactose, corn, etc. at the same time, we wouldn't have been able to determine exactly why she was feeling better, and we might have unnecessarily restricted her diet. I am keeping open the possibility of cutting more things out of her diet in the coming months if she doesn't improve more--and I'm glad to know about all the possible reactions to other foods--but for now it seems like working on anxiety has been the most important piece. Thank you all! best wishes for a healthy gluten-free holiday.
  4. Just wanted to revive this thread with an update. My daughter's appetite/calorie intake is slightly better these days, especially in the morning--though overall I'd say that she usually still has to eat deliberately rather than out of true hunger. The main problem is that she still feels terrible most evenings. She often can barely tolerate dinner some nights (we don't force it, and she eats enough at breakfast/lunch/snack that she can do without major evening calories). She describes it as a general malaise, "like when you have a fever and you feel a little nauseous and bad all over, not really hurting in one specific place." No diarrhea, cramping, or other specific GI symptoms. It seems much more related to time of day than to anything in particular that she's eating. She's still eating no oats. She has a relatively low-lactose diet--a little milk in her morning smoothie (that doesn't seem to affect her at all), doesn't like yogurt, occasional hard cheese that would be low in lactose already. Her diet doesn't vary a lot right now. She uses ginger chews and ginger tea. We're exploring probiotics and did take them a few times, but her celiac specialist warned that some probiotics are grown on a gluten-containing medium and we are awaiting a list of approved probiotics from her nurse. We are aware that there is probably an anxiety component--she's definitely anxious--but we also don't want to discount her symptoms after all those years of thinking she had a "nervous tummy" when it was really celiac. Does anyone have other insights or suggestions to help with evenings? thanks!
  5. We are going to try to make our own this year, but I've seen some great gingerbread houses made out of graham crackers. There are plenty of gluten-free graham crackers out there--Pamela's are nice and sturdy for building! If you make your own, the nice thing is that you don't have to worry whether it tastes good.
  6. Thanks for sharing your story. It does sound very similar to my daughter, especially the "witching hour." Please post again if you find anything that turns out to be successful! It's helpful to hear others' experiences.
  7. Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it. She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was.
  8. My 10 year old daughter has been on the gluten-free diet for 6 weeks, and she's feeling worse than before the diagnosis. She has very little appetite, has frequent nausea in the evening, and has lost a pound or two that she really can't afford to lose. Our whole household is gluten free except for a few prepackaged items kept in a different room, so I think there's very little chance of cross-contact. She has been put on cyproheptadine to increase appetite and is trying valiantly to eat more, but she's just not hungry and it's very stressful for her, and all of us. She's eating peanut butter, pediasure, avocado, cheese, meat, and all the other calorie-dense foods we can think of. No oats, not too much processed food. Can anyone give us suggestions or hope that this will turn around?
  9. Thanks, all. I had to take a few days away from the forum because I was making myself insane with research. There are a lot of experts on these forums, but also a lot of other anxious people, and it wasn't really helping my state of mind! So I think I was wrong about the oats recommendation from our doctor. I apologize for the mistake. We still haven't had the follow-up appointment, but some materials that I read indicate that they do recommend staying away from oats until your blood test numbers indicate that you're recovering well. Thanks for steering me in the right direction. I wish I could get past this early learning curve stage and be an expert already, but the only way out is through.
  10. OK, thank you. We have an appointment with her GI doctor soon, so I will discuss all this with her and make a plan. Honestly, the risk for me and my daughter is not failing to understand the benefits of being gluten free. It's being filled with constant anxiety, stress, and hypervigilance. I've been doing nothing but research for the last 2 months. My daughter has a vigilant, cautious personality already and it's breaking my heart that she won't get to be more carefree. It's only been 2 days and she would NEVER play around with "cheating." She's already reading labels and knows the symbols and warnings to look for. I am trying to understand how we can be psychologically healthy as we make this transition. My husband is more of a chill personality; I am a worrier and a researcher by nature. I guess I was trying to get some reassurance that I'm not going to give my daughter lymphoma by allowing her to make the "certified gluten free oat ball" recipe she found. But maybe I'm barking up the wrong tree here.
  11. Re: giving up oats before reintroducing, I don't think that's our doctor's recommendation (and we are at a major children's teaching hospital with a specialized program for celiac, doctor is MD/PhD). Why not do it the other way around: keep certified gluten-free oats in, and then eliminate later if she's still having trouble or her bloodwork is still positive? Not mechanically separated oats, but Bob's gluten-free? I understand the risk, and if it were me, I could handle it, but I'm trying to make this not emotionally devastating for her. It's hard enough to be 10. She wants to make homemade granola and other oaty things. If it's relevant: the doctor who did the endoscopy said that her intestine looked visually normal; biopsy was positive but she wouldn't have known by just looking at it, so it appeared that not much damage had occurred yet.
  12. Thanks, this is helpful! I did read the newbie thread. Wifey, interesting story about your daughter's rash--it matches the timing of my daughter's reaction. I've been researching for 2 months, since the blood test, and my daughter has only eaten gluten-free since her biopsy. It just feels overwhelming now that we actually have to do the clean-out and think about how to make the house safe. We're going to reorganize and clean this weekend. It's a lot of pressure to do this right so I'm just trying to get a handle on how fast is reasonable. Believe me, I wish I could have done it all yesterday. I went to the store today about bought a ton of new food, some new utensils, and a new cast iron pan to start with. My daughter was excited about the options. Although I did buy a bunch of snacks, I'm mostly interested in limiting processed food and eating naturally gluten-free starches like cornbread, polenta, stir fry with rice. Tonight I made chicken with socca (chickpea flour pancake) on the side! It's kind of fun, but also a huge mental load right now. I'm also freaking slightly about arsenic in rice. There's always another rabbit hole to go down...
  13. This is my first post. Daughter, age 10, had a positive blood test in July, biopsy last week, and we got the official diagnosis yesterday. Everyone keeps saying to take our time with the transition to gluten-free, there's a lot to learn, etc. So for the last week, since her biopsy, she's been eating gluten-free; we've been testing foods to see what she likes, eating gluten-free family meals, but we have not started being vigilant yet about cross contamination, and haven't cleaned out the kitchen or discarded old utensils/cutting boards/etc. I'm wondering how long we have to perfect the system until she will start reacting to cross contamination--in other words, how long after going gluten-free do you become susceptible to being glutened? How long do we have to get it right? I know it might be different for each person, but does anyone have a general idea? I'm asking in part because she's been feeling surprisingly terrible since the biopsy and beginning to transition to gluten-free. She had an episode of vomiting and stomach pain 4 days ago, and has been randomly nauseated since then. But she couldn't be reacting more strongly to gluten already, could she, when we haven't even fully transitioned to 100% gluten-free yet? She ate gluten for 10 years, until last week, with only mild GI symptoms; lack of weight gain was the clue that led to testing. (BTW we did take her to the doctor and they don't think her symptoms in the last week are related to the endoscopy. She had a blood test and white blood cell count, sed rate are normal so it doesn't seem to be an infection.) thanks so much!