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About mom_to_claire

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  1. Yes she has been on colchicine since October and her fever attacks or "flare" have been pretty much non existent since then. She's had 3-4 minor fevers less than 24 hours which is a HUGE difference. She is doing great. And even since going back on gluten she seems to have more of an appetite, her mood seems different in a good way and there are no negative effects except for the last couple days of diarrhea. It isn't more frequent just looser. She had a semi-solid one today so we'll see what the next few days bring.
  2. Thank you for your reply. I must correct something though....FMF is not an auto immune disease it is an auto inflammatory disease which is quite different. She has been seen a few times by an immunologist and they are satisfied she does not suffer from any auto immune disease (with the exception of possibly celiac I guess). I'll have to read the link you have provided. My entire family (me, my husband and son) all had the blood work done for Celiac at the time we were trying to figure out if Claire had it and we all came back negative. None of us have symptoms. We only did the blood work because we knew that Celiac runs in families. I know that doesn't mean she doesn't have it but at least it rules us out. Her face seems better today and she hasn't had a BM yet today. We'll see how the rest of the weekend goes. My thought was that since she is being introduced to new foods it may take awhile for her to get used to them, just like any food regardless of the gluten content. maybe I'm just naive or have wishful thinking!
  3. I posted something similar in the babies and kids section but wanted to come here too. My 3 year old daughter has suffered from various things in her short life and while we were struggling to figure out what her problems were and find a diagnosis, I put her on a gluten free diet without getting her tested first. She was only 10 months old when we did this. As time has gone by we think that we have figured out what she's been suffering from all this time. The doctors believe she has something called Familial Mediterranean Fever (FMF) it is a Period Fever Syndrome which is an auto inflammatory disease. She was started on some medication in October and has not had a prolonged fever attack since then. she has seen MANY doctors in her 3 years of life including a pediatric GI who never really thought her symptoms pointed to Celiac but suggested we keep her that way since it seemed to be helping in certain ways but not others. ANYWAY...now that we have a pretty firm diagnosis which would explain many of her symptoms that we thought were related to gluten, we got the go ahead to do a challenge. We are 2 weeks into it and I think things are going well but she's had various issues that could be related to so many things. She is in daycare full time so she picks things up all the time. She has had some loose BMs in the past few days but they are not frequent. In fact she might only have 2-3 per day (her usual) but they border on diarrhea. She sometimes mentions her tummy is sore but it hasn't stopped her from being active or eating. Her appetite has actually increased since starting on gluten. Right now she has this weird redness on her face and under her eyes. It might be Fifth disease since it seems to be going around and she did have one low grade fever this week. I've never heard of a reaction like this to gluten but I guess it could be. My problem is that stomach pain, diarrhea, fevers etc are all common with FMF. She is going to have blood work done in May (she had baseline blood work done in early February) and if it is normal they aren't going to do an endoscopy until January 2010. My gut tells me she doesn't have Celiac or a gluten intolerance but I'm afraid that waiting a full year to do a scope is too long in case she does. I don't want to put her through a biopsy unnecessarily (she had to have at least 3 procedures where she's been under a general anestetic (sp?)) I guess I'm just babbling here because I'm not really sure what I need answered. I guess here are my main questions. 1. If after 2 weeks we aren't seeing a significant reaction is it pretty safe to say we won't see one? 2. Even if the blood work is negative and she doesn't have symptoms, do you think we should insist on a scope before January 2010? 3. has anyone ever had red cheeks/eyes from being glutened..this didn't start right away, it was after a full week on gluten 4. Has anyone ever heard of people who have FMF and was there any correlation to gluten? Thanks Karen
  4. I have a very long story about my daughter but I'll spare you the details. She has been gluten free since she was 10 months old...she just turned 3 a couple weeks ago. She has never had a diagnosis of celiac which is why we are doing this challenge. She has multiple medical issues that have all pointed to a period fever syndrome (after many, many, many hospital stays and procedures). Her doctors think she might have FMF (Familial Mediterranean Fever) or TRAPS (I forgot the full name right now). Looking back on her symptoms and why we put on gluten free in the first place,everything is pointing to these fever syndromes and not Celiac. It is our feeling that she doesn't have a gluten sensitivity or intolerance at all. So we have now started her challenge. We are on day 3 after consultation with her pediatric GI specialist. I don't even really know what to look for. She seems to be doing great. She had a pancake on Saturday, 1/2 whole wheat bread and some Kraft dinner (1/8 cup) on Sunday and a 1/2 waffle today. The only thing I've noticed is her stools are a bit softer than normal but she has soft stools most days and it is not diarrhea. I know everyone is different but if she was going to react with symtpoms do you think she'd be showing them now? I know that only a biopsy can tell for sure and she could still be symptom free. We'll cross that bridge when we get to it. She is supposed to have the equivalent of 1-2 slices of bread per day but we are starting out slowly this first couple weeks. She'll see her GI in July for blood work. I know most of you on here do have kids with Celiac or some sort of sensitivity so if you ever did a challenge did you know right away? Thanks for your help. Karen, mom to Claire
  5. Have you tried the pizza yet??? I sent an email to them asking about their procedures to avoid CC and am now willing to try it but haven't had the opportunity yet. We live north of Toronto and our local Pizza Pizza isn't part of the pilot.
  6. Hi, I'm not sure I'll be much help but your post sounded a bit like my life a year ago. My daughter first had a severe reaction to rice cereal at 5.5 months old. It was her first solid food. Within about 3 feedings she was vomiting so much that only yellow bile was coming up. We did try it a few more times but basically gave up and she was only getting fruits and veggies for awhile. I could write a novel about our trials and tribulations with our daughter. She had the same reaction to oatmeal when we tried her on that at about 7 months. It wasn't until 10 months we tried her gluten free. She has never been diagnosed with Celiac and may never be since I won't make her go through a challenge if she has any symptoms. We are planning a challenge in a couple years. She is only 2 now. ANYWAY..my daughter eats rice all the time now with no problems. I'm not sure when I reintroduced it but it is a staple in her diet. Feel free to email me if you want to chat. We went through hell for about 18 months (even though she was gluten free and it helped, she had lots of other problems that have sort of resolved with no diagnosis or treatment) Frustrating beyond belief but she is much better now although still has many more illnesses than other kids her age. Not sure I helped much but wanted you to know that your child might be able to eat rice at some point and not to stress to much about it
  7. I was just sent the gluten free menu in Word format and I can send it to anyone if they send me a PM. or if you just post your email
  8. We are sure my DD has a gluten intolerance but not sure if it is Celiac or not and probably will never know as I'm not about to challenge her any time soon. She is doing well in terms of her mood, sleep etc being gluten free but is still not growing. We saw a pediatric GI recently and he does not think she has Celiac due to the fact that she was anemic, low weight gain, cranky and miserable from very early on (pretty much from birth), vomiting on rice cereal which shouldn't have gluten etc. I don't know what everyone else thinks of that but he didn't think it was Celiac. He is sending us to an endrocrinologist for more testing and did some blood work to check for chromosonal abnormalities. My DD is almost 13 months and is only 15 lb 9oz and about 26 inches long. She is below the 3rd percentile. She didn't just start to fall off, she's always been low on the charts since she was about 3 months old. She was born 7 lb 8oz and was 19 1/4 inches (I think). Does anyone know or has dealt with this issue? I would think if she is responding well to the gluten free diet in other ways (mainly behaviour and sleep) that she should be gaining weight as her intestines are healing (provided she has Celiac).
  9. I have a question about stickers and bandages or anything really with a "glue". I've been reading the site and other sites to find out if the self adhesive stickers that kids love to play with are gluten-free. My one year old daughter is in daycare and they do some "crafts" once in awhile. Today, I went to get her and her teacher said "Oh Claire loved playing with the stickers". I had totally forgotten to mention that it might not be OK. Is it OK? She assured me she didn't put any in her mouth. Basically they put it on her finger and guide her to put it on a piece of paper. The other question I have revolves around some sort of reaction my daughter seemed to have from a bandage. She had her 12 month immunizations last week and all of a sudden after taking off her bandaids I noticed a really red, scaley type patch where one end of the bandaid was. She had 2 bandaids on her legs and there is only one part that is affected. It looks almost like when I took the bandaid off, it took some skin off and it got infected! The only other thing I can think that happened is that all the "glue" didn't come off when I took it off and that night she had a very explosive loose bowel movement that went everywhere. It is possible that the BM stuck to the glue and caused a reaction. I really have no idea but wondered if the sticky stuff in bandaids could contain gluten. We are still very new at this and still learning what she can and can't have.
  10. I was wondering if anyone is taking Palafer Iron Therapy Suspension - cherry flavour. My one year old daughter was prescribed it today and when I called GlaxoSmithKline they gave me some lame information about the fact they don't "add" gluten but can't guarantee the product is gluten free because they get their raw materials from other sources! What kind of answer is that???? I expect that they should know what is in their raw material. anyway, since anemia is common for those with Celiac I hoped that someone on here is taking it and can confirm I can start her on it tonight!
  11. my DD just started daycare this week. She is an infant so she doesn't know the difference. I was certain she had a gluten intolerance but now I think it might be more but don't know where to turn. She barely eats anything (and it is all gluten free and now we are trying lactose free) and is miserable all the time again. I tried to go gluten-free myself for a few weeks because we are still BF but it didn't make any difference. I have been providing her lunches all this week and it has been fine but once she moves to the toddler room at 18 months, I am not sure what will happen. Now they all sit in high chairs and there is no chance of other kids touching her food. I hope by the time she moves up, we will have a better handle on. I am quite stressed about it so I'm not much help to you!
  12. My daughter is almost one and has been on a gluten free diet since the end of October. First 6 weeks were great. Total change in personality, weight gain etc. Then a plateau. I decided that I should go gluten-free as well since we are still BF. Within a few days she was miserable again. It has been almost 2 weeks since I went gluten-free and she's back to her old grouchy self. She also just got a cold the other day so it is 10X worse. We are waiting to see a ped. GI at some point so I decided to go back to eating Gluten since it didn't seem to be helping. I've eaten gluten for 2 days now and DD is starting to improve. She still is not eating much at all which leads me to believe she still has some discomfort from something. What is going on? Is this just a coincidence? I am going back to work in 3 weeks and she is starting daycare on Tuesday and I'm totally freaked out because I can't get her to eat anything. I'm trying to wean her but since she isn't eating I'm BF more!
  13. I'm do not have Celiac but my one year daughter might. I'm still so overwhelmed with everything and the unknown. She has other health issues but we don't have any concrete answers. We are in Stouffville, Ontario (north of Toronto, near Markham!)
  14. One of my daughters has had testing for intolerances, and she tested intolerant to sugar and wheat. One of my son-in-laws tested intolerant to sugar as well. He gets terrible eczema all over from sugar, plus he gets stomach upsets from it as well, and I hear that as a kid, he refused to eat candy, because it made him feel completely out of control. How is one tested for intolerances??? I am sure my daughter is intolerant to more than gluten but she barely eats anything now so I can't even do an elimination diet or all she'd get is water and breastmilk and that has to stop soon as I am going back to work. She is almost a year and while she was doing really well for 6-7 weeks, things have gotten worse. Coincidentally she is worse since I decided to go gluten free as well due to the breastfeeding. Is it a coincidence or what is happening. sorry this doesn't really fit in with the original post but I had to ask.
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