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About torontomom

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  1. Also re. symptoms, Sofie gets canker sores on her gums or tongue that really bother her. She also has very obvious ridges in her nails.
  2. Thank you greenbeanie! "Have a cup of tea and nice hot bath!" Hahaha! Thank you for the laugh. I am also a quiet and non-confrontational person. I know I need to find someone to take this seriously, but it's just sort of daunting right now to think of approaching her doctor again. Perhaps I won't even bother and I'll switch straight away if I can find someone good. Parents obviously don't ALWAYS know better than doctors when it comes to their kids' health, but I think we can just sense when an issue is a serious one. My son has Aspergers (he is 8) and he had a variety of delays when he was a baby/toddler with low muscle tone, fine/gross motor skills, speech, had sensory issues (with tastes, textures, smells, movement, sound), and was an extraordinarily picky eater. He was my first and I didn't have anyone to compare him to so it took me a while to understand that his development was not normal. But when I did, the doctor was happy to refer him to speech therapy, but really did not see any other problems. I had brought in a list of things I was concerned about (written down so I wouldn't forget) and the doctor said that making a list was "kind of anal". He also assured me that "he clearly doesn't have autism!" simply because my son made eye contact and pointed at things. Argh.
  3. Thanks for this post! I am having trouble with my daughter's doctor. She doesn't think ordering the blood tests or referring to a pediatric GI or allergist is necessary. For more info. on our situation, you can read my discussion on the board (just posted it a few hours ago), but in a nutshell: My daughter is 6 and she has abdominal pain, occasionally with vomiting (no other signs of a virus), bloating, gas, itchy skin, a red bumpy rash that comes and goes (especially on cheeks), weak dental enamel, ridged nails, canker sores, and bad body odour and bad breath (poor kid!) I really believe that food is the culprit, but we've never been able to see a direct relationship between something she's eaten and her symptoms. I have an autoimmune disease myself (one similar to lupus called UCTD and also psoriatic arthritis) and my symptoms are similar to what I hear about in celiac disease too: neuropathy, joint and muscle pain, fatigue, costochondritis, Raynaud's, tendonitis, diarrhea, GERD, bloating, migraines, etc. I have a high +ANA (1:640 speckled and homogenous). I had the celiac bloodwork run (not sure which specific tests though) and it was negative. I saw that you have keratosis pilaris listed in your list of symptoms. Is that related to celiac disease? I have that and so do 2 of my kids. But what I really noticed were your comments about dental enamel. My daughter has a whole mouthful of cavities (I think 12) by the time she was 3, plus 2 root canals and crowns. The dentist couldn't tell us why because my other 2 children have never had a cavity and they have a very similar diet and oral hygiene. My daughter actually always liked brushing her teeth and she drank water rather than milk and juice nearly all of the time. Anyway, our family doctor doesn't think a GI/allergy referral is necessary. I was debating trying a gluten and dairy free diet anyway for a set period of time to see whether things improve (for me as well as for my 6 year old).
  4. Thank you! We live in Canada so our medical system is a bit different. All primary dr. and specialist appointments, as well as testing is covered by government health insurance. I would need a referral to a GI doctor and allergist. I agree that I need to find her a new doctor. She currently sees the same family doctor that all of us have. I'm going to ask friends and other parents at school to see if anyone has a ped. they really like who is taking new patients. I also went through a long and frustrating ordeal with this doctor trying to get my own autoimmune disease diagnosed. Maybe it's time that we all move on.
  5. Hello! I've been browsing your forum and I've found a lot of the other discussions very helpful. My situation is that I have a 6 year old daughter who I think has food allergies or intolerances, but her doctor isn't concerned with the symptoms she has and doesn't want to refer us for further testing. I specifically wonder about celiac disease, but also about food allergies. I'll try to keep this brief! The symptoms she has that worry me are frequent abdominal pain, bloating, frequent very smelly gas, weak tooth enamel, rashes and general itchy skin, and bad body odour. She also sometimes throws up when she has tummy aches, but her bowel movements are pretty normal. The pain is in the centre of her stomach just above the belly button and sometimes to the left of that area. Just today she told me at breakfast time that she had a tummy ache, but didn't seem upset by it so I sent her to school as normal. When I picked her up in the afternoon she was crouched on the ground crying and her teacher said that she'd complained of a tummy ache after lunch, then it had seemed to go away, but got worse late in the afternoon just before the end of school. I don't think she was constipated (which is what our doctor always suggests when I ask about stomach pain, even though Sofie has BMs every day). She often has a rounded tummy. Sometimes the tummy aches are accompanied by vomiting, but not very often. She did have an episode like that last weekend. We've never been able to tie it to a specific food that she has eaten. When I took Sofie to the doctor about pain + vomiting, she said it was likely a virus, but none of the rest of us got sick (and stomach flu almost always ends up getting passed around our family when we do get it). Sofie has had a lot of dental work, including several root canals and crowns and many cavities. I have 2 other children (one older, one younger) and neither has had any dental problems. I actually started wondering about celiac when I was trying to figure out why her tooth enamel was so weak. I looked it up online and one of the first things that came up was celiac disease. She sometimes complains about itchy skin and used to get bouts of hives for no apparent reason though that hasn't happened much in the last year. She gets a red, bumpy rash on her cheeks sometimes which the doctor thought was eczema, but I'm not convinced because my 8 year old has eczema all over his legs and it looks very different. What else was there? Oh, the body odour. Last year Sofie suddenly started to smell like a teenager. She was only 5 though. It is mostly under her arms and it's a really strong smell. I eventually had to start using a natural deodorant, which does help, but isn't she just too young for this? Her doctor said it's normal in a minority of kids. The only thing she was concerned about was premature puberty, but she has no other signs of that. She also has bad breath quite a lot despite always brushing and flossing (we're very careful about that because of her dental problems). What Sofie DOESN'T have is any problems with growth (height and weight are both 85th percentile right now), only occasionally gets diarrhea, doesn't seem constipated... I have an autoimmune disease myself (I have something similar to lupus called UCTD and also Psoriatic Arthritis, which are both autoimmune). We have Hashimoto's and type 1 diabetes in our family too, but no one with celiac. I had the blood test for celiac run because many of my AI disease symptoms could be celiac symptoms as well: neuropathy, muscle and joint pain, GERD, diarrhea, migraines, other bowel issues (like fissures), fatigue, low ferritin, etc. But the test was negative. Sorry this is so long! What I really wanted to ask was: Do you think I should push harder for a GI referral and an allergist referral? Could my daughter's symptoms be consistent with celiac? I know that there are other allergies/intolerances that could account for them too. I was interested in doing a trial of an anti-inflammatory diet for myself to see if it improved my own disease symptoms. I would remove dairy, gluten, and refined sugar. I thought maybe the whole family would do it together as Sofie has these issues and my 8 year old has eczema and frequent ear infections which I've heard may improve on a gluten and dairy free diet. He also has Asperger's and I know that it's quite common for parents to say that some of the issues that come along with that improve when gluten and casein are removed. My husband and youngest child have no medical issues, but they're willing to come along for the ride because it would be easier for the rest of us. I do know that testing wouldn't be accurate if gluten was already out of our diets, so I'm just wondering whether to push for testing first. Thanks so much for any feedback or thoughts! Torontomom
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