• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Mom2_2girls

  • Rank
    New Community Member
  1. Help With Results...

    That was my feeling Mushroom. She has been living in a gluten-free house for 5 months now, but I did give her one serving of gluten a day, plus she had gluten when we went out. I still worried it was not enough though although the GI doctor said it just had to be a serving the size of her palm. My older daugther was originally tested by a naturopath at 2.5 so perhaps I will try that and see what those tests say (different than what they do at the hospital). I will make sure to really gluten her up for 6 weeks?!
  2. Hello, My daughter is 2.5 and her big sister has Celiac (the only person we know of in our family). She has had a couple of weird things happen. 1./ rectal prolapse several times over the last 8 months. 2./ Constipation since birth despite being breastfed exclusively for 8 months, and she still nurses. 3./ She has had ear pain, and loss of balance (were she just falls over). Going to ENT next week. We were referred to Toronto's Sick Kids Hospital. They tested her for celiac and cystic fibrosis. Her results have come back negative (see below). I just feel like something isn't right. She has a HUGE HUGE belly but is just normal everywhere else - not skinny in the limbs. She seems really gassy too in comparison to my other daughter. She often gets dark circles. Anyways that is just a bit of background. Wondering if anyone might have some thoughts on her results, as I know they can me inaccurate for a 2 year old. FROM THE NURSE. "The sweat chloride is negative (<10). Her vitamin D is low (68). She should take daily supplementation consisting of 600 IU daily. Her TTG is negative; IgG 1 and IgA 0. I hope this helps. Her hemoglogin is ok, iron slightly low, 6, but her MCV is 84, so nothing to do right now about that. Her ESR is elevated at 21 (1-10), however, it does not indicate anything specific. It is an acute phase reactant, which means if she was getting over something, coming down with something, it would be reflective." So what do we do going forward? Test her every year? I found it really hard to get her gluten into her everyday since we now have a gluten-free house. I wish they would do the gene test so we at least know if she is a carrier. Thanks!
  3. What a wonderful post! I have also noticed a HUGE difference in how my 5 year old daughter is feeling emotionally. Previously she would have horrible tantrums and become totally unreasonable and we just couldn't understand why. It is amazing how since being gluten-free all that unreasonableness and irritability are gone. Hope you see some good weigh tgain over the next few months!
  4. Thanks for the reply. Our whole house is gluten-free. My mom's is not nor is the daycare providers since no one has celiac in those families. I know my mom is super vigilant and the daycare provider is careful too, but maybe my daughter is just that sensitive... I think we will put her on a whole foods diet (we already mostly eat whole foods but could step it up) and not let her eat anything from other peoples homes for a while.
  5. Thanks so much for the replies. We mostly eat a whole foods diet and don't eat out at all (except for that one smoothie). I feel like we are so careful. I think maybe we need to go to basically 100% whole foods though. I was reading about people having to replace pots and pans etc. I wonder if she could be sensitive to things cooked at the home daycare and at my moms. I really didn't think it would be this hard. I had a student with celiac and she was not like this. Once she accidentally ate non-gluten pizza and said she just got a bit of a tummy ache. I suppose at least this way we know she is getting hidden gluten instead of being unaware.
  6. My daughter has been gluten-free after being diagnosed with Celiac in early October. Not sure if it matters but her Marsh score was 3B. Anyways after a HORRIBLE first month with really bad withdrawal symptoms we have seen big improvements. However it seems like she is really sensitive to CC. Our whole home is not gluten-free and we got rid of a lot of things (like the toaster etc). She goes to my mom's once a week for dinner and my mom is super vigilant. At daycare (2 times a week) she only has rice and her own snacks. She keeps getting tummy aches and having gluten-tantrums. It is so obvious when she is glutened. The thing is I feel that we are SO careful yet this still happens at least once a week. Does anyone have suggestions? Is there a super safe diet we should be following for a while? Any input would be much appreciated.
  7. Not sure if you are close to Toronto but could you get your doctor to refer you to the GI clinic at Sick Kids? I wish we had done that first... the wait list was pretty long. It might be worth it to try and get in there. If you do the full panel that is great but if you are going to choose between TTG and EMA go with TTG (if you think you will end up at Sick Kids). My daughter had to be retested because even though her EMA was strongly positive, at Sick Kids they use TTG. FYI testing is free at Sick Kids but they don't do a full panel. Another frustrating thing... my daughter got her blood test in May but it wasn't until October that she had her endoscopy and we could go gluten-free. My other daughter is currently going to get tested and I have been giving her one small serving of gluten a day. The size of HER palm is enough apparently.. according to Sick Kids. I am SO glad that we went through all the emotional and )for my daughter) physical pain to get a proper diagnosis. It was a hard 6 months but was worth it. Now we will have follow ups at Sick Kids and had access to their dietician. Good luck!
  8. My daughter was also a beast. Constant meltdowns... waking up kicking and crying at night... so grouchy and kept saying awful things about herself (out of character)... also had constant tummy aches. This lasted an entire month and finally started improving. Hang in there!
  9. I am in agreement with this. We actually had our daughter go gluten-free when she was 3 after a naturopath said she had a gluten/ wheat intolerance. Not thinking it could be celiac we eliminated 95% of the gluten in her diet and saw no improvement, so we figured the ND was wrong. If only we had had more info and known she couldn't have ANY gluten at all to see any improvements.
  10. My daughter was 5 when she went gluten-free after being diagnosed. First month: It was HORRIBLE! She was SO moody. She was having huge tantrums all the time, her tummy was constantly hurting her too. I was so frustrated and upset. It was very difficult. After that: All her sensory issues have been getting less and less apparent. Previously she had severe tactile defensiveness and it was SO hard to find anything for her to wear. Everything bugged her. That is almost gone now after 2.5 months gluten-free free. She is SO much less moody then before she was gluten-free. Previously she would have meltdowns for no apparent reason and act SO agitated. Now it is SO clear when she has been glutened because the old behaviours come back. She seems happier overall. We are still struggling and even though our house is totally gluten-free she must be very sensitive because anytime she eats anywhere else she gets glutened.
  11. My daughter is 5 and has been diagnosed with Celiac recently. She has been gluten-free for 2.5 months. The first month was so horrible. She was having meltdowns everyday and her behaviour was just out of control. She likes the gluten-free diet and had no problems cutting it out. Since November she has been getting better and better and her moods have really improved. Before she was diagnosed she had a lot of weird meltdowns and behaviour that didn't make sense. Now whenever she gets agitated she will almost always complain of a stomachache, so we have to assume she has been glutened. Our home is 100% gluten-free. She goes to a home daycare twice a week and the woman is really careful and only feeds her rice with basil, raisins etc (no "seasoning" etc). I supply snacks and her own peanut butter etc. I think she might be getting glutened at daycare. As well my mom watches her one night a week and she seems to get glutened everytime she goes there. My mom is very careful and very well read but her home is not gluten-free. I just feel so frustrated. We are so careful... but I am starting to wonder if my daughter is extra sensitive. She once had a smoothie from Tim Hortons and got a really bad stomachache right after. Could a crumb of gotten in and set her off? Her blood test results were very high apparently and her Marsh score was a 3B. Just sharing incase this gives some background. Has anyone been through something similar? Any suggestions? Do I just stick with making her extremely safe foods for a month... 2 months? On top of all this my 2 year old has been having a rectal prolapse and is on laxatives for months until her rectum can heal. She is also getting the celiac blood test in a couple weeks. Just feeling really overwhelmed. Thanks for the support.
  12. My 5 year old daughter had an endoscopy just under a month ago (which confirmed celiac). That day we went gluten-free. The first week she was super cranky and we thought maybe it was withdrawal but looked forward to her feeling better... especially her moods. It feels like things have only gotten worse since going gluten-free. How is that possible? Last night for example she woke up kicking and screaming. Turned out her tummy was hurting so badly, for a while I started worrying it was her appendix. It seems like in the last 2 weeks she has been getting "stingy" tummy aches. At first I thought it could be from milk but I am not so sure. Yesterday she had no milk. She DID have a chili from a restaurant, that was supposed to be gluten free but I suppose there is no guarantee a crump didn't get in there. Is it possible that after being gluten-free for such a short time her reactions could get worse so quickly? I am not even convinced that she has been 100% gluten-free. We did a big clean out and have made our house gluten-free. Got a new toaster... cleaned all the cupboards etc. However I have found a few things that we missed. I am feeling really overwhelmed. I thought it would be a lot easier and that we wouldn't be just a couple weeks in and be having these kinds of issues. I would love and thoughts or feedback. Did anyone go through something similar? Many Thanks.
  13. THis is exactly the kind of information I was interested in. Thank you so much for your help. I am so thankful to have this board as a resource.
  14. My daughter had her scope yesterday so we are one day in to being gluten-free. Right now she has had intermiten stomach aches etc. She gets very agitated too. I am wondering how long after going gluten-free is it before you started really being able to notice if you ate something with gluten. I have read about some people being sensitive to Chex (even though they are supposedly gluten-free), or to gluten-free oats. I guess I am wondering when we will be able to see if those are an issue for my daughter. Thanks!
  15. Thanks so much for the replies! All this waiting is driving me nuts!! It has been over 4 months since her first positive blood test. At least now we can go gluten-free.