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About Birdie19

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  1. The answer is yes....it can! I didn't believe it 9 months ago, but it's the truth. It totally happened to us. Our daughter was different immediately. I am thinking out kiddo had the neurological form. Which is why for us it was so immediate. I know it seems impossible but really it, it's totally possible that it can be such a change. I would say expect good days and bad days. But your new normal will be awesome!
  2. Good Lord, what is wrong with these people?! Out of curosity how old is your son? I am guessing what the doctor is hinting at is a conversion disorder. So I would be very clear about what exactly the complaints are....right them down, for example, on Feb 2 at 9am: stated "left knee hurt, pain was a 8 on a scale of one to ten, was wincing, holding the knee and unwilling to move, regardless of the excitement to play with his friends that were over". You need to include WHERE it hurts, HOW MUCH it hurts, and the psychosocial pieces surrounding it. I am sure they are thinking this is a get out of school free card. If you can track this stuff and show it happens at home and else where when it is really something he wants to do that will help. Maybe what you need to do is persue the celiac diagnosis pathway and then just to get the school to calm down do a psych eval with an independent group. If they deem him not needing help them he will be in the clear with the school. As for the insurance piece. The doctor knows NOTHING about how they will reimburse. There are 1000s of types of insurance, he/she is hardly an expert on it. Do NOT listen to them. They are trying to discourage you from doing this. My daughter is a celiac, we went to a GI and he was so rude to me. He bascially said my child didn't have the disease (even with high labs and a family history) and I pushed to hard to get an appt because their are children who are sicker and he was pissed that they put me on the calendar. Well you still accepted the appt so I deserve to be treated that way? You are the parent, NO ONE, I mean NO ONE knows your child better than you. It doesn't matter what these professionals have read in books or have experienced with other patient's you are the expert on your child's care. Keep persuing it, you are on the right track I bet. If you have done the labs, trial a gluten-free diet this weekend. Why wait? Would you not do the diet if the labs are normal? Just give it a try. It's a diet, it can all be undone. Good Luck, keep updating us.
  3. From a mother who has been in your shoes (recently too, May is when our daughter was diagnosed). My daughter had high TTGA and IGG, but not high enough for the jerk of an GI doctor we saw. He wanted me to wait a couple years to see if damage appeared in the intestines. I beat myself up over going gluten free for months. My daughter did have distention and bloating but the biggest change I have since going gluten-free was in her behavior. My daughter's body was the opposite of your child. she was totally and completely activated, ALL THE TIME! She was bouncing off the walls to which most of our friends wouldn't be around her, my husband and I refused to ask others to watch her because we felt so bad that her behavior was insane! SO MUCH ENERGY! We did biopsy her and it was negative. Looking back I wish I would not have done the biopsy. They are invasive, expensive and unnecessary. As someone said to me....."it's a diet, try it, if it doesn't work you can always go back". I completely understand wanting to know for sure if your child has celiac. However, looking back I would not do the biopsy again. It's completely unnecessary. What you are talking about is a diet, that's it (albeit an involved diet) but it's just a diet. You can do it and undo it if you are not happy with the results. After we changed our diet, her behavior made a 3 fold improvement, she can focus, she can sit still for more than 10 minutes, etc. The symptoms you describe with lethargy and all, that is my husband. He thinks he is not a celiac however since our family went gluten-free in May, he has tested several times eating wheat and he comes home from work and sleeps for 4 hours. He can't move, he is totally and completely exhausted. He did not have high labs, his were normal and he opted not to do the scope and he is still completely intolerant if not full blown celiac. So I guess what I am getting at is, you can do all of these tests and still have no more answers than before you started the tests. The only way to know is to do the diet. Try it, keep a journal and see how it goes. That's my opinion!
  4. The pharmacy friend of the previous poster is correct. Sugar draws fluid into the bowels and breaks up constipation. Excess sugar can certainly cause diaherria and vomting. I wouldn't think it was a 'glutening' but more of a sugar issue. However to be safe I would contact the bakery to find out the ingredients. Best to cover all the bases.
  5. I am so frustrated I could scream!!!!!!!!! My daughter is exhibiting what our pediatrician referred to as hold over behaviors. Since she has been sick for so long now that her body feels better she exhibits behaviors of age 2 & 3 again. Like she is re-testing the efficacy. Our pediatrician said to expect this after she was finally diagnosed Celiac. I can't believe it's true but it is. My daughter has started to act like a 2 year old again. She gets out of her room 20 times at bed time and she screams in my face. Behaviors that were gone and are now back! I can't believe it! It's so hard. Has anyone else experienced this?
  6. Wow, what woes you have had....I am so sorry! A food journal is a fantastic idea! We started one and since a lot of our family indicators are behavior I am writing about all this too. Write what you can when you can. It has helped us a lot! It will take time to undo everything and heal the damage!
  7. I know this seems ridiculous but what wording do you use? I have been saying it will hurt her tummy but I feel like I have to have a better way of saying it.
  8. Seriously? They both don't eat gluten/wheat and they gave him pretzels? WOW. Weird, I wonder what went through their head. I am so disappointed to start over, on the upside I found a fantastic gluten-free bakery yesterday and went a little overboard, ok a lot overboard!!!!
  9. Daycare let my kid eat a donut yesterday. I haven't really explained to my child the reason we are eating different, I have been just trying to replace things in her diet to keep it normal. So yesterday when daycare put bowls on the table with donuts in them my daughter grabbed a bowl as she always had and she starting eating. It was 2 bites but we are back to square one. I am so disappointed. We were 2 weeks in....=( Should I explain it to my 3.5 year old? Or just keep replacing? How do you have this conversation?
  10. Yogurts are often ineffective anyway, they do not provide ENOUGH probiotic to be useful. You would have to give the child double the amount of yogurt you would normally give. I have been using Little Critters Brand Probiotic Chewable tablets for kids. Before gluten-free she had yeast infections for months on end, infact I don't remember her ever NOT having one. But using the probiotic they got much better and way less painful. So would be worth a shot. I apologize I don't know the allergen info about them.
  11. OMG, I am so delighted to hear that others are still dealing with abdominal distention. I thought I made a mistake, does she not need to be gluten-free? Her personality did a 180, so we have that as a confirmation. Probiotics is a good idea, I stopped all that once we started the diet because I wanted to see if her yeast infections stopped. And the infections stopped right away (by the way). But I should restart it to see if that will help, along with her vitamin.
  12. I totally hear you, I was so disappointed the other day when I went to my favorite grocery store and was reading labels of ALL our favorite foods. So few of them were actually ok to eat. I was there about 40 min before I felt so completely overwhelmed I left. Here's my suggestion....if you aren't wanting to make a list of things you buy that you like take pictures, use your smart phone, phone whatevet and take pics so you can reference it at the store. Takes the stress out of reading EVERY SINGLE LABEL! This is totally hard, my favorite restaurants everything .......but look at all the wonderful things you said about your son. He's a different kid, he loves to sing! I am so happy for you that your son has his personality back because he feels better. IT WILL TOTALLY GET EASIER!!!!!!!!! Good job for being so on top of it!
  13. Thank you, my husband had the blood work done and it was negative. They recommended he do the biopsy because of his family history and because our daughter labs were positive. We made the appt and he said I'd rather just go gluten free than have the biposy, it's cheaper. So once I cancelled his appt he didn't do the diet. However it turns out that he has been gluten free since Sunday he just didn't tell me?! So apparently I was worrying for nothing. Whole family is now gluten free. Our daughter is still having distention though, so I am still a little concerned.
  14. Does anyone have any tips for helping my husband cope with becoming gluten free? A couple of weeks ago we started gluten-free for our daughter and the results have been amazing. I am also convinced my husband's EXTREME fatigue, bloating, gas, etc is caused by gluten. I have been pushing him to trial gluten free and he has been really reluctant saying I love my apple fritter, etc. Really the reality is he is LAZY! He doesn't want to think about these things when he by himself. When he is home he automatically gluten-free because the whole house is.....and he doesn't want to deal with asking when we are out. Causes anxiety or something for him. I offer to make him some of his favorite things like donuts and other treats but he just seems to be having a hard time coping. Bare in mind he grew up with a mom with Celiac for the past 20 years in a country (Ireland) that was not really well equipped with alternatives so he has a history of 'hating' the process and disease already. Any thoughts or ideas how I can help him past this I really appreciate it. I went gluten-free 2 weeks ago with my daughter, I feel fantastic, I have lost 10 lbs and I feel like I have more energy and I am more awake. I want him to get there....
  15. Ok, I am new to Celiac disease in our family (my husband's mother has it - 20 years). But to me it is new. Our 3.5 year old daughter is a normal happy child. Never a complainer, but she gets bloated after meals. Nothing that would seem crazy unusual but enough that we noticed and thought, that can't be right. But or BIGGEST symptom was her NAUGHTY behavior. I often describe her as a menace to society. She will get into anything she can and destroys everything. I rarely see her actually sit down and play with something. The best way I can describe it is she seemed to be jumping out of her skin. Like she wanted to go in every direction at once. Over the course of the last 2 years my husband and I couldn't figure it out. How is it possible that this sometimes very sweet child can be so insane? I don't get it! We tried everything, parenting books, EVERYTHING! We discussed every punishment we cracked down on everything to the point of complete desperation. 4 weeks ago she tiptoed out of her room when into my room climbed my dresser took down the bag of nail polish and proceeded to dump four bottles of nail polish on my hard wood floors. This isn't my kid! I just don't get it! How do I have this child? We are doing everything we can and she still doesn't behave. Finally 3 weeks ago my husband looked at me and said, I think we need to have her seen for the abdominal bloating. I think it's time to get her Celiac tested. We took her into the Dr and her TTGA and IGG were elevated and suggestive of celiac. Her biopsy was negative. We agonized over trying the celiac diet. Do we want to do this to our child if we aren't sure? We decided to trial the celiac diet. What's a few months of her life while she is young? Results The results were astonishing. With in a day her behavior drastically changed. She stopped behaving so badly, she started listening, she sits down and actually plays with a toy now instead of ping ponging all over the place. Our daycare has even noticed. She falls right asleep at naptime now. She doesn't toss and turn for an hour she falls right asleep. She doesn't massively overeat. She eats a little feels full and stops eating. She doesn't fight us at all. What we say goes. Confirmation Our confirmation has been they screwed up the diet at daycare this week. And we have noticed a marked difference in her behavior. Increase time to fall asleep, less ability to listen, etc. I can't give you any definitive answers about your particular case.....what I can say (and what was said to me) 1. It's just a diet....if it doesn't work what's the harm? 2. Is it truly necessary to do all of the medical work up, if the diet works? (medical work ups are expensive and if the diet works WHO CARES, what the doctor says?!) 3. What would give you more proof the diet? or the labs? I can't answer any of these questions for you, but I can guide you to ask them of yourself and them hopefully you can make your decision. I can also say, I have been there. And I have, less than 2 weeks ago. In my opinion: you already have the proof (he has the genes), why subject him to more testing. Just trial the diet, if it doesn't work then you can try something else. My guess is your hunch is right!
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