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  1. Hi,

    My ds also has "after" affects of the gluten. I don't know how much help I can be because she just cries and cries uncontrollably. She will be cranky and moody but not aggressive towards us or her brother. Just cranky, usually she just stomps off. We remind her gently that it is the gluten talking and to try to control her words a little better. When she does hit the wall and starts the crying binge, we just sit on the sofa and hold her and let her cry it out. The crying is usually the last stage of it and she usually does this at night and basically just cries herself to sleep. It is heartbreaking. Luckily she is getting older and a little more responsible at school so we have only hit that once so far this year.

    It is such a hard thing to deal with because even though you know it is the gluten, it doesn't make it any easier to deal with. Maybe if you have another adult at home to help you can trade off dealing with tantrums when they hit so each of you have a break. Good luck and I hope you dd is doing well.

  2. Hi Everyone!

    Thanks to everyone for all of your replies. I ended up keeping Michael home on Thursday and we are going to bake gingerbread men together at home. He decided to do it when his sister and two friends are with us on Wednesday since he thought that would be more fun. He is such a thoughtful little boy even when he is being left out. When I told him what the class was doing (I didn't want him to find out from someone else) he started to cry, I told him we were going to do the same at home but in a way he wouldn't get sick. He immediately started smiling and yelling hooray! I took in an official letter from the doctor and gave one to the office for his file and a copy to his teacher. Amazingly enough, that night she called saying that they usually decorate cookies for the holiday party but she is going to change the activity since Michael and the other little girl can't do it. She asked me to sign up for the cookies to bake at home and bring in for the party. That's no problem! I am going to call the other little girls mom and find out what egg substitute she uses so the little girl isn't left out.

    I made some of the suggestions about the craft instead of baking but it seemed like it went in one ear and out the other. I don't think she took me seriously, looks like the official letter from the dr changed her mind.

    Anyway, thanks to all of you for your help and kinds words. Sorry my first post was a little frantic, I was quite upset. This forum is wonderful and so are the people on it! Thanks again all!

  3. Hi Everyone,

    I have just read the recent thread about baking in school. Great advice and bravo to the little lady that stood up for herself and the mom who backed her!

    This is the first time I have had a potential problem with a teacher. So far we have had great luck and amazing teachers. My sons preschool teacher wants to bake gingerbread cookies with the kids on Tuesday after reading a book. She made three suggestions 1. Have my ds stay on the opposite side of the room while everyone else does the activity (yes she seriously said that) 2. Me pick him up early/just stay home 3. Me bring in gluten free baking things and flour to make the cookies

    I opted for number 3 but I have found out that the recipe calls for 6, yes 6 cups of flour! Can you say ouch to the pocket book!? Anyway, I have no problem with that but there is an afternoon class that comes in and does the same activities where there is no gluten issue. So basically they will bake with regular wheat flour in the room, which is also the problem with him just staying home and them using regular flour.

    My question is has anyone had this happen in preschool and if your child wasn't there did they get sick from particulate fall out that wasn't cleaned up properly? How did you handle it? Did you trust the teachers when they said they would clean the room or did you go in and help them clean? I have also been made to become aware that people in the school are not taking this seriously. Granted my daughter is diagnose celiac, ds however has a positive gene test and positive dietary response but since he was 2 when we tested we didn't get a positive on the biopsy so no dx by the doctor. She said, he obviously has a problem and there is no reason to keep him on gluten if taking him off solves the problem and we know he carries the gene.

    Also there are soy, egg, tree nut, peanut, strawberry, dairy and diabetes in the classroom besides my sons gluten intolerance. I am not sure why she is taking on the responsibility and liability of baking with all of this in the class anyway. She has made efforts to find a dairy nut and egg free recipe. Why is she willing to bring flour in the room, it's not even like it is some crumbs that can be cleaned off the table from snack, it's going to be flying in the air! Boy I am so frustrated and worried that I can't form a coherent thought, sorry this is so jumbled. As you can tell I could use some guidance! Any advice is welcome and thank you in advance.

  4. My heart goes out to you and Ellie. I hope you find your answers to help her feel better soon. Michael was not FTT but was very low on the weight gain charts. The doctors told me to up his calorie intake as much as possible, this is difficult with diet restrictions and picky eaters, both of which he has/is. I "hid" a lot of things in his regular food! Good luck and I will keep you both in my thoughts!

  5. Hi All,

    I just have to rant and rave about my daughter's first grade teacher! So I picked Katharine up at school yesterday and her teacher stopped me in the hall. They are reading a book about blueberry muffins and want to bake blueberry muffins at school. So I assumed they were going to ask me to bring in a blueberry muffin for Katharine which would be great that they let me know in advance. That wasn't it, they want me to bring in the ingredients and utensils and bowels to bake gluten free blueberry muffins for the whole class! I couldn't believe it. They thought it would be wonderful for Katharine to participate but also for the other students to be able to try Katharine's muffins! I was so elated! It will be a total pain to take everything into school to bake and clean off all the surfaces and stuff before the kids get down there but, wow, it will be so worth it just for Katharine to be able to have that experience.

    I baked the muffins this morning just to make sure it will work with the gluten-free flour and they were delicious. I took some into school so her teacher and student teacher could try them and they both emailed me that they were delicious and they wouldn't be able to tell they were gluten-free if I hadn't told them. They think the kids will love them. I can't wait! Anyway, I have shared so many concerns and questions here, I wanted to share a triumph as well!

    Happy Halloween to everyone! Stay safe and gluten-free! :)

  6. We just did a hay ride last weekend. Both kids seem to be fine however the hay was alfalfa not wheat. The farmer there told me that typically if they say "straw" it is wheat. He told me that straw is the bottom of the wheat. Just thought I would pass that along. All of the people we spoke with were so nice about our questions. The first two didn't know so the found the man who owned and operated the farm. He answered all of our questions and the kids have been fine. Good luck and happy hay rides!

  7. For those of you who live and/or use Meijer as a supermarket, I found a link on their website which lists all the Meijer Brand products which are gluten-free along with their gluten-free specialty items. Thought I would pass along the link.


    Hope everyone is happy and healthy and had good start to the school year!

  8. My DS had the same problems as your little one last year. He had 7-9 bm's per day, all green or clay colored. Very irritable, rash on the bottom and food coming out comletely undigested dark purple circles anda terribly distended belly. We did the gene test when his sister was diagnosed with celiac and it was positive. His blood tests were neg but GI was concerned about food, bm frequency and consistency, and constant complaints of stomach aches. After many non invasive tests that all came back normal we had to decide if we wanted to do a scope. After a lot of discussion my dh and I decided to go ahead with the scope. The GI said his duodenum looked suspicious but once it came back from the lab it turned out to be negative. I decided to take him gluten free since everything else checked out normal. Everything stopped within a few days and completely resolved within a couple of weeks. We kept a food diary and did a couple of gluten challenges and recorded all the symptoms when they came flooding back. We have a gluten free house now and everyone is happy and having normal bm's. (Yes our house revolves around everyone's bowel movements!) We have decided to keep DS gluten free until he is old enough to tell us how he is feeling and let it be his decision if he wants to challenge it for a medical diagnosis.

    This is our story which seems similar to yours. I wish you luck and hope you find answers for your little one whichever route you take.

  9. I found that we have been getting glutened from Kraft shredded cheese. It is the only thing that my daughter ate regularly to cause her numbers to stay elevated. Anyway the reason I am telling you this is that when I talked to Kraft they stated as always that the clearly marked gluten on their packages but when I pushed further about cc they would not garuntee that anything they make is gluten-free. They just said that the mark the packages. Although I have talked to them a few different times and the answer is always just a little different. However this last time they wouldn't committ to anything, when I took her off of Kraft cheese, her numbers, which we have been struggling with for awhile now, drop 30 points in one month. Good luck and I hope you find some answers.

  10. Hi everyone,

    Just wanted to share our joy. Katharine had her GI checkup in June. Her Ttg's came back at 85. I was amazed as I thought we were doing great. But obviously not. She hadn't had her rash or weird bm's or anything but they were up none the less. So here we go again on the hunt for hidden gluten.

    I made 2 changes as far as food goes as everything else was gluten free printed on the packages or whole foods that we were using. I stopped using Kraft cheese as they won't garuntee gluten free, they just say the mark it clearly on the label. Now I use wal mart singles and walmart brick cheese which state they are gluten free on the package. And we no longer use Nestle tollhouse chocolate chips. We use good for life. With those 2 changes and having our house 100% gluten-free her numbers went from 85 to 56 in about 6 weeks! I am not sure which one did the trick, but it did. Hooray! I know we still have a ways to go to get under 20 but I am so happy we have made a break through! We are having the tests run again in a couple of months that way if they go above 56 we will know something is happening at school. First grade this year and a whole new ball game with the cafeteria, should be fun...

    Wish us luck!

    Thanks for reading and sharing our success with me!

  11. Wow, it's like reading about my ds all over again. Michael was having green poop 8 times per day sometimes with completely undigested food in it sometimes not. Sometimes hard sometimes a mess but ALWAYS green or yellow. I heard and was told the same as your first response. Michael like your son was tested very early since Katharine is positive. He was tested at 3 yo and came back negative. He was volatile, cried at everything, dark circles under his eyes, appetite way down, hurting tummy complaints all the time, distended tummy and between 6-9 bms per day. He was a mess. After the biopsy I took him off gluten even before the tests came back. When they were negative I was floored. I left him gluten-free and EVERYTHING went away and has never returned unless contaminated. He gained weight too. He is still a picky eater but now at least he actually eats a plateful. I did 2 small gluten challenges on him as I kept a food journal for about 2 months. Both times all of the symptoms came flooding back. Our GI said, well the tests were negative but if the diet is taking care of everything then thats what you need to do. BTW we had done a series of tests to make sure there were no other problems with his GI tract as well during the diagnostic period so we were sure there were no other problems or causes. Even though we did that I was fairly positive it was the Gluten from the start.

    I hope this helps and if taking him gluten-free stops everything, go with it. Trust your mommy gut, we are rarely wrong about our little ones! :)

  12. I also love the Tom Sawyer flour. I use it for EVERYTHING and everyone in my family loves it as well. Most of the time when friends come over and eat baked goods they say... "this is gluten free, you can't even tell" I am able to recreate everything I made prediagnosis so the kids miss out on nothing. It turns out beautiful cookies and cakes. My extended family prefers it to gluten cake especially the mixes. And as far as coating things it works great too. I haven't used it as a thickening agent, I have always used cornstarch with a little water for that purpose so I can't say anything there.

    It is wonderful stuff and I am not sure what I would do without it. They ship quickly and while I agree with the last post, it is pricey it is DEFINITELY worth the money. I can't say enough good things about it. I am actually about to orer my next batch now!

  13. Hi All,

    Would living in a town where there is a large scale factory be a problem? For instance, would gluten go in the air and make Katharine sick?

    An update... I spoke with the EQA which is the Michigan branch of the EPA. They have told me that through unannounced inspections, the factory exceeds EPA standards of .1 lb of particulate per 1000 lbs of exhausted air. That is just particulate which could be flour but may be other things. They use a recirculated system that pumps the air and particulates from the factory into a baghouse. In this facility all particulates picked up in the air in the factory are bagged and shipped out. Any thoughts would be appreciated.

  14. The journal idea is key. If you are concerned about glutenings, keep a food journal. Write down what he eats, when, and his bowel movements. After a couple of weeks you will begin to see a trend. I used this to find gluten being the problem with my son. The dr. loved it! I also used the technique to narrow down that he had a dairy and soy allergy when he was an infant and I was breast feeding. It is a great tool. I just kept a small spiral notebook in the kitchen and at each meal or snack wrote it down. It really isn't as difficult or time consuming as it might sound! Good luck!

  15. My son's bloodwk and biopsy both came back negative. He had undigested food, rainbow of colors for stool, temper tantrums, mood swings, tummy aches and the list goes on. After all the tests were done, the GI gave us an antispasmadic med to stop the tummy aches. I decided at that point (she had told me that we had run all the tests and to see if this helps, we were at an ending point, he was healthy in all other ways) to put him on a gluten-free diet as my dd was already on one and he was mostly gluten-free anyway. When I did this I kept a detailed journal for 1 month. I wrote down what he ate and drank, his moods, his BM's, and his sleep patterns. During this time, all of the problems vanished, when I challenged him with gluten on two separate occaisions, they all came back. We had a follow up visit with his GI, I brought the journal with me. She said, if it works for you then do it. If it is making him feel better then that is your answer, we have done all the tests and there are no "medical reasons for it" but if it is working go for it. She said that if we wanted to revisit the idea of another round of tests to put a positive dx on it to contact her anytime or if we had any questions.

    This is what worked for us, although as I said, we had already ruled out everything else. I do reccomend the food journal though, it makes it very easy to see trends or patterns that emerge without having to keep track of it in your mind.

    Good luck!

  16. I have read that the protein in oats, avenin, is molecularly similar to gluten, and that very sensitive celiacs react to it as though it were gluten.

    I'm so sorry you and your kids had a bad time with it. You might try using quinoa flakes instead of oatmeal in your recipes.

    Also, you might wait for a year or so, and then try oats again and see what happens.

    Any chance it could have been a reaction to dairy instead of to the oats?

    Thanks for the reply! We drink milk everyday with no problems. Katharine was lactose intolerant at first but she is fine now. I didn't know about the protein! Thanks again!

  17. Our local store stocked Bob's Red Mill Gluten Free Oats. My kids were thrilled as they both loved oatmeal and oatmeal cookies. We tried it and it didn't go well. Within 1 hour Katharine had a terrible rash on her bottom and a stomach ache. Michael's tummy hurt and he had a rash as well. Both of their BM's were almost white the next day. The next day Katharine had a hard time at school and at gymnastics. She couldn't concetrate or sit still or in gymnastics, stay on task. The following day Michael was crying and clinging to me not to drop him off at school. Michael has been demanding, cranky, and neither has been eating well. Katharine is now ok and back to her normal self, however Michael is still having issues. His BMs still have the undigested food and he is still extremely irritable. It will be one week tomorrow.

    Anyone else experience this? It does say on the package that some Celiacs can't tolerate oats. I had thought it was a CC issue and that oats are suppose to be ok if they are pure oats, tested and gluten-free. Any input would be great. TIA

  18. We had a great dr appt. I showed the GI the food diary I had kept and told her that all of Michael's ailments had dissapeared on a gluten-free diet. She said and I quote " hey if it's working for you, stick with it!" She said there was no medical reason for him to be gluten-free since the bw and biopsy were both negative however if he is responding to it, it is obviously the answer. She also said that she had read a new article earlier that day in a medical journal which stated in a small capsule study they found evidence of celiac in some people in parts of the small intestine that it wouldn't normally affect so are not usually biopsied. She was VERY supportive of our decision to keep him gluten free and was VERY happy he didn't need to take the antispasmadic meds as the stomach ache complaints have stopped. She said there is no reason to come back unless things change or down the line we want to revisit the idea of testing. Katharine is due for her one year check up next month. Thanks for reading and for all the advice.

  19. I went on the Candida diet when I was first diagnosed with Fibromyalgia hoping it was actually a full body yeast infection. (It wasn't) On this diet you can't eat anything that feeds yeast. Basically I was eating meat and veggies, no fruits with some spices. I went through absolutely terrible withdrawals. I couldn't figure out how this was suppose to make me feel better. It was terrible but it went away in about a week. I have been thinking about going gluten-free with my kids as I did feel better and there have been studies about it helping FM patients, however I am a little hesitant just because of the whole withdrawal thing. Good luck and I hope he he feels better soon.