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LFitts

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About LFitts

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  1. My daughter went to Camp Weakaneatit in June and had a blast. And it was such a relief to not worry about what she was eating all week (for both of us). I highly recommend this camp or any that you can make it to - we drove from Virginia to Georgia and it looks like this will be an annual trip!

     

    My daughter wasn't ready for camp this year, but we are talking it up for next year. She wants her sister to come, so I'm glad that they take siblings. Did she love it? What were the highlights?


  2. I know that there are lots of great ideas on the other links, but here are a few from our house. My daughter loves some of the GoPicnic gluten free lunches -- they come in little boxes about 350 calories, mostly organic / preservative free, really healthy options. Of course her faves are the ones that are more junk-foody. The one called Turkey Stick Crunch is her favorite. It comes with a turkey jerky stick, bbq popchips, a fruit leather strip, a seed & nut mix, and a small chocolate. They're high-priced, so we just keep them on hand for food emergencies. I leave one in my office, one in the van, and some in the house, but they're not for everyday.

     

    For every day lunches, we do ham & cheese on toothpicks (rolled up), a couple of pieces of fruit, some carrots, a yogurt, and a drink. Sometimes a bag of chips. My daughter never has liked bread, so she usually passes on the gluten free breads, but occasionally she wants to take a grilled nutella sandwich. Sounds strange, but it's delicious. Carrot sticks, celery sticks, and anything else that can be chopped small and arranged cutely in a lunch box are great. I overpack her lunch because she's always starving after school and I want her to have some options left to nibble on before we get home.


  3. I feel like we keep getting different information on Red Robin. Maybe it depends on which restaurant? I haven't dared yet..

    I'm sure it varies from location to location. I've walked out of restaurants when I felt that they wouldn't be able to handle the food to my satisfaction. We went in at an off-peak time and when the host asked if he could help us, I told him that I wasn't sure and that I had some questions about their gluten free menu and how they handle gluten free food. He pulled out the menu, went through the procedures, told me that the bun was pre-made and pre-wrapped in plastic and that they open them as needed. I don't know that they would have taken the time or paid such close attention if it was noon on Saturday or some other busy time.


  4. Our whole family has been traveling for the last week, and we brought most of the food with us and prepared more on the road. Even so, we found three occasions where we risked dining out, and they all worked out okay. It's the little things that get you all excited after living such a restricted lifestyle, but lemme tell you what we found.

     

    1) A non-chain pizza place - VIP Pizza - at the Hammerhead Marina - Grand Lakes area of Oklahoma. Went in for the restroom, glanced at the menu, nothing gluten free, so I asked the manager if they had any gluten-free options. He told me that his friend has celiac and helped him develop a procedure and that they do a totally safe gluten free pizza that has never made his friend sick. I was so shocked! We came back that evening -- all 16 of us -- and at the pizza. Success! The pizza was wonderful and so were the staff members. I nearly cried I was so happy.

     

    2) Red Robin cheeseburger and fries. Normal have kid food for a change. Love that they have an "allergen" fryer that never gets used except upon request for gluten free or whatever allergen. They have great procedures in place and my daughter has maybe never enjoyed a burger and fries that much before.  We live in a very rural area, so this was exciting for us, lol.

     

    3) Chick-fil-a -- Can't say enough great things about the service, attention to detail, lengths they went to to reassure us that they would handle everything properly. Daughter got a regular grilled nugget kids meal with fruit and waffle fries.

     

    I know that all of these are "junk food", but it's so nice to have some options! I've been hesitant to try restaurants, but our experiences over the last week have been wonderful. Just wanted to share!


  5.  
    Okay, well, the visit with the doctor was okay, but I didn't feel like I could speak freely in front of my daughter, so now I'm waiting on a call back. The good, no GREAT news is that now at 6 months gluten free, all her serology results are back in the normal range!! Her TTG was ridiculously high in December, and now it's 3!! that's right, three! Whew, I'm glad all of this gluten-free living is working. I was so afraid of bad results.
     
    I signed up for a webinar (I'll try to paste it below) on supporting kids living with chronic food allergies. I know it's not a food allergy, but I hope to glean something good from it. Meanwhile, we are researching child psychologists and trying to get recommendations in the region. We need to find somebody soon that we can start meeting with. At the very least, we need help with communication.
     
    cleardot.gif
      1x1.gifembed.jpg   Supporting Children, Adolescents, and Parents in the Daily Management of Food Allergies   button_joinWebinar.gif   Join us on Wednesday, Aug 14, 2013 1:00 PM - 2:00 PM EDT   Dear Lacey,   Thank you for registering for:   Supporting Children, Adolescents, and Parents in the Daily Management of Food Allergies
    Wednesday, Aug 14, 2013 1:00 PM - 2:00 PM EDT   1.  Click here to join:   https://www2.gotomeeting.com/join/159466530/106698690     This link should not be shared with others; it is unique to you.   2.  You will be connected to audio using your computer's microphone and speakers (VoIP). A headset is recommended.     Or, you may select Use Telephone after joining the Webinar.     Toll: +1 (702) 489-0003         Access Code: 943-887-085     Audio PIN: Shown after joining the Webinar       Webinar ID: 159-466-530   Please send your questions, comments and feedback to: mspigler@foodallergy.org

    This webinar made possible thanks to a generous grant from Lineage Therapeutics.   System Requirements
    PC-based attendees
    Required: Windows® 7, Vista, XP or 2003 Server   Mac®-based attendees
    Required: Mac OS® X 10.6 or newer   Mobile attendees
    Required: iPhone®, iPad®, Android™ phone or Android tablet     Read our Audio Checklist for tips on using your computer's microphone and speakers with GoToWebinar.   Add to your Outlook calendar    

  6. I have a 2.5 year old daughter who has been "high needs" since birth. Early on we discovered she was allergic to dairy and eliminated that from her and my diet (breastfeed, still breastfeeding) Except for a few phases in her life, she usually seems unhappy more often than not. This currently manifests itself in whining, tantrums, extreme clinginess among other things. She also has always been underweight, has severe tooth decay, intermittent mysterious rashes, and sleeps TERRIBLY (at most 2 hours at a time at night, all night) she also constantly wants to nurse. Lately all of this has gotten even worse, and I am starting to get burned out from being her mother. I often feel like I have nothing more to give her, and nothing makes her feel better, or happier. I finally brought her to a recommended naturopathic doctor and he suggested going gluten free for 4 weeks. Does this seem like a reasonable effort to you folks who have gluten intolerant children?

    Since our visit to the doctor we have been Gluten-free for 1 week. It seemed like two of those days were slightly better: improved mood and sleeping. However, today I felt so discouraged as it seemed any progress I had been seeing went out the window: An entire day of whining and haven't been able to put her down without a total meltdown. So frustrated. Any help? This is my last ditch effort.

     

     

    I have been there and know what you mean. Some days (and occasionally nearly ten years later we still have times like that) I just felt that I had nothing left to give! My celiac daughter was so sick the whole time I was nursing her and I had to go through an elimination diet. I ended up eating no dairy or beef and she got some better, but we were clueless about the wheat connection then. HANG IN THERE! Get on this board when you need some encouragement! My daughter was so sick and fussy that I babied her too much, and by the time she was three we had created a monster. It was hard for us to transition to being "tougher" on her, but it saved our sanity. I figured out around age 2 or 2.5 that she could have a meltdown in her room where I couldn't hear it just as well as she could with me holding her! ha. Sometimes just give yourself a little break from it all. It really won't hurt her to cry it out a bit in her room while you take a shower or whatever you need to do for your own sanity.


  7. Random thought, could someone be bullying her?

     

    She ACTS like a bullied child, but she's not! She usually wants me to stay and watch her activities, and the other kids really like her. She has spurned their invitations and to my perspective been rude to other kids, and then tells me that they don't like her. What is this way of thinking?? She is very sensitive and very competitive and genuinely gets her feelings hurt if she's not the fastest, strongest, and best at everything. I'm wondering of part of quitting is because she's not the best? Much to think about and observe. I'm holding off on taking further steps until we see the ped gi.


  8. Anyway....sorry to hijack the thread LFITTS! I hope you guys can figure things out with your daughter. I know being rural can make things so much more difficult. Heck, I'm not rural (though we aren't considered a big city either) but we still have a shortage of decent psych doctors around here.

     

    No worries! It's not hijacked - it's shared information!

     

    It's been a long week in which my sweet daughter refused two parties, quit gymnastics, worked incessantly in the garden and swam like a fish with her sisters. I didn't fuss, didn't push her to break away from the family. I'm feeling that she needs time at home to be nurtured. My biggest fear is that, when summer ends, she will be so withdrawn that it will be impossible to get her to school. Anyway, we have started a back and forth journal (sort of -- I wrote and now I'm waiting), gotten the names of a couple of recommended doctors, restarted vitamins, and eaten almost exclusively preservative-free real minimally processed foods. Onward and upward.


  9. I can see this mom doesn't like the idea of getting some counseling ( not saying drugs) for her and her daughter to help them get over this hump.

    .

    Not sure how I gave that impression because I am definitely interested on getting help. A pediatric therapist might be very good for us, but we are quite far from any services like that. I want to ask the GI Doc for a recommendation when we go back in a couple if weeks. I don't even know of anyone whose child is in counseling of any kind in the rural area where we live.

    I'm thankful for all the suggestions. We have no improvement except in my attitude.


  10. And last, because im a broken record, have they thoroughly tested her thyroid? Thyroid disease is autoimmune, like Celiac, and they like to run together. Withdrawal and mood changes are common thyroid symptoms. I assume a decent therapist would suggest it before treating her with other drugs.

     

    Actually her thyroid function never has been tested. She goes for follow-up blood work in a couple of weeks, so I will see if they can check that then.


  11. Hi LFitts,

     

    She is still early in the gluten-free diet.  Celiac disease can have many different symptoms, not all of them in the gut.  And they don't all go away in a few months.

    Celiac disease symptoms

    https://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

    Before I went gluten-free I had constant pain in my gut.  It took 9 months after going gluten-free for that to become intermittent pain instead of constant.  Which was a nice change.  But that pain came back very quickly whenever I got exposed to even a little gluten.  What I am saying is that it is very possible your daughter is still having pain from her celiac disease.  Even a tiny amount of gluten in her food will cause an immune reaction that does damage.  It's hard to be a happy, bright, care-free child if you are in pain.  My reactions now are sometimes a more dispersed, wide spread discomfort that is hard to identify to a specific area.  I get this kind of situation with reactions to other foods like dairy or nightshades.  Nightshades and soy also cause me joint pain.

    Once when I was healing I made the mistake of eating some dairy.  I was awake for 3 and half days straight and couldn't sleep at all.  You are dealing with a sick child.  She isn't just like every other non-sick kid.  She has special diet requirements and will react to foods in sometimes dramatic ways.  That just goes with having a digestive disease.  It's not something she can help, or just ignore.

    You have a difficult task.  Identifying food reactions is tricky even for adults with celiac disease.  Sometimes food reactions are delayed for a few days after eating a food.  Sometimes reactions can build up over time.  Sometimes we develop new food intolerances as we go that never bothered us before.  There is no one size fits all easy answer for celiacs.  We all have to learn what is safe for us to eat by experimentation.  Sometimes people have more food reactions when they are new to the gluten-free diet than they do later.  Dairy is often hard for people to digest at first but may not be a problem later on.

    I think it is worth trying a very safe, low risk,low allergen diet with her.  Like no preservatives, no processed foods, no food colorings, no candy, no anything that might cause a reaction in a very sensitive gut.  Think of her gut as damaged and trying to heal.  The less weird chemical stuff she eats and hard to digest foods, the easier it will be.  Simple, whole foods are the best choice.  Made at home, no eating in restraunts.  You might need to check her bath products for gluten also.

    I suggest no soy and no dairy for a few months at least.  If she doesn't get better then maybe some pshycolgical counseling would help.  But my thinking is that the known problem is the first place to look for causes (celiac disease) rather than assuming a new problem.  If she does get better on a "safe", low allergen diet, then you can try expanding her diet slowly by adding things back in on a trial basis.  One new food item at a time for a week.

    That's just some ideas for you to consider.  Remember healing from celiac disease damage is not like flipping a switch.  It takes time and it is usually a bumpy road with lots of hills and valleys to go through.  A slow general trend upwards is more typical than a sudden total recovery.  A year or more is not unexpected to get back to a general feeling of wellness.  For some people it can take several years.  For me it was about 5 years.

    B vitamins can be helpful for people with nerve issues.  Malabsorptoin of nutrients due to gut damage can cause plenty of symptoms by itself.

    I hope there is something useful for you in all that rambling. :)

     

    Thank you! Summer is a great time for us to cleanse our diet and we have been working on that since school got out. We are eating a lot straight from the garden, but we can certainly do more. Well meaning friends have given us gluten-free cookies and other 'treats' that they find. I am fully embracing a simpler diet where we know the source of most of our foods.We are eating local honey, salsas and smoothies made with real ingredients that we grew or bought locally, and more. She has rebelled against taking vitamins lately, and since she is not currently deficient on anything, I haven't pushed it. We add some vitamins to the smoothies, but not much at this point. She was enjoying the chewable probiotics, but doesn't want to take those either. I think she's exerting some control in areas where she can. I think I have just gotten frustrated and I do forget that she's sick, because she is so strong and athletic. She was so sick for the last year, and it has only taken a month or so of feeling pretty good for me to start to expect too much from her. If she wants to quit gymnastics and other activities and hang out with me all summer eating real food and being nurtured, then so be it.  I think that some of her withdrawal from parties, etc, is all of the food that is served. She has to either go without or bring her own, and she's just not comfortable doing that.

     

    I will be researching counseling options, but I want it to be a positive thing and not somewhere that I just drag her because I'm frustrated. Really, it's nothing new. She's getting older and I want to see her becoming more independent (like her siblings and peers), but it feels like she's moving in the opposite direction. Honestly, she would love for me to rock her to sleep every night and her legs just dangle all the way to the ground. I'm starting fresh in my attitude toward it all today, just being thankful that she is healing and feeling pretty good.


  12. First, thanks for all of the support and help so far. If is very encouraging just to say these things to somebody and have them get it.

    I do think we need to involve some kind of therapist, even if it's just to help with communication. She has never been able to communicate well verbally and has always been shy, so our problem isn't new. She didnt talk until nearly three and then in whispered complete sentences. But lately I am much more concerned about her mental health. She doesn't think that people like her and she doesn't want to participate in anything -- not school, scouts, gymnastics (which she is competitive in and has always loved), or going to friends' houses. Because she has been so sick for years, I've really babied her and let her get away with being too clingy. Now I thought we were moving in a positive direction and we are suddenly in a huge set back. Sometimes she will write me a note to let me know what's wrong and I think that is wonderful. If I could get a daily note I would feel better about everything.

    We live in a very rural area with not so much as a pediatrician around. We drive over two hours to the GI doc and will be glad to do whatever she needs, but there are definitely no support groups around here. I do think it would be helpful for her to be around other celiac kids, but we just don't know any. That's one reason I would live for her to go to camp. I don't know whether to be firm with her and make her participate in things, or be more patient and let her stick close to home all the time.


  13. I need advice, recommendations, or anything at this point. My 9 year old celiac daughter (diagnosed 6 months ago) has been feeling much better on her gluten free diet. We are trying very hard and still learning about cross contamination and healthy options. But, she has become very clingy over the last year and is slowly becoming reclusive. She has withdrawn from all activities, refuses to go to friends' parties, has quit sports that I know she enjoys and is good at. She basically wants to do whatever I'm doing all the time and is perfectly content to sit quietly at my office for hours if I'm busy. I have no idea how to handle her. Should I push her into the sports that she is good at and used to enjoy? Should I make her go play at a friend's house? I really can't make her do anything because she cries and refuses. I would love for her to go to celiac camp, but she wont even go five minutes away if im not there. She is turning me into a 'hovering parent' and i really dont want to be one. She is very smart, but non verbal for days sometimes. I'm frustrated, tired, and feel like my child probably has mental health issues that I don't know how to deal with. At times she is charming, funny, and 'normal' and at other times I feel like I'm living with a reclusive, manipulative preschooler.


  14. In this kind of situation, we always pack GoPicnic gluten free boxed meals. Our favorite one is turkey jerky with pop chips, dried fruit, etc. Each boxed meal has about 5 things in it that add up to 300 - 400 calories, so there's really enough. Of the Golden Corral locations that I've been in, I really wouldn't trust anything, except MAYBE the salads.


  15. Ok, we got our first Gluten free box from Tasterie yesterday! It's great!

    https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-ash4/q71/s480x480/293060_10200626089827642_10301535_n.jpg

     

    It contained two full-sized Pamela's mixes -- one for brownies and one for oatmeal cookies, a full sized Bob's Red Mill thick cut gluten free rolled oats, Udi's chocolate chip granola bars, and single servings of Chebe pizza crust mix, wild riceworks chips, and Way Better blackbean chips. Definitely worth the cost of the box. We made the oatmeal cookies this morning. The mix calls for one stick of butter and one egg (or their dairy / egg-free equivalents) and it made about 20 good sized cookies. They are soft and delicious!

     

    The Way Better chips taste great and are sprouted grain, non GMO products. I can't wait to try the rest of the items in the box.

     

    First round, definitely worth the $25 (free shipping). Even if we could get these products here (and we can't), we would spend more than that just on the oats, mixes, and bars. Oh, and there were coupons!


  16. As tough as this is now, it's going to keep on getting tougher for a little while, but you can get through this in baby steps. Do not eat out. Period. Not until you're a few months in and have got more of this sorted out. I'm only 5-6 months in w my daughter and we are still learning. Read everything in the newbie forum. Find the Perdue gluten free chicken tenders, udis chocolate chip cookies, and whatever other gluten-free treats he will eat. Amazingly, once he starts feeling better its likely that he will be more willing to try new foods. Come here for support and don't beat yourself up when he has a bad day.


  17. Her stomach was still hurting this afternoon so it was probably gluten.  Just disappointed for her because we are so limited in our small town that we usually take food for her when we eat out.  We have a PF Chang's and Mellow Mushroom around an hour drive from us.  She does fine at Mellow Mushroom so guess we will have to stick to Mellow Mushroom.  Hate to see her in pain and miserable. 

     

    Thanks!

    :( There is truly nothing worse.


  18. Haven't tried them.  Are you locked into a certain number you have to purchase? We did a beer of the month club BC (Before Celiac).  It was fun for about 6 months & then we started getting some repeats.  I think it might be a good way to try foods, & if you like them, you could buy more in the future.

    According to their site, you can cancel by the end of the month to not receive the following month's shipment (and all future shipments). It does not sound like there is a required minimum number of months. The FAQ page also says that you can skip a month if you're traveling. Sounds flexible.