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13 Year Old Sick All The Time :(
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Hi just found you guy's!!!!!!!! I am a single mom my daughter has celiac and type1 diabetes ;( she is sick all the time, I feel like we live at urgrnt care, her doctor just basiclly tells us to deal with it, her diabetes doc is more helpfull but can only see him 3 times a year, living in colorado so blessed to have the barbra davis center for diabetes but they are booked months in advance, my kiddo is hardly ever at school so the school is making it really difficult for me, i feel like we go to urgent care at least 3 times a week just for doctors notes, my income is limited so i can't even aford the fancy gluten free foods ;( I would love any advise on what we can do to get her feeling better we do strict gluten free also have to do sugar free for diabetes, and doctot has her drinking Miralax like crazy, which i am so afraid that this is bad for her,even though she has been gluten free for at least 3 months all the xrays still show that her colon is still not cleared completely please any help would be so gratefull, so tired and sad about this and it's hard when you don't have backup, it's just me and my kiddo, Thank you

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You don't need to buy all the gluten free (easy to use) items.

Put her on a whole foods diet (meat veggies fruit grain) stay away from processed foods for a while.

Those gluten free goodies are just that, goodies. They do not need to be eaten on a daily basis. You can also learn how to make them yourself.

To avoid cross contamination it is best to replace things that are scratched, that are wooden, that are plastic (colender), and to have a seperate toaster.

Have you checked if her toothpaste is gluten free? What about chapstick? Makeup?

Will she eat prunes or drink the juice? What about a digestive enzyme pill, those help.

Has she been strict? I'm not trying to imply anything but sometimes with children, especially those just starting out, it is very hard on them and sometimes they cheat.

What about the school? Do you have a 504 plan for her? If not, get one. It will help with the absences and whatnot. Since celiac falls under the ADA act (americans with disabilities act) they have to accomodate.

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I think your state will have "homebound" student exemptions too. It is not easy, but all her work is sent to your home with a teacher visit once a week.

Some states are starting more on-line options for PUBLIC school as well as private school options. Connections Academy (make sure you are in the public school option) and K 12 are two cyber schools that I know of. Sometimes public school environments are not for every student with medical conditions, even if there are 504 plans in action.

Some other areas of cross=contamination...

pet foods

cross contaminated baking ingredients (flour dust clouds can contaminate other ingredients)

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In my area you can get fresh produce really cheap at the farmer's markets. I don't know how those guys make a living. It might help for you to keep a gluten free household. Other members of the family can still eat gluten outside the house, but it will cut down on cross contamination possibilities in the house. That helped us.

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Exercise is really good for helping to manage blood sugar. Would she be open to joining an athletic or exercise group? I know the local colleges/community centers around here offer drop-in yoga, pilates, etc. at free or cheap to the public. She could go when she is having a good day, and she could see if it helps her.

Also, laxatives increase the transit time of food in your body, decreasing absoption. Clearing up that end of things will probably cause her to feel a lot better.

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Another thought, shared items like butter, peanut butter, mayonaise etc.. My dd kept getting sick and I realized we had all gotten lax, about keeping her items seperate. Although everyone was careful, enough cc was getting into these types of items to cause problems.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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