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New To All Of This
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Hi - I'm new to all of this and a little overwealmed.

My 6 yo son is not "officially" disgnosed with celiac disease - yet. He had positive blood tests but negative biopsy. His Pediatric GI is repeating all blood tests, doing a special Celiac Panel through a special lab, ordering fecal tests, sweat test for CF(a waste since I am not a carrier) gave me the option of repeating the biopsy or doing a year gluten-free Diet with a gluten challenge afterwards and another biopsy possibly. FYI - He is VERY small for his age, has attention issues, speech issues, severe dental issues and is anemic but no other "physical symptoms" - no pain, bowel issues etc.

SO - on we forge to a gluten free diet. This will be a challenge as he is very picky and will not eat some things because of his teeth and oral sensitivities. Basically every single thing he eats is full of gluten - PB&J, Grilled Cheese, Mac and Cheese, chicken nuggets, Spaghetti, toast, cereal etc..... I have two books already and have read quite a bit and have tried some gluten-free staples and all I can say is - GROSS!!!

So basically I just need some guidance from the "Pros" -

I need to know what bread is the best and closet to "regular" bread - He eats PB&J EVERY day and the bread I found just didn't hold up - in fact it crumbled when I was just trying to take it out of the bag?!?!? (And was $4.50 for a small loaf - grrr) Also how does it hold up for grilled cheese etc?

What's the best cake mix? Are "store" frostings ok?

What about bread crumbs? Best macaroni and cheese? Best pasta?

I need all the favorites and tips you want to throw at me. Plus how about money saving tips? I know this is going to be so expensive for a family of 4 and a baby(We will all go gluten-free if Nick has to go gluten-free)

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MarryanneQ,

I am by no means a "Pro" yet. I have my biopsy on May 13. But I am planning on going gluten free after the biopsy regardless of the diagnosis, so I have been checking labels, looking for web sites, and contacting manufactures. I also plan to limit gluten for my two children (8 & 11). These are the gluten free items I think kids would like:

Act II and Pop Weaver microwave popcorn

Fritos

Cheetos

Ore-Ida Golden Crinkles (not all Ore-Ida French fries are gluten-free, but I have the complete list)

Tillamook yogurt

Bush

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Hi Maryanne,

We use Kinnikinnick bread. It is lighter than most gluten-free breads and doesn't crumble, but it is a bit chewier than regular gluten breads. My kids like it toasted, and I imagine it would be fine for grilled cheese (haven't tried it since we are all off dairy right now).

You can sometimes find it in US healthfood stores, or you can order it online at Kinnikinnick.com . Shipping is $10.00 no matter how much you order. the bread is pricey at $4.50 a loaf and only 15 slices in a loaf, but it is worth it to me. I can't stand the dense dry crumbly loaves of gluten-free bread I was wasting my money on before. This bread is more like normal bread. I have tried the Sunflower Flax Rice Bread, Robins Honey Brown Rice Bread, Candadi Yeast Free Multigrain Rice Bread, and liked them all. The yeast free one was more dry than the others. They sell a white sandwich bread that is supposed to be very good, too. I plan to try that with my next order. We have also tried their donuts. We liked the cinnamon sugar and the chocolate dipped ones.

The most liked pasta in our family is Tinkyada brown rice pastas. I have served these to non-gluten-free people and they couldn't tell the difference. They taste great. Lundberg farms is good too. We did not like DeBoles brand, but others have said it is their favorite. Stay away from the bean pastas. They taste nasty.

The best cake mix by far is Chocloate Cake by Really Great Foods. I buy mine from Gluten Solutions. Gluten Solutions website Their muffins and yellow cake are good to, but the chocolate is the best we have ever had. My kids and I like it better than "regular" chocolate cake. It tastes so good, they like it without frosting. I decorate it with powdered sugar.

If you want frosting the ready made Pillsbury is gluten-free. They will list on the back if it contains wheat, milk, soy, etc. as far as the allergens go. We use the white frosting, milk chocolate and chocolate fudge flavors of frosting.

Since we are dairy free we don't do mac'n'cheese right now, so someone else will have to help you out there.

God bless,

Mariann

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MarryanneQ,

Just some more thoughts

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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. 
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    • 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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