Tips for newly diagnosed celiac

[milomama]

Just diagnosed with CD, and I'm looking for ways to maximize the healing, as the biopsy showed total atrophy.  Learning the ins and outs of hidden gluten and cross contamination...anything I need to watch out for that isn't too obvious at the start?  Do I need to avoid stuff processed on the same line as gluten?  Same factory?

 Is there anything in particular I should eat or avoid?  Any helpful supplements?  

Also, any particularly yummy gf recipes or products to keep me motivated and happy :)

Thanks so much for advice from anyone experienced with the gf lifestyle.  I know many people have been though this and I'm hoping to steal some of the wisdom already out there!

[CrunchyChristianMama]

I found this article super helpful.  Her whole blog is full of delicious recipes that I highly recommend.

As far as healing goes, for my 2-year-old we are doing some cell salts and keeping her away from sugar and processed food as much as possible to allow her body to heal.  I also make my own bone broths to help with healing. 

Things you may not think about -

- Watch for cross-contamination.  You need your own jar of peanut butter, stick of butter, etc. if others are going to be using it with a knife or utensil that has also touched gluten. 

- Eating out is super tricky as well.  Just because the hamburger and fries are technically gluten-free doesn't mean they weren't cooked in oil that also cooks gluten-containing foods or on a grill where buns are toasted.  When you pick up the ketchup bottle, wrap it in a napkin so that you aren't picking up residual gluten off of it. 

- Check your beauty products.  If you put lotion on your hands and then make yourself a snack, you are going to be eating gluten.

- Clean out your kitchen.  Non-stick, plastic, wood, etc. all hold onto gluten molecules and need replaced.

- Wipe down everything really well.  The steering wheel, the fridge handle, the remote control, the cart at the grocery store.  Anything that gets touched by others while they may be eating gluten foods potentially is hanging on to gluten molecules.

[mtm]

post some of your fave foods and we can find you a yummy gf alternative.

[flightgoddess]

I saw a nutritionist, and she suggested L-Glutamine to aid in gut lining/cell turnover, probiotics, fish oils/Omegas, magnesium, and I was taking prenatal multivitamins because I planned on trying in a couple months to get pregnant. (So regular multivitamin would be ok)

I also went dairy free for a while too. I reintroduced it back a couple months later slowly starting with probiotic dairy (kefir, yogurt)

[kittywitty]

Hold on-plastic, wood, and non-stick need replaced? Even if washed in the dishwasher several times? I totally can not afford to replace everything we own! We have some stainless steel and cast iron but they are pains to use most of the time. And glassware doesn't work for everything-like the kids' favorite cups, etc. And I can't find the eco non-stick stuff anywhere anymore!

[kjbrown92]

Originally Posted by kittywitty 

Hold on-plastic, wood, and non-stick need replaced? Even if washed in the dishwasher several times? I totally can not afford to replace everything we own! We have some stainless steel and cast iron but they are pains to use most of the time. And glassware doesn't work for everything-like the kids' favorite cups, etc. And I can't find the eco non-stick stuff anywhere anymore!

For us, if the plastic can go in the dishwasher, I use it. I do not use any of the wood boards because my DH uses them for his gluten-containing foods. Any non-stick cookware that we use, if it has something "allergenic" in it, it gets washed 3 times. Also, after washing anything gluteny (like pizza dough or basically any dough) I throw out the sponge. You can either get a separate toaster, or they make special bags that you can put your bread in so that it doesn't come in contact with the parts of the toaster that have had gluten-filled bread in it. Make sure that if people are serving themselves, they don't touch the serving spoon to their regular noodles or whatever if that same spoon is going to go back in the pot (I have to remind the 2 gluten-eating people in my family of that EVERY time we eat a pasta dish, and it's been 2.5 years). We have two separate colandars because they're very hard to clean. We have two separate spaghetti fork/spoon serving things (again, very hard to clean).
 

[scsigrl]

I have been to 2 different nutritionist and one said no need to replace, one said to replace everything. Our GI said no need to replace it all either.  2 to 1, not replacing it all.

We have not replaced everything.  I try to mind what things I use for DS's stuff but I am not about to make myself totally nuts over it. There are plenty of other things I need to deal with that getting down to that level isn't something I want to do.  IF there are issues with DS's ttG levels after a few more months, we'll reevaluate.

[tanyalynn]

In terms of replacing stuff... we don't have celiac, we're just gluten intolerant.  Early on, my son and I reacted to small traces of gluten, whereas now, a few years down the road, we don't.  By small traces--I had to throw out our plastic food storage containers, wet foods stored in containers that had gluten-y stuff before would be cross-contaminated.  I don't think drier stuff would do that--it was mashed potatoes that did it, stored a night or two in the plastic container, just as a specific example. 

Early on, I had to be pretty careful with cross-contamination, I wouldn't buy the stuff that had that annoying "made on the same equipment as wheat" warning, which limited us a lot.  Now that I don't react to it, I don't avoid to that level.  And some people never react to such trace levels (vs some people react to homes where bread is baking), so some of this is trial-and-error. 

In part, I used this as motivation to get rid of types of cookware and food storage containers that weren't that great--I've slowly switched to stainless steel for cooking and pyrex for food storage.  We didn't have gluten in our plastic cups, so we mostly still drink from plastic, or sometimes mason jars. 

[CrunchyChristianMama]

Originally Posted by tanyalynn 

In terms of replacing stuff... we don't have celiac, we're just gluten intolerant.  Early on, my son and I reacted to small traces of gluten, whereas now, a few years down the road, we don't.  By small traces--I had to throw out our plastic food storage containers, wet foods stored in containers that had gluten-y stuff before would be cross-contaminated.  I don't think drier stuff would do that--it was mashed potatoes that did it, stored a night or two in the plastic container, just as a specific example. 

Early on, I had to be pretty careful with cross-contamination, I wouldn't buy the stuff that had that annoying "made on the same equipment as wheat" warning, which limited us a lot.  Now that I don't react to it, I don't avoid to that level.  And some people never react to such trace levels (vs some people react to homes where bread is baking), so some of this is trial-and-error. 

In part, I used this as motivation to get rid of types of cookware and food storage containers that weren't that great--I've slowly switched to stainless steel for cooking and pyrex for food storage.  We didn't have gluten in our plastic cups, so we mostly still drink from plastic, or sometimes mason jars. 

The problem is though that with Celiac (as opposed to an sensitivity) you don't have to have an outward reaction to have even a molecule of gluten still doing major gut damage.  Lack of reaction does not equal ok to eat/use. 

For us it was just a sacrafice we decided to make.  She's only 2 years old and has a lifetime to live with this.  I can't risk any damage now because it's cumulative and you do just a little damage for years and years...  Anyway.  So we got rid of everything that wasn't glass, stainless steel, enameled cast iron, or whatever our eating dishes are made of.

[elonwy]

Check out www.celiac.com they have tips, recipes and a HUGE message board that I found invaluable my first couple years learning to navigate the GF world. Like another poster said, you don't always know when trace amounts are causing problems, especially if you've been living with it so long that you have total atrophy, I'm going to guess you're symptoms weren't that overt? Or you were just mis-diagnosed for years, like me *sigh*

I am one of the 10% that is super sensitive, so I avoid anything that is "the same line" but don't sweat "same factory" unless it makes me sick, then I put it on my "no" list. As for cookware, after making myself super sick a few times, I tossed everything plastic or wood and started all over again. I've gone mostly non-plastic in my life anyway, we use glass instead of tupperware, etc, but that really is a personal choice for people, especially if you are dealing with a shared kitchen. Tin foil is your friend :)

I would suggest starting off with really simple foods for a while, to give your gut a chance to heal faster. Avoid dairy, since if you're atrophy is that bad, the parts of the celia that deal with dairy aren't there anymore. Avoid processed foods. Rice, soups, whole foods. Soy can be a big trigger too if you've been sick for a long time. Avoid Oats, even though some people say they are ok, a certain percentage of celiacs cannot tolerate them, wait to test them out until you've been GF for a year at least, to let your body have time to heal so you can tell what your reactions are. Be careful jumping straight into ready made GF products, they tend to have higher fat and sugar content than the mainstream ones, and especially if you have been having lack of weight gain issues, the sudden increase in these things can cause you to gain weight very quickly.

Check your vitamin D levels. Celiacs don't absorb this well, even after diagnosis and diet changes and most of the foods that have it added in we can't eat. Low vitamin D can impede the gut healing properly.

Welcome, remember it's not that hard, and good luck!

[milomama]

Thanks for the tips everyone.  The kitchen has been cleaned top to bottom and the whole house is staying gf.  We have a tiny kitchen, so there was no way to keep it segregated without me constantly cleaning and checking.  As I have a toddler, there is no time for that!  Also I don't know that my body will tell me if I've been cross contaminated, as I've never noticed clearly that it's gluten causing problems.  The gastro actually assured me that it was IBS and not celiac causing my somehwat vague symptoms, and did a scope just to make sure.  She was wrong.

I jumped right in with packaged gf foods, which I want to get away from.  I considered my self healthy before, but it somehow happened that I went out and bought all this gf packaged stuff. Before this I never ate chips, but in the past week I had chips a few times, I think just cause I knew they were ok.  Weird, and obviously not something I want to stick with.

Any good bread recipes though?  I really like bread and need to know that the bread will be there!  Especially a bread that will work for French toast?  It's my favourite.

[scsigrl]

Originally Posted by tanyalynn   And some people never react to such trace levels (vs some people react to homes where bread is baking), so some of this is trial-and-error. 

With Celiac's, a person doesn't react like this. Unless there is gluten CONSUMPTION there isn't an issue. If they have a problem with wheat (an allergy or intolerance) on top of Celiacs, they may react to things like bread baking or touching something with gluten in it. Now if they don't wash up properly they may "gluten" themselves but that's an x-con issue.

[elonwy]

Try either Pamela's bread mix or the Gluten free pantry bread mix. Those are the two we use most often at home and I find they are the most like the gluten thing of anything out there. Most of the prepackaged bread is pretty gross, unless you have a bakery near you. As far as french toast goes I have no idea, since I can't eat eggs. One trick with gluten free packaged stuff, is that microwaving it just for 15-30 seconds greatly improves the taste and texture.

Udi's bread seems gross and weird, but when you microwave it, it becomes rather edible. Toasting can also produce a similar result but can also dry the product out a bit too much.

When I first went GF I found I also ate a lot of crap, because it was the easiest thing to find. Now I eat a lot of whole foods and I can go days without eating bread or anything like it. We do a lot of crockpot, cause it's cheap and easy. If you crockpot, check out this site: http://crockpot365.blogspot.com

She also wrote a couple cookbooks. Everything on there is designed to be GF.

[scsigrl]

Do you have any allergies you are dealing with as well?  I know Pamela's is nut heavy. Not sure about GFP.

We have had success so far with King Arthur mixes! We used the chocolate cake mix last week and just make the pizza last night!  The kids LOVED it!  Compared to much of the GF products out there they are really good!

[elonwy]

GFP is rice, potato and corn.