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Questions From A Newbie

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hi all

i am newly diagnosed as a 'silent celiac', so don't suffer any GI problems but i do have adrenal/cortisol and thyroid problems. i am trying oust all that nasty gluten but i am having trouble as to how nit-picky i need to be. should i get rid of anything that's made in a factory that processes wheat products or only if made on the same line? should i avoid everything on the bottom of this list as well? http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html. i can't tell when i've been glutened (at least not yet).

i am aware of the hidden gluten in the medicine cabinet as well but luckily our lotions, toothpastes, etc. already happen to be free of it.

i suppose i'm looking for a manageable way to start the gluten-purge as it is all so overwhelming. to add to it, my daughter, who is 5, has been diagnosed with it as well and it's just so depressing :( i have had to clear out my kids' cereal stash and don't have a lot to replace it with yet. i did a little browsing at whole foods yesterday but it seems like everything either has gluten in it or is processed in a gluten factory.

i should add that i have been dairy, egg, sugar & sweetener, lime, and tomato-free based on a a VEGA test done more than 6 months ago. avoiding these foods has helped reduce slightly my continual headaches. i am holding out hope (rightly or no?) that i may be able to enjoy some of these once my gut heals. all of my food restrictions make cooking difficult.

do you have any advice for me?

thanks in advance :)

nicole

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Let's see if I can help. I'm about 2 months into this, so I feel your pain. Like you, I have little to no digestive symptoms (anemia was my red flag), so I also struggled with wondering how careful I needed to be since I wouldn't know if cross-contamination was a problem for my system or not (or even if I got glutened!).

In my research, I've learned that in most cases, you want to avoid the "processed in a plant" and "on a line" etc. products. However, some brands process wheat in the same plant but do ELISA testing to ensure the gluten-free status of their gluten-free products (I saw that on a Mi-Del gluten-free cookie package just yesterday, for example), so those are fine. Google is your friend! There is LOTS of info about there so if you've got something processed in a plant with wheat, google the company name and see what you learn about how careful they are. (Another example -- Amy's brand has some gluten-free products and clearly disclose that they are made in a plant that processes wheat, but everything I've read is that they are very conscientious about cross-contamination, so I go ahead and buy them.)

Kid cereal-wise, assuming your child is not also sugar free, Cinnamon Chex are the BEST. Honey nut chex and chocolate chex are reasonably decent tasting too. The Envirokidz cereals (my local grocer and Whole Foods both had them, I believe) are also kid-friendly gluten-free cereals. Kinnikinnik pancake mix is AWESOME and Karo pancake syrup is yummy and gluten-free (I'm sure others are too, but I was happy to learn about that one since I had eaten that syrup regularly in childhood and it was a familiar product!).

Udi's bread is a good sandwich bread. The Cecilia's Market book called Gluten Free Grocer Shopping Guide is a wonderful help in the grocery store. If you're also Casein free (which it seems you are but I'm not sure about your daughter), I think they have a different book that lists gluten-free and CF products.

That's a start. Poke around this forum and just google stuff. It's overwhelming at first, but it gets easier pretty fast (and they say it gets to be almost second nature within a year, though a year is too long for me to think about and might be for you too!).

I chose to go cold turkey and stop consuming everything I could identify immediately. Others have chosen to only buy replacements that are gluten-free and just ride out the rest of your house inventory (since you don't have GI symptoms that will force the issue more aggressively). That's your call. Since I'm the only gluten-free person in my family, it still gets consumed unless it's only used in cooking (in which case I donated it to the food pantry).

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I too have very few symptoms of glutening. Mostly just bad D for a couple of hours and then back to being OK. I have been doing the diet since Jan of this year and so far have not be "accidently" glutened. Even last week I apparently read a label too quickly and ate something that had soy sauce in it...I had no symptoms of glutening. I went back to buy the same thing again, and re-read the label and sure enough I found the soy sauce this time. Now I suppose it is possible that they changed the ingredient list, but seems hard to believe that that would be the case in just a very short period of time....but ya never know. Of course I didn't buy it again, but it had me thinking about how many other times I may have made the same mistake and I have had no side effects from it. That is both Good and Bad....good that I am not sick when I eat stuff, but bad because I never know when I am eating something I shouldn't, but it is still doing damage to my intestines.

I am able to eat things that say they are processed in the same facility as "wheat," but I have heard of TONS of people not able to do that. I have also been told that the longer you are Gluten Free the more sensitive you become, so what I can eat now may change.

I would start with a good cleaning in the kitchen and get rid of all of the gluteny items that you have...food pantries love dontations of unopened packages. I would replace any scared or marred plastic bowls or spoons, and all wood cutting boards or spoons. If you have pans that are scratched or marred I would replace those as well, but otherwise just give them a good scrubbing. Also a sneaky little place for gluten to hide is in your collander that you drain your pasta in. You can almost NEVER get to all of the nooks and crannies in that thing. Run your dishes/silverware through the dishwasher and you should be fine there.

If you use a bread maker that should probably be replaced, along with your toaster. Otherwise just give things a good scrubbing and you should be fine.

Hope this helps and doesn't cause more frustration/apprehension on your part.

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Because we do not experience symptoms, this make the entire process more difficult. I suggest working closely with a GI doctor and being re-tested to see if the antibodies are back in the "normal" range. I found this to be comforting information. I have also found that as my system heals I have even less reaction that when I was first diagnosed.

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I started out with the Paleo Diet (the book is on Amazon) about 5-6 weeks ago. It was easiest for me to just eliminate everything processed and stick with the basics (meat, veggies, fruit, nuts & oils). I went through some sugar/carb withdrawals, but then felt like a new human. My GI symptoms are mostly gone, my hypoglycemia is "cured" and I've only had a few headaches since starting this diet. I've slowly reincorporated some strict gluten free foods back into my diet (Udi's bread...super yummy), but limit how much I intake as rice & corn (super high glycemic factors for my hypoglycemia) used to send my blood sugar downhill quickly. So far, I'm tolerating small amounts of them wonderfully. The Paleo Diet is a good starting place if "replacing" gluten foods seems overwhelming. This takes the guess work out of replacement and tells you to stick to meat, veggies & fruits, some eggs. My carbs now come from fruit & veggies, with tiny amounts from rice or corn products.

My kids will start their celiac disease testing next month, so they are still glutenators. I will be back asking for help when they go gluten free! Good luck!

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thank you to everybody for your thoughtful comments :)

ok so i guess i'm not completely a 'silent' sufferer (now that i'm looking for symptoms). my DH dosed me a few days ago (he felt really bad) with a rice dish by adding pearl barley (despite the fact that HE sent me a link of all the gluten offenders) and i subsequently noticed some mucous that my ND had previously asked me about. it also reminded me of a tender lump in my abdomen that i only notice when lying down and have gas, but slips my mind when i see my dr. any ideas on that one? it's on my left side, in between the top of my hip bone and my lower rib.

another question for you: i have been reading books on celiac disease but what i have yet to come across is how exactly to do you remove the gluten from items in your kitchen? does it suffice to put them in the dishwasher? since you can't kill it with the heat from the oven, i'm assuming that it's not the heat from the dishwasher, but the fact that you are getting the gluten molecules down the drain? is this why you can't keep the wood spatulas and scratched plastics? what about plastic cutting boards? does a 20-year old gluten molecule still have the same poisoning effect?

regarding processed foods, it seems as if there is a continuum of opinions ranging from 'i don't feel an effect so i eat it' to 'it might have gluten in it because it's processed in a facility that processes wheat products, so i won't eat it'. is it just a matter of deciding where you fall on the continuum? i would rather not be so hard-core but am finding it hard to rationalize consuming potentially contaminated products. or can my gut recover from such small doses? perhaps my answer will become clearer as i develop more evident after-effects? do i have to stop eating my nana's cookies? they are the only dessert i have found that i can eat (that is gluten-free, EF, DF, & processed-sugar free).

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another question for you: i have been reading books on celiac disease but what i have yet to come across is how exactly to do you remove the gluten from items in your kitchen? does it suffice to put them in the dishwasher? since you can't kill it with the heat from the oven, i'm assuming that it's not the heat from the dishwasher, but the fact that you are getting the gluten molecules down the drain? is this why you can't keep the wood spatulas and scratched plastics? what about plastic cutting boards? does a 20-year old gluten molecule still have the same poisoning effect?

I'm so sorry you got glutened from the barley. It is difficult to get started with a gluten free diet and kitchen.

With an abundance of caution I've gotten rid of a lot of kitchen things (a friend thinks I'm suffering from total OCD regarding this whole cross contamination idea). dry.gif I know she just doesn't "get it".

Certain items are so inexpensive to replace like wooden spoons, plastic or rubber scrapers, cutting boards, etc. Since I live alone, it's so much easier for me than in a mixed kitchen. I figure if there's any possibilty I might have a problem, I've gotten rid of it. I'm assuming your entire family is not gluten free so if that's true, you probably want to have your own condiments (butter, peanut butter, jelly, mayo, etc.) and a separate storage area for your own things. I bought a new toaster and nonstick cookware (mine was crappy and also ancient)...anything that might be suspect of harboring gluten that I didn't know if it could be cleaned or not. I kept my Calphalon cookware as it can be scrubbed well with a ScotchBrite pad and Comet cleanser.

I'm still fairly new to this gluten free way of living and I'm convinced I am lactose intolerant as well. Got zapped good while testing ice cream on Fri. evening. ph34r.gif I feel it's definitely a lactose thing as there were no gluteny ingredients in it. I still have no idea if I have other intolerances that may crop up.

Personally I still don't know if I have problems with foods manufactured in shared facilities. I guess time will tell...

I hope you can figure out a way that works for your family!

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