Newly Diagnosed, Pretty Overwhelmed With Everything

[Stormy]

Hi-

I just got diagnosed about a week ago, and am getting really overwhelmed. Technically, I'm not really diagnosed, the doctor just wanted me to go on a Celiac food trial (easier said than done!) because I've been wavering between having semi-normal bowel movements to blow out diarrhea for the past 5 weeks. One blood test came back mildly positive and another came back negative, but I can't get biopsies done yet; I had to quit my job and get another one (too stressful) and I don't have insurance at the moment. On top of the diarrhea, I get these really bad cramps within half an hour or so after I eat (though I'm getting those lately after I eat dairy too, I think. Really hoping I'm not having dairy issues on top of this!), as well as a myriad of random symptoms no one can really find an answer to (brain fogginess, headaches, irritability and depression, anxiety, possible thyroid problems but nothing definite, things like that). One doctor discovered I had had a Vitamin D deficiency, but that was fairly easily corrected with a supplement (I actually had to cut back on the amount at one point, I was taking too much). I've tried to go shopping a couple of times, but each time I go and read the ingredient list, I get so frustrated because I don't know what actually contains gluten and what doesn't, and I've called one company that told me one of their products wasn't made with gluten, but was made on the same counter that products with gluten are made. Does this mean I can eat it, or should I not? Is there some key to shopping, or should I try to just stick to veggies, rice, meat and whatever is in the gluten free aisle? Are sodas/coffee/tea ok? Should I start avoiding dairy as well as gluten? I'm really overwhelmed right now and could really use some help! Thanks.

[kareng]

There is a list around somewhere of companies that will always clearly label wheat, rye or barley (Malt) in the ingredients. If you don't see it, the products are safe.

These are 2 big companies that will always reveal all gluten ingredients. I found knowing this very helpful when first shopping -

Kraft & Con-Agra

They make products that don't always say "Kraft" or "Con-Agra" in bif print

but it usually says somewhere on the product. I find reading glasses helpful.

For example: Conagra makes Jiffy Pop Open Original Shared Link

Kraft makes Planters Open Original Shared Link

You will see alot of advice to eat a natural, unprocessed diet. That's great but You still might want some microwave popcorn or cold cuts.

I have also found that sometimes there are different brands of the same thing that have different ingredients. Like, bottled salsas. I like Herdez because every ingredient on the bottle makes sense. Some of them have autolyzed yeast. If you were making salsa, would you put that in it?

It gets easier as you go along.

[SarahJimMarcy]

It's super overwhelming at first - you're not alone! Your idea of sticking to whole foods is a good one. I shop at SuperTarget and they do carry gluten free stuff. We are only about 2 months into the process, and I've discovered that if I buy something that says gluten free on the front, we are OK. Rice Chex cereal, Bisquick Gluten Free, etc are OK. But we have moved to more whole foods and it has resolved headaches, anxiety and stomach issues. We're still journeying toward more answers, such as food allergies and that kind of thing.

If a manufacturer tells you that something doesn't contain gluten, but was made alongside gluten products, avoid it. This is called cross contamination. I read in Celiac Disease A Hidden Epidemic that a typical sandwich has 3000 mg of gluten, and it takes only 100 mg to have a bad reaction. It would be easy to get to 100 mg even through cross contamination.

Keep trying, keep asking and hang in there. You're in the most difficult time, but look, you've already made it through the first week!

[kareng]

I found the list of companies:

Open Original Shared Link

[sreese68]

This grocery guide really helps: Open Original Shared Link They make nice dining card for eating out, too.

You should do a search here for cross contamination and the kitchen. There are a ton of posts on it. You'll need to scour everything down in the kitchen and not use your current toaster, etc. Cross contamination can really cause problems. I had a friend help me finish getting the last of the gluten out of my home. She moved the the wheat flour out and wiped those shelves down for me. I didn't touch any of it, and I still got glutened!

And yes, it is overwhelming. It does get better. I've never cooked this much in my life, BUT I now have the energy to handle it!!

[Takala]

Stick to the non processed foods around the perimeter of the grocery store aisles as much as possible.

Make a list of written list of what you normally eat during the day.

Example-

breakfast: cereal and milk

lunch: sandwich

dinner: spaghetti

And then work on converting it to gluten free alternatives by asking for examples here and by using google. For instance, you can search "gluten free breakfast cereal" and pick up from the links which brands are really gluten free.

For the bread, which gluten free brands or which types of gluten-free mixes to make your own.

For the pasta, which are the best gluten free rice or corn pastas, etc. And which sauces are gluten free, or start making your own out of canned tomato puree.

Then take your list to the grocery or health food store (I recommend smaller non chain health food stores instead of the Big Ones, more attentive to customers, and may also be cheaper than Whole Paychex) and get some of those replacement items you need. You are looking for "gluten free" on the label. Avoid "natural flavors" unless the item is also marked gluten free, because in this country (USA) anything can be in "natural flavors." Nice loophole.

Sodas, coffee, tea - currently, Coke and Pepsi are gluten free. Ditto club soda with a twist of lime.... Many plain coffees in packages are gluten free. Most plain teas are gluten free. (some brands of flavored Tazo brands teas contain gluten). But what about your coffeemaker ? We have an ancient one that I don't use because the basket is plastic and it's had a lot of flavored coffees run thru it. Don't use the coffee grinders at the grocery. Stick to the plain, unflavored stuff. Currently, the Taster's Choice instant is gluten free. I am mistrustful of fancy coffee drinks from coffee shops and just won't do them anymore because of the hit-and-miss issue of cross contamination, if I want to risk getting ill, I'd rather it be over something a bit more substantial than something I can make myself, anyway.

About the dairy, being lactose intolerant is another sign of celiac and gluten intolerant. After you have been on this diet for awhile, you may regain your ability to tolerate some non lactose dairy, such as yogurt or aged cheeses. In the meantime, there are such things as as gluten free and dairy free milk substitutes, such as rice, soy, nut, hemp, and coconut milks. Avoid Rice Dream, it's made with a barley enzyme and it's caused a lot of problems for many sensitive people. Canned coconut milk makes an excellent tea and coffee creamer, for example. If you are cheese sensitive, there are gluten free dairy free cheese products which are acceptable.

You may also have reactions to other foods that you don't realize yet. One of the most common culprits is soy, so if you are not making any progress, you may want to trial avoiding that for a time, also. But get rid of the gluten protein in wheat, rye, and barley and spelt first.

If you are carbohydrate intolerant and tend towards insulin resistance, you can start eating a non traditional, higher protein breakfast such as eggs, fish, or meat, fruit or vegetables, with rice or flatbreads/pancakes made out of nutmeals. I buy almonds in bulk bags and then grind them in a dedicated blender and make a lot of things out of nutmeals and the higher protein gluten free flour substitutes such as amaranth, garbanzo bean flour, and buckwheat (which is actually a seed and not in the wheat family). This sounds more complicated until you get the system down and then it is not so difficult.

You can't bake and can't imagine doing so, but are desperate for something. 1. Rice cakes (Lundberg is safe). 2. Corn tortillas (Mission is currently safe). 3. You get a little bag of something like Pamela's gluten-free mix, and learn to make microwave, single serving bun-in-a- cup quick breads, where you put a few ingredients in a little ramekin and zap it for 30 to 60 seconds. Or you can use other gluten-free things in this, such as nutmeals. Or you figure out how to make quick pancakes/flatbreads for any occasion, customized to your needs and made of your own mixes.

Cross contamination:

For your kitchen, you are going to need to get a new, uncontaminated cutting board, rubber spatula, dish sponge for sink, colander for pasta draining, toaster, tupperware, unscratched teflon pans. If you make pastry you may want to get a new rolling pin, but in the meantime you can roll out gluten free dough between two sheets of wax paper, using a drinking glass, and that works. If you use cast iron pans, you will want to have them dedicated to cooking gluten free, you either use new ones or re season the old ones after burning off the old finish in the oven cleaning cycle and scrubbing them out.

Can't afford or don't have a cutting board yet: put a folded paper towel down on a ceramic dish, for example. Paper towels are your friend !

[Stormy]

Wow, thanks guys. Definitely have a lot of work ahead of me. Guess I get to throw away the cheese I just bought, too. How long is it before I would notice a difference with myself? When should I start eliminating other food from my diet to see if I'm allergic to them? (This is so strange to me. 2 months ago my nickname was human garbage disposal! I was famous for eating anything with no problems at all! Talk about a change...)

[Stormy]

Also, I have glass cutting boards. I assume those are okay still, or should I get rid of them too?

[kareng]

Also, I have glass cutting boards. I assume those are okay still, or should I get rid of them too?

The basic rule is : if it has scratches, cracks, small holes or seams where crumbs can hide - get rid of it. Glass sounds OK. Just was well with vinegar or something to get any slimyness off.

[Stormy]

Ok, cool. Thanks for the information! Now to go poke around some more.. I was out with friends yesterday (and one of them is gluten sensitive, so they understand ) and actually found out a place we like to eat has a gluten free menu!! That was awesome.