Desperate, Anxious Please Help

[primresp]

I'm sending this out into cyberspace hoping there's a help on the other side. I need help. I am totally and completely overwhelmed and confused.

I'm gluten intolerant, but it's not clear if I'm celiac (negative blood test, but positive for both genes for gluten intolerance, and positive stool testing from enterolab). I am also allergic to soy, dairy, eggs, black pepper, and some other random things like pinto beans, and codfish.

I found all this out about a year ago. I had NO idea I had any of these food issues. My symptoms are sort of vague. I never got "sick" from eating any of these foods. But, after I stopped eating gluten, soy, dairy, and eggs, my thyroid antibodies went down 50 %, so I knew I was onto something.

I have been vigilant with my diet (or so I thought). But recently something has happened, and I'm not sure that it was one particular incident, I think it's been a gradual thing, where I have been educated/paying more attention/ seeking out answers.......... and I'm terrified by what I've learned.

This whole time I thought I was doing so great with my allergies, only to find there's a whole world of things I've been neglecting to be vigilant and worry about. And I just feel so scared and overwhelmed and confused and anxious about all this.

For example, only recently have I come to discover (and obsess about) that I needed to have separate (or buy new) pans, utensils, etc, that I couldn't kiss my non gluten-free husband, that eating in restaurants is a gamble at best, that I needed to clean my kitchen (and car, and keyboard) of gluten.....Only in the last few months did I sit down (tearfully) and ask my husband that we go gluten-free in the house. So we did.

But somehow it really hasn't happened. I mean, I didn't throw out everything and start from scratch. It's almost like I've done it in "stages". Calling certain companies about the few processed products I have at home, but I can't explain to you why I never called about others. It's not laziness, I swear, it's just that I think a lot of me has had a hard time wrapping my brain around this whole thing. That every single thing I eat needs to be checked out first???!!! And that even if a product should be "Gluten Free" (such as, say, beans), that it may, in fact, contain gluten. And it's making me CRAZY. I'm not sleeping well, I'm obsessing about getting gluten into my body, I'm spending hours a day online scouring sites like this, trying to get my questions answered, and trying to get info about certain foods. In short, I'm a mess. And the worst is when all I want to buy are some nuts or beans or whatever, and even after 2 -3 hours online, I cannot find a place to buy those things. It took me about 4-5 hours to find gluten-free nuts, and unfortunately they are still processed with soy, dairy, and egg, so I just soak and strain the heck out of the nuts and hope that's ok. But part of me worries (see a theme here?) that it's not enough.

I eat mostly organic whole, fresh foods. I eat a lot of raw vegetables, make soups, smoothies, etc. I eat very very little processed food. I have no interest in most gluten free items that others write about, as I think they are basically gluten free junk food. I want to eat healthy, whole food that is gluten-free/SF/CF/EF, etc.

Most of the stuff I buy from can or bag is nuts/seeds, olives, beans, that kind of stuff. But in my recent obsessive phase, I'm now realizing that I have not checked (beyond reading the label) that these products are not cross contaminated by being made in facility with gluten, soy, etc. So I've spent more time online, and discovered that some Whole Foods olive oil, beans, rice, etc may be possibly CC'd!!!! And now I'm not even sure I can trust my Trader Joe's nuts...some of them have an allergy warning and some don't....does that mean the ones without the allergy warning are not made in facility with any of the top 8? I mean, I really don't know the answers to these questions....And not only is this frustrating b/c I just spent a whole bunch of money buying these products, but I've been using them for months, and b/c my symptoms are so vague and I don't know when I've glutened myself, it's very likely I have still been getting exposed. Ugh!!!!!!!!!!!

And my marriage is starting to suffer. My husband feels frustrated (and understandably so) about this situation, and me asking him to wash his hands after eating and telling him I can't kiss him is not helping. And he buys stuff at the store that we don't know is gluten-free (maybe b/c I haven't been so vigilant myself--although I thought I WAS being vigilant). Yesterday he comes out of the store with some Heinz Organic ketchup, and I say "we don't know that this is gluten-free", and he just looks at me. And my heart sinks b/c I know he is resentful and frustrated. And I feel awful. And terrible. And terrified that he has had enough of me, and this, and will leave. And then we're in Whole Foods and he has decided to make some pork dish and he tells me the guy at the counter says the pork is organic, free range, no fillers, blah blah blaah and he asks me if he can get it and I say "what do you want me to say---until we know for sure that it's gluten-free we can't get it", and it kills me to have to make my husband change his meal around and limit what he can buy/eat. And then I come home and google "gluten free pork" and nothing comes up, and it's so darn frustrating to feel helpless and powerless like this. And part of me doesn't want to spend another two hours trying to find organically produced gluten-free pork (or chicken, or whatever)

It's soooooo frustrating for me b/c I want to make this as easy on my husband as possible. And it seems like the more careful I am the worse it gets for him. And maybe it's partly my fault that he continues to buy stuff at the store that we don't know is gluten-free, and that he continues to ask me if it is OK to buy pork or whatever from the meat counter, b/c I myself haven't been so good about it. But you know what, the more vigilant I am, the worse I feel emotionally. I mean, I feel totally controlled by this. I can't even find beans to eat that are not possibly cc'd!!! I mean, why is it so hard to buy beans that are not cc'd?????? And I just found out from someone that I now have to worry that my food from the grocery store may have been touched by a store employee who just ate gluten and didn't wash their hands (just another example of something I never thought of)....I have to ask that my gluten eating parents wash their hands when we leave the restaurant b/c I don't want their glutenous hands touching the inside of the car where I might touch.....I mean, this is INSANE!!! And everyday that goes by it seems like there's something else I read online that I need to be vigilant about with this. And it's tearing me apart. I'm supposed to be healing, and I keep saying this is all in the name of healing my body, but all this stress is no good for me, either.

I just want to be able to eat organic, local, whole fresh food and enjoy my life. And right now I'm not able to do that. Why is this so hard???

And when I turn to others more experienced with this, everyone has a different opinion about things. Some say eating out is OK, some say it's too risky. Some do OK with a particular product, others say that same product made them sick. Some say sharing dishwasher with gluten eaters is OK, others say no....I just don't know what to do. And the worst part is the fear I have of continuing to hurt myself with gluten and my other allergens.

Ok, I think it helped just to write this out. Even if nobody responds, in a way it felt good to vent.

Thanks in advance to anyone kind enough to answer.

[ravenwoodglass]

Your doing the right thing by trying to eat as much whole unprocessed food as you can. As to the meat, if the meat is just meat with no marinades, broths etc it is going to be safe. You don't need to worry about gluten in fresh meat any more than you do in your fresh veggies and fruits. For prepared stuff, like the Heinz ketchup try going to the companies web site. They have a list of safe stuff as does Hormel. A quick way to find a companies gluten-free list, if they have one is to put the company name and the words 'gluten free list' in a search engine. Kraft and Unilever are two companies that will clearly label gluten ingredients, if you don't see it on the label it isn't there. Chances are you are doing fine with the diet if you don't have any symptoms. If you are concerned that you are a retest with Enterolab will tell you if you are still making antibodies and it might be helpful. Your whole life changes to a great extent when you are diagnosed with this disease. If your anxiety does not resolve soon it can be helpful to see a counselor.

[Skylark]

Take a deep breath. Relax. You have gone way overboard and this degree of obsession is only hurting you. You need to talk to a nutritionist and probably a counselor. You also need to re-engage your common sense. It will help.

You can kiss your husband; just don't kiss him while he's drinking a beer. If he had something with gluten, you might wait an hour or two and ask him to wash any crumbs off his face and brush his teeth. You can shop at the store without worrying about employees touching things. Don't you wash your produce anyway? There is no need to drive your husband and family nuts with the hand-washing, car, and everything else. Wash your own hands before you eat, and keep gluten-containing baked goods and flour out of your kitchen. There have been a lot of studies on gluten tolerance in celiacs, and tiny amounts of gluten do not tend to cause villous damage. Some celiacs are very sensitive and have symptoms with any gluten, but it sounds like you are not one of those people.

If you're eating organic, whole foods you're in great shape. Raw, unprocessed meats are gluten-free, as are fresh veggies. It's only the processed stuff where you need to read labels. I don't know what you mean by having problems finding beans and nuts. Buy nuts in the shell, or get a brand like Blue Diamond that cleans their processing lines. If you're afraid of canned beans (I don't know why you would be) buy dried, pick through them, and wash them before you soak them. I have never heard of gluten in plain olives or olive oil.

You might check out the Clan Thompson software. It lists gluten-free processed foods so you and your husband can get a shopping list of safe brands set up before he goes to the store.

You can drive yourself mad with anecdotal reports of "I got glutened by X" on forums. People with celiac can have other food allergies and sensitivities they may or may not know about, delayed reactions, get into CC, or just plain forget they ate more than one suspicious food.

[primresp]

Take a deep breath. Relax. You have gone way overboard and this degree of obsession is only hurting you. You need to talk to a nutritionist and probably a counselor. You also need to re-engage your common sense. It will help.

You can kiss your husband; just don't kiss him while he's drinking a beer. If he had something with gluten, you might wait an hour or two and ask him to wash any crumbs off his face and brush his teeth. You can shop at the store without worrying about employees touching things. Don't you wash your produce anyway? There is no need to drive your husband and family nuts with the hand-washing, car, and everything else. Wash your own hands before you eat, and keep gluten-containing baked goods and flour out of your kitchen. There have been a lot of studies on gluten tolerance in celiacs, and tiny amounts of gluten do not tend to cause villous damage. Some celiacs are very sensitive and have symptoms with any gluten, but it sounds like you are not one of those people.

If you're eating organic, whole foods you're in great shape. Raw, unprocessed meats are gluten-free, as are fresh veggies. It's only the processed stuff where you need to read labels. I don't know what you mean by having problems finding beans and nuts. Buy nuts in the shell, or get a brand like Blue Diamond that cleans their processing lines. If you're afraid of canned beans (I don't know why you would be) buy dried, pick through them, and wash them before you soak them. I have never heard of gluten in plain olives or olive oil.

You might check out the Clan Thompson software. It lists gluten-free processed foods so you and your husband can get a shopping list of safe brands set up before he goes to the store.

You can drive yourself mad with anecdotal reports of "I got glutened by X" on forums. People with celiac can have other food allergies and sensitivities they may or may not know about, delayed reactions, get into CC, or just plain forget they ate more than one suspicious food.

Skylark, Thank you for your reply. So when you say raw unprocessed meats, does that refer to stuff I would buy from behind the counter, and the guy puts it on the scale, or meats that are already packaged and frozen? The problem with beans and nuts is that I have looked at the packaging for both, and been to companies websites, and they always seem to state that product is produced in a facility that contains gluten and they can't guarantee that product is gluten free. This has even happened with dried beans (Goya, for example). As far as the olive oil, again, it's the cc risk, not that the olive oil itself would contain gluten, but that the facility/lines where it's processed do.

And you're so right---I am driving myself mad with reports or this or that product from other people....but it's the only way, so far, that I can tell if a product is safe for me, as my symptoms are so subtle.

[GFLindsey]

You seem to be "overthinking". Naturally gluten free foods (beans, nuts, meat) are not going to have a gluten-free label because it is just not needed. When these things are processed (canned beans in chili sauce, honey-roasted nutes, deli meats) then you need to check.

Start by creating a list of your go-to grocery items. If this includes any processed items, visit company websites to find out what is safe. If you cannot figure it out, give them a call. Once you find a company that makes safe, gluten-free (fill-in-the-blank), that is your go-to item at the grocery store.

You can do it! It will get easier! You are doing a great job so far in ensuring your health.

[Jestgar]

Skylark, Thank you for your reply. So when you say raw unprocessed meats, does that refer to stuff I would buy from behind the counter, and the guy puts it on the scale, or meats that are already packaged and frozen?

both, as long as they don't have added flavors (which are probably also fine).

For now, read the label - if there are no gluten ingredients, then go for it. Don't worry about 'processed in', but do try to avoid 'shared lines'.

Ignore what people say about reacting to one product or another. It could be some other food, as was already said, it could be one batch, it could be one factory.....just ignore it and go with the label.

Tell your husband that you will stop being so obsessive once you have gotten the hang of things. It is completely overwhelming at first, and very easy to go overboard. Eventually you learn what to eat and it just becomes habit.

[katifer]

Wow what you describe is pretty much what i did 2 years ago when i found my baby and i were so sick

because of gluten.

He was described as 'failure' to thrive because he stopped growing and i had weird symptoms like my skin hurt all the time and i had chronic pain in all my joints as a 25 year old.

When we went gluten free ---i freaked out:)....cleaned the kitchen for hours, put every pan we had in a box and went and bought new stuff, etc. (please dont do that:) I called every company...etc.

What i learned is be really careful on this site because people will say different things:)-but i needed the support.

i wouldnt kiss my husband, would make him wash his hands before touching our stuff -

...okay so we decided to make our house gluten free. then eventually he had a cabinet of his gluten stuff:) He doesnt kiss me immediately after eating bread etc but will after brushing his teeth or a while after lunch and he has drank a bunch of water.

i have never gotten sick again living in our house. randomly at a restaurant but have decided salads are what i have for now. Seriously i thought i was losing my mind and my Dr. and nutritionist were very helpful and just kept telling me that my fear was worse for my body than actually the gluten:) We are gluten, dairy, egg, and sugar free and try to be soy free. There are tons of celiacs that have blogs with wonderful recipes-yet very few that keep out all the things we avoid. (but i substitute in things for what we cant have)

We eat meat/fish , fresh veggies, and fruit, and have learned to bake and find so gluten free stuff that isnt sweetened with sugar. Do you use energyfoods egg replacer...it gives you soo many more options to be able to use a binder. Anyway you can write me if you want some lists of websites/or food lists we are currently using. Tonight i will be praying for you, your marriage, and peace about these things...it does get easier. God Bless.

[RESO]

I completely understand your frustration. I thought I was being very careful, checking labels and everything, but then, for example, found that a type of cheese that I used to buy on a regular basis is now labeled "contains gluten and soy". Ugh.

However, as some of the other posters have stated, certain foods, such as raw, unprocessed fruits, vegetables and meats, are naturally gluten free. Ketchup and mustard are also SAFE. There are a couple of companies that I support when I can, because they are vigilant about labeling, so I will go out of my way to buy their products. Kraft, Hormel, and Con-Agra are the ones I know about. If wheat, rye, barley or oats are not listed on the label, it's safe. The way I look at it, there's enough stuff we can't eat, we don't need to be told that stuff we CAN eat contains gluten. As some on this forum have stated previously, a gluten-free version of SNOPES would be extremely helpful.

You can do this! :-)

[Kim27]

Try myglutenfacts.com. It's free & they update every 90 days. The Cecelias market Grocery Guide book is also helpful as well. You can also type a specific product into Google then comma gluten free, a lot of times I've been able to find my answer quickly that way.

[psawyer]

This may help you get started. It is an old post from a fellow moderator, but the information is stll absolutely true:

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Hope this helps.