Questions On Coping In General

[josh052980]

So I've been gluten free for 8 months, and have been doing great overall. Something has been triggering my symptoms, over the last 3 weeks or so, but I'm working on eliminating suspect foods, so that shouldn't be a huge issue.

My question for you guys is, how do I get this to be the last thing on my mind, and relax again? I'm convinced that some of my symptoms are psychosomatic, that my preoccupation with how I feel is making me in fact feel even worse. That's my biggest issue, being a mind over matter thing, but I don't know how to tell myself that everything is gonna be fine when I feel s$#&ty on an almost daily basis.

Anyone have a system that works for them? I'd love to hear how you all handle it!

[Almendra]

It IS hard to forget when you don't feel just right. I try to do something fun that does not have to do with food. Something active that can get my mind off any discomfort. Many times, by the time I'm done, I feel better. There is life outside food.

Meanwhile, about 8 months into my diagnosis I was still not doing great occasionally, I started looking at things that were not food, such as hand lotion, hand soaps, or makeup/face lotions (not that you wear makeup - but if you do, it could contribute ) - anything that could cross-contaminate my food somehow.

OR... Have you been carousing with glutened women and their poisonous lipstick/Chapstick/etc.? (Sorry, speaking of makeup, have to mention this.)

[Booghead]

I know that the body lotion I use: Lubriderm has gluten in it. Almost all shampoos have gluten in it including mine. Eventually I will eliminate this from my life but for now I am just trying to eliminate all gluten foods. If you eat out a lot that could be a cause for gluten in the diet. Or if you live with gluten eating people. Its tricky. Right now I have been gluten free for about 5 days and I can tell you if I started eating gluten again I would SOL. My big thing that makes me very sick is milk. Straight milk. Doesn't hurt me when I eat cheese or yogurt. I can't tell you whats in milk I just know it makes me sick and so I haven't been drinking it for about 2 weeks. If you use any face cleaning products they could have gluten in them. I know mine don't list ingredients so I have to google or call manufacturers. I found hand soap has gluten in it. And airborne flour can make so people sick.

[aeraen]

I would really try to get it out of your head that its all in your head

Honestly, most of us have heard that for years, often before diagnosis and many even after. And it often delays diagnosis severely.

Let's face it, even the best of us get complacent, and I'll bet at 8 months in you are just begining to think you've got it down pat. Maybe some processed food that you've been eating for 6 months (and no longer check the label on) now has changed its formula and added an ingredient that you didn't know about. Or, your body is now more sensitive and is reacting to something that it didn't react to before. Both of these have happened to me.

Just don't do to yourself what many people do to all of us... think that "its all in your head."

[Lisa]

Lubriderm has gluten in it.

Not too sure about that. I would not use the Lubriderm with Oats, but the other products are gluten free.

Open Original Shared Link

[Marilyn R]

So I've been gluten free for 8 months, and have been doing great overall. Something has been triggering my symptoms, over the last 3 weeks or so, but I'm working on eliminating suspect foods, so that shouldn't be a huge issue.

My question for you guys is, how do I get this to be the last thing on my mind, and relax again? I'm convinced that some of my symptoms are psychosomatic, that my preoccupation with how I feel is making me in fact feel even worse. That's my biggest issue, being a mind over matter thing, but I don't know how to tell myself that everything is gonna be fine when I feel s$#&ty on an almost daily basis.

Anyone have a system that works for them? I'd love to hear how you all handle it!

What you're going through is normal. At the 6-8 month spot after going gluten-free I developed more food intolerances, and felt very anxious, because it seemed like everything I ate made me sick.

I asked my Gastro for a prescription for an anti-anxiety medication. He gave me an rx for .5 mg Xanax. I'd take 1/2 of a pill when I felt over anxious and worried if I was going to be sick the next day, and if I called in sick again, would I get fired... Then the "What if's" would start. (What if I lose my job? What if I lose my insurance? What if...)

The rx was for 15 pills. I have about 8 of them left over a year later, but they really helped me get through that rough time.

And just so you know, food focus is normal. A new specialty grocery store opened up here last week. The newspaper reported that people stood in line an hour before they opened. The parking lot is still jammed, four days later. My girlfriend said she talked to someone who spent 2 1/2 hours in the new grocery store. I haven't been there yet, even though it's only a few blocks away.

The other thing that helped me get through that rough time was veggies and meat, and using root veggies or squash as a starch. Do you like to cook? Fresh or canned fruits and rice never made me sick either, but quinoa smacked me bad, as did dairy, soy and corn. I've added dairy back into my menu successfully. I may try Tamari sauce again and attempt corn, but the quinoa was so wicked to me that I'll never try it again.

I hope this helps. Oh, I also went for skin prick testing at an Allergist's, and that was enlightening.

[Monael]

One thing that helped me was focusing on the foods I COULD eat. There are so many delicious things I can eat that it helped me deal with what I can't. Try to focus on that. And also how much better you feel going gluten free. That also helped me immensely. I feel so much better that I am honestly afraid of eating gluten now.

[sandsurfgirl]

This mind over matter thing is my big revelation in life right now. I ended up hospitalized recently with low aldosterone- the hormone that regulates kidney function and salt in your body. It made me very sick and it took days to get labs back and figure out what was wrong. I spent 10 days in the hospital and 7 of those were waiting on lab results and just keeping me stable.

I got home and started improving and then my kids and I got a terrible flu with stomach symptoms, cough, weakness etc. Because I was already weakened, I got hit the worst in my family. I'm getting way better 3 weeks later, but I'm still waking up nauseous.

I've been reading a lot about positive thinking and how your mind affects your health. I'm a Christian and I've been reading Biblical support for this as well. But it's a job to actually do it. To remain positive when you don't feel well is something you have to work at sometimes all day long. In the mornings I feel the sickest and it tends to get better by about noon, but I'm a wreck until noon because I'm so upset about feeling sick.

After all we've been through with celiac we can have some emotional trauma. I know that I overreact to feeling sick because I was sick for so long before diagnosis. I know that my emotions about illness are way over the top compared to what I'm really feeling. And now that I went through this hospital thing (which was really scary because I was collapsing and my blood pressure was plummeting) my emotions are out of whack again.

The way I pull myself out of it is lots of prayer, lots of reading about postive thinking and about having faith that you will be healed and just forcing myself to do life. Get up and get some things done and not lay around in bed being miserable. I read that when you feel down you can say a postive affirmation 20 or more times and it does work. Sometimes I just say "I am filled with the love of God" or something like that.

What I'm learning is that you must work at controlling your thoughts and you must not only deny the sadness and negative thoughts, but you have to fill your head with replacements. I'm a work in progress, but just 3 weeks ago I was suffering from horrible anxiety and panic attacks and now they are nearly gone. I had depression from this latest health challenge and positive thinking and prayer have made it so much better. It's not totally gone yet, but it is way better and I'm not filled with anxiety all day long.

I love this website. It's extensive and I haven't read all of it, but everything I've read has helped me so much. Open Original Shared Link His work on fighting depression has helped me so much. I started reading it about a week ago and it has made a big difference in just a few days.

I hope this helps. We need to also keep lifting each other up here on this board. Come here for support because you'll always get it.

[annegirl]

Ok. I knew that I had seen a thread that was really encouraging a while back. I searched and searched and came up with it!

This thread was encouraging to me, particularly the quote I inserted below. You're doing the best that you can to stay away from gluten. I think you probably need to cut yourself a bit of a break and try and focus on something else. Whenever I get a little down about stuff or want a nice treat I get myself a nice juicy rib eye and grill it up and serve it with some mashed potatoes. Pour yourself a nice glass of wine and toast to yourself for having the self control to make it 8 months in! You're doing great.

Continuing to feel bad when you're putting this much work into it is a bummer. You know the drill keep a food journal, elimination diet blah blah blah. Hope this all helps!

It is a struggle isn't it? But "anything worth doing, is worth doing right." I get "freak outs" as I call them when going out to eat still even after 2 years gluten free and I probably will forever. BUT the one thing my hubby tells me is that if, IF I get glutened, it will pass. Yes it sucks and it's horrible, but it does pass and at that point you have to give yourself credit for trying and doing the very best you can not get glutened, but if you do, it will pass.

[Meatballman]

It takes time.Its not in your head I used to think the same because for the longest time doctors suggested that to me.It gets better.Little by little you will become more comfotable as you heal.But trust me you are not abnormal.You will get to a point when you realize wow Im having more good days than bad and your mind will start to clear.

[DerpTyler]

I know that the body lotion I use: Lubriderm has gluten in it. Almost all shampoos have gluten in it including mine. Eventually I will eliminate this from my life but for now I am just trying to eliminate all gluten foods. If you eat out a lot that could be a cause for gluten in the diet. Or if you live with gluten eating people. Its tricky. Right now I have been gluten free for about 5 days and I can tell you if I started eating gluten again I would SOL. My big thing that makes me very sick is milk. Straight milk. Doesn't hurt me when I eat cheese or yogurt. I can't tell you whats in milk I just know it makes me sick and so I haven't been drinking it for about 2 weeks. If you use any face cleaning products they could have gluten in them. I know mine don't list ingredients so I have to google or call manufacturers. I found hand soap has gluten in it. And airborne flour can make so people sick.

Waitttt, so your saying that gluten in your shampoo can somehow get into your digestive system and make you sick??,

[Lisa]

Waitttt, so your saying that gluten in your shampoo can somehow get into your digestive system and make you sick??,

While I don't agree with everything in the above post, YES gluten from shampoo can get into your mouth while in the shower. It's easy to remove that aspect, so it's no longer a possibility when you get ill from other sources.

[Jestgar]

I know that the body lotion I use: Lubriderm has gluten in it.

I'm pretty sure Lubriderm is just chemicals. What's in the ingredient list that makes you think it must have gluten?

[kareng]

As I started looking around, not as many lotions & shampoos have gluten as I originally thought. 10-15 years ago? Every beauty product had wheat germ oil. We have had trends of aloe, oatmeal, jojoba, etc. I think wheat is not the trend right now. It's still in beauty products, so we need to look.

[sandsurfgirl]

Waitttt, so your saying that gluten in your shampoo can somehow get into your digestive system and make you sick??,

It's not that easy to get off your hands and if it's in your hand soap then you're just rubbing it in. You make your breakfast, eat something with your fingers... you get the idea.

Shampoo and conditioner run all over your face in the shower and get everywhere. I figure it's an easy thing to change to protect yourself.

[Lisa]

It's not that easy to get off your hands and if it's in your hand soap then you're just rubbing it in.

If you handle gluten, bread for example, wash you hands well, so you don't put you hands near you face (meaning your MOUTH). You can not "rub it in".

[kareng]

I think what we are all trying to say is: lotion and moisturizers in soap are meant to stick to your skin. So we rub it on well & it sticks, especially in the nooks and crannies. Most moisturizers are really barriers with some things that absorb. Gluten is too big to fit but if it's in the moisturizer, it will stick. Then it's hard to get off before putting fingers on food or in mouths. Hair products are also meant to stick.

Easiest just to avoid gluten in these products. There are more without gluten these days than with it.

[misslexi]

Open Original Shared Link

maybe it comes from stuff like that? no clue if its true or not, but I'd rather not risk it. Personally I feel better knowing that none of my toiletries or beauty products have gluten in them, just in case.

If you live in a home where the other members of your family/household still eat gluten foods...you have no idea how much contamination you're still dealing with. I've been gluten free for 2 years now, and until this summer I lived with roommates that ate wheat. We had all our own foods, we had a dishwasher, I used my own pots, I avoided wooden utensils, no toaster sharing...and I was still getting cross contamination in what I ate. And I was being extremely careful. I didn't even realize how much crappier it was making me feel until I moved into an apartment alone and declared my home gluten free. No wheat is allowed in the door! Honestly, I just started feeling better overall because there is no risk of crumbs or anything like that anymore.

Speaking honestly, I'm not sure its possible to ever really get it completely off your mind. It is something people who don't know anyone with a gluten intolerance just don't get. And I don't know about anyone else, but it upsets me alot sometimes how people act about it. It is really difficult not to let it define you sometimes, at least when there are others around. We just have to learn to accept it as being part of who we are (something I'm still working on) and doing our best to become healthy again. It is really hard when you can't even get the motivation up to do something to feel better because you're just feeling so sick all the time. I'm at that spot right now and I need to get over it and get to work.

I think what would help the most is making sure you have someone in your life you can just vent to. Even if you're just writing in a journal to get all your frustration and anger out. Release the negativity and all that. It can be really hard to break out of feeling sorry for yourself, and it might come back sometimes. You just need to surround yourself with positive and supportive people.

[sandsurfgirl]

I know that the body lotion I use: Lubriderm has gluten in it. Almost all shampoos have gluten in it including mine. Eventually I will eliminate this from my life but for now I am just trying to eliminate all gluten foods. If you eat out a lot that could be a cause for gluten in the diet. Or if you live with gluten eating people. Its tricky. Right now I have been gluten free for about 5 days and I can tell you if I started eating gluten again I would SOL. My big thing that makes me very sick is milk. Straight milk. Doesn't hurt me when I eat cheese or yogurt. I can't tell you whats in milk I just know it makes me sick and so I haven't been drinking it for about 2 weeks. If you use any face cleaning products they could have gluten in them. I know mine don't list ingredients so I have to google or call manufacturers. I found hand soap has gluten in it. And airborne flour can make so people sick.

Lubriderm is gluten free, the regular one anyway. What makes you think there is gluten in it?

[Lisa]

Open Original Shared Link

maybe it comes from stuff like that? no clue if its true or not, but I'd rather not risk it. Personally I feel better knowing that none of my toiletries or beauty products have gluten in them, just in case.

Yes, you could have a topical response to gluten if you have an allergy to gluten. With Celiac Disease, it must be ingested.

[captaincrab55]

Yes, you could have a topical response to gluten if you have an allergy to gluten. With Celiac Disease, it must be ingested.

How about with DH ???

[sandsurfgirl]

If you handle gluten, bread for example, wash you hands well, so you don't put you hands near you face (meaning your MOUTH). You can not "rub it in".

You can't rub lotion into your skin????? The last time I checked you put white lotion on your skin. You rub and rub and rub and poof, it goes into your skin and the white color is gone. Or maybe I forgot how lotion works? How on earth can you say that you can't rub lotion into your skin? That's bizarre.

I NEVER said you can rub gluten from bread into your skin. That's ridiculous.

You think that if you put lotion containing wheat on your hands that gluten just disappears magically? It stays on your hands just like it stays on your plastic and wooden utensils. Then if you use soap with wheat in it, you didn't wash off that gluten, you added to it.

Then you touch your food and that gluten from your products gets on your food. In the shower the shampoo and conditioner run all over your face and it's pretty easy to get into your mouth by accident.

Do what you want. Slather yourself in wheat but don't come whining when you have lingering symptoms and you can't figure out why. I spent two hours reading labels in a beauty supply when I first went gluten free to get a list of hair products that I could use. The majority of salon quality product was full of wheat in one form or other and often it's in the form of wheat germ oil and wheat proteins. I've seen wheat ingredients in hand sanitizer. It is in a lot of products. But there are products that don't have it in there and why not protect yourself?

[kareng]

I think she meant it can't get into your blood stream. I think I have seen that the gluten molecule is too large. It may go thru that top dry layer of skin making it next to impossible to wash off 30 minutes later when eating. That's why its not a good idea to get a gluteny lotion. I guess you could get someone else to rub it on your scaly heels or elbows. But why. when there are lots of gluten-free options right now.

There are a few things that can go all the way thru to your blood stream like, for example, a niotine patch. The nicotine can go thru but not the cloth patch.

[sandsurfgirl]

I think she meant it can't get into your blood stream. I think I have seen that the gluten molecule is too large. It may go thru that top dry layer of skin making it next to impossible to wash off 30 minutes later when eating. That's why its not a good idea to get a gluteny lotion. I guess you could get someone else to rub it on your scaly heels or elbows. But why. when there are lots of gluten-free options right now.

There are a few things that can go all the way thru to your blood stream like, for example, a niotine patch. The nicotine can go thru but not the cloth patch.

This debate always gets wacky and I'm sorry we hijacked the original thread.

I don't think it gets into your blood stream, but what you said is what I'm getting at. It's going to be hard to get off your skin, especially if you then wash with gluteny soap. People have to make their own choice but over the years I've been on here I've seen more than one person argue that soaps, etc. don't matter and then that same person is posting threads about how they can't figure out why they're still sick.

[kareng]

This debate always gets wacky and I'm sorry we hijacked the original thread.

I don't think it gets into your blood stream, but what you said is what I'm getting at. It's going to be hard to get off your skin, especially if you then wash with gluteny soap. People have to make their own choice but over the years I've been on here I've seen more than one person argue that soaps, etc. don't matter and then that same person is posting threads about how they can't figure out why they're still sick.

I think you & Lisa just misunderstood each other. That's all I was trying to clear up.