Having A Hard Time Adjusting

[LenaHyena]

I'll start this by saying that I have not been officially diagnosed. I've pretty much gotten exhausted with doctors poking me and proding me and not giving me any definite answers. My family doctor tested me after several months of being horribly ill to discover that I was terribly malnourished (despite eating and having gained 23 pounds in 3 months) and had low blood counts and a positive ANA test for an autoimmune disease. He put me on a prescription vitamin but after I got a negative ENA a week later decided to wait a few months to run the tests again. Meanwhile I continued to suffer. My loving partner (in cahoots with his father who is an infectious disease special ist) did some research and we tried eliminating and adding things back to our diet.

Gluten seems to be the culprit, I feel better, I'm functional, I can get out of bed, I seem to be retaining at least some nutrients (the nasty body cramps I was having mostly subsided)

We've been *kinda* gluten free for about a month. I only say kinda because it seems like twice a week I'm in agony and research brings up yet another hidden source of gluten. Even when I'm eating clean I'm a little bit nauseous pretty much all of the time. When does that stop? Does it ever stop?

When will the weakness go away? I've always been strong for a woman and being unable to carry out my usual level of activity has been very discouraging. How long does it take for the body to heal?

Also, I read that most celiacs are underweight. I've always had weight problems, it seems I have to go above and beyond to lose even a fraction of the weight that other people would. It's been a life-long struggle just to maintain a moderately healthy weight for me. The sudden weight gain pretty much decimated my self-esteem. Is this just crappy genes or could the gluten be responsible?

Is it worth it to even try to eat out? Half the times I get sick is when we eat out?

I guess I'm just tired of feeling bad all of the time and I want some indication that there is actually something "good" to be reaching for here. Or is just being moderately nauseated instead of having horrible stomach cramps the best I can hope for?

Any reassurance or help would be appreciated.

[MissBonnie]

i have been gluten free for 3 months after being bedridden for 6 months prior. it does get better! i just recently got cross contaminted and spent 4 weeks in bed so please be super careful. eating out isnt an option for me at the start. hopefully later i wont be so sensative. you need to look at the posibility on lactose intolerance too because the digestive tract cnt cope at the moment. most celiacs are intolerant of that too. sometimes also soy, corn, or other things. just test yourself out. im recently of all dairy because the nausea and pain i get from it is unbearable. who would have known though if i didnt have the people on this wonderful site! from what ive read, it does get better. most people who have been as sick as we have, will be better by the 3 or 6 month mark which in the grand scheme of things is not too bad. i however am at 3 months and still unable to work through the pain. im currently having other tests done so i can keep you posted on that too. if you want to chat more or see my progress to compare to yours feel free to add me on here. just go to my profile im 22 if that helps haha

[Poppi]

For me the nausea takes 1-2 weeks of 100% purity of diet to go away after being glutened. Meaning if I get glutened by accident or at a restaurant it takes up to 2 weeks of eating only whole foods prepared myself for the nausea and muscle pain and inflammation to go away. Everyone is different though so your body may behave differently from mine.

I also had to stop drinking coffee, it makes me have very similar symptoms to a glutening. 1/2 a cup of coffee for me results in several hours of nausea and fatigue.

[Takala]

Continue to strive towards a truly gluten free diet. Sooner or later you will get one of the "aha!" days when it's obvious that you feel really better.

Be sure all vitamins and supplements are gluten free also.

You may want to lay off the eating out for awhile until you figure out what the new normal is, and what you actually can and cannot eat. Why risk cross contaminating yourself.

This disease can muck with your thyroid so of course you can be overweight, a lot of us are tending towards insulin resistance anyway, and do better on a low carb or low grain diet that is higher fat and protein. Do not try to eat like a teenaged girl on this (low fat high carb, lots of sugars and cereals, with no concept of the "vegetable") or you'll gain a lot. Do take a B complex vitamin, calcium and magnesium. Try laying off the soy, also, because soy can also affect your thyroid and a lot of us react to it.

[ravenwoodglass]

It is a fallacy that most celiacs are underweight. Unfortunately most doctors don't realize this.

It can take a bit of time to heal. Do eat as much whole unprocessed food as you can and if you have to go out to eat go to restaurants that have a gluten free menu.

It is a good idea to avoid dairy also for a bit until you are feeling better.

It does take some time to get used to the gluten free lifestyle and all we have to do to keep us safe. Make sure you have gotten seperate condiments, butter etc if others eat gluten in your home. And so change out scratched non stick pans, strainers, wooden utensils and don't bake with gluten flour for others.

Hopefully you will be feeling better soon.

[T.H.]

Okay - lemme just apologize for the long post that is likely coming. I tend to blather, heh.

1. Congratulations on figuring some of this out! I know it still sucks like a hoover vacuum to still feel crummy (I did the same after going gluten-free, too), but at least you're on the right path. You can totally do this!

2. Re: overweight. I know more celiacs now who were overweight when they were diagnosed than those who were underweight. It's funny that more of the literature says that underweight is more common. That hasn't been my experience at all. There are 5 gluten-free folks in my family now. 4 of us were overweight before going gluten-free. For me, when I start gaining weight, it's usually a sign that hidden gluten has been sneaking in somewhere.

I really don't know the explanation, but the theories that make sense to me are that 1) we overeat because our bodies are desperate for nutrients and encourage it. Overeating means that maybe we can get enough vitamins, you know? and 2) our bodies aren't getting enough calories, etc... so it slows down your metabolism as though you're in a famine. Like I said, I haven't seen evidence of this, but these two theories seemed logical to me.

3. Re: the weakness. That took a few weeks for me, I think maybe 2 months. You have to remember, if your body has had this for years, then you've been deficient in nutrients for years. Now, the body is trying to FINALLY heal YEARS of damage that has been done to every single system. Think of it like recovering from the nastiest, longest flu in existence. You'll need the same kind of recovery that you would from that. Rest, lots of fluids, take it easy, see if someone will pamper you for a bit. :-)

4. re: nausea - that is usually a good sign that something else is going on. Many Celiacs have other food issues along with the gluten. Sometimes allergies, sometimes intolerances (of which there are only 2 that can be tested for. The others, you've gotta do a food journal and eliminate). Dairy is the most common - the part of the villi that is damaged is the part that makes the enzymes to digest dairy. So most of us are slightly to hugely dairy intolerant (soy and nightshade allergies are common, too), but can often regain the ability to have dairy once we've healed. I'd second the motion to drop dairy like a hot rock. I would also keep a food journal, and maybe drop all your food to really basic sources: fruits, veggies, meat (or legumes, but check these well, as many are processed with wheat, sigh). Also, some of us don't do as well with artificial dyes, preservatives, etc... Organic may help some.

And another aspect of things, in case you were not aware. Gluten free does not mean 'zero gluten.' It's a legal term defining how much gluten can be in a 'gluten free' food. However, in the USA (wasn't sure where you were located), the law is not in effect to regulate this, so companies are pretty much on the honor system as to how much gluten their gluten free food has. Some do better, and test their products. Some don't. And some of us are more sensitive to gluten, so many of the gluten free products are often still too much gluten for us. We have to check our foods more carefully, in that case. Also, because it's not 'zero' gluten, that means it's like low calorie food: eat too much gluten-free/low cal food, and you can get too much gluten/calories. So sometimes it's a good idea to keep the specialty pastas, flours, etc... in low quantity at first, until you know what your tolerance is. :-)

5. Re: eating out. I would honestly just avoid it for a while if you are starting out. It's so easy to get zapped, and when you are still trying to heal and figure it all out, it makes it that much harder. When you've got it down, then you can go out and you'll know for sure if you had safe food at the restaurant or not, you know?

6. For me, it took me longer to start feeling better than anyone else in the family, because I not only had gluten issues, but I also turned out to be more sensitive to gluten than the rest, and have food allergies and intolerances. But with those taken care of...I finally healed. It took me over a year and a half to figure it all out, though. But it DID happen.

And what made me feel better the fastest was kind of an accident, actually. I was allergic to a couple foods that are MORE common in gluten-free food, so going gluten-free made me feel worse. I thought I had the stomach flu, so I just had fluids for a couple days, and felt wonderful. As soon as I'd start eating food, though, I'd start feeling horrible again. So I started a food journal and ended up having a kind of elimination diet that was pretty much: does this make me feel bad? No? Then I can eat it.

It was slow, but it was worth it to me to feel better, even if I was living on carrots and bell peppers for a few days, LOL. Part of the difficulty for many of us is that we DON'T get the severe hives and such from allergies, we get other symptoms. I get nausea, gut problems, insomnia, aches and pains and headaches. It's not like any allergy I ever heard of, until I talked to my allergist who was knowledgeable about food allergies and he said that's not uncommon at all (as opposed to the allergist who didn't know jack about food allergies and insisted it was all in my head ).

I know that this is not something that's okay for many people, but if, like me, you're not in a situation where losing weight is going to be dangerous, then maybe that might be something to try? I'll admit, at the very least, having a few days free of nausea was WONDERFUL. And it helped me focus myself, because when I dropped food and the nausea went away, it was a great reminder that YES, it WAS the food that was the problem. Gave me hope, you know?

Oh, a couple things? Do you have a shared household with gluten eaters, or is it all gluten free? If it's shared, here's something that helped me get my brain around gluten and how to avoid cross contaminating myself: treat it like raw meat, but raw meat that can't be cooked enough to be safe. We wash our hands after touching raw meat, do the same with gluten. We wash utensils and cutting boards and plates that touch raw meat, before they touch anything else, do the same with gluten. We wash things we touched after touching raw meat, like a drawer handle, and do the same with gluten.

Because it's awfully easy to get cc. Someone gets a loaf of bread, opens it, gets out the bread, and closes it. So now the outside of the bread package is cc'd. they open the cupboard, without washing their hands, and now the handle is contaminated, too. And the shelf the bread package is on. It won't spread too far, maybe only 1-3 touches, I would think. But if we're not thinking about it, how often might we open a cupboard and grab a plate, without thinking that we might need to wash the handle, or not touch the plate with the same hand that touched the handle?

Some people aren't that sensitive, admittedly, but with 2 who ARE that sensitive in my family, we ended up just going gluten fee in the home. I know many get a gluten free shelf/cupboard, so that they know it's safe there and no gluten has touched their stuff.

Another way of thinking that helps is: if it can get in your mouth, it needs to be gluten free. Lotion on your hands if you ever lick your fingers. Shampoo if it ever drips down your face and into your mouth as you rinse. Lips if you ever kiss them need to be free from gluteny chapstick or have brushed teeth since last eating gluten (yeah, that one kinda sucks, but not as much as kissing making you nauseous, LOL).

It's overwhelming at first, I know. God, do I know. I wanted to cry (okay, did cry a number of times, as I recall), and it was so much worse when you felt crummy every day. Or if you got better, and finally thought things were going well, and then get gluten accidentally and it all crashes down. The worst is being careful, and eating your special food and not the awesome food someone else is having, and you get sick anyway!

And I mention this not as a negative thing, but just because you should know it WILL happen. It absolutely will, and it'll suck, but you can get through it. AND the further you go, the less often it's going to happen, until it almost never happens at all and being gluten-free feels normal and not a big deal. Like wearing glasses or using a map if we have a bad sense of direction. It's not going to be like it is for people who don't have this issue, but it stops feeling so crazy. And part of that is because we start to feel BETTER, and that makes such a difference dealing with it, it's unbelievable.

And once you've got the diet down, you can start cooking amazing foods that taste really fantastic and you still feel great eating them. They might not be the same foods, but like we eat the same foods now as we did when we were kids? Usually not. It'll be like....like a second wave of diet changes. From childhood diet to adult diet, and now from adult diet to healthy adult diet.

It's been a long, hard road to get healthy, but now that I am? Seriously, I can't even express how much of a difference it has made. I can play with my kids again, I can ENJOY playing with them again, and interacting with people, and being able to think because my brain has nutrients for once AND I'm not trying to block pain or aches while getting through the day. It's worth the fight to get here.

I wish you all the best, and hope that you find the answers soon so that you can start to feel better!

shauna

[Marilyn R]

Okay - lemme just apologize for the long post that is likely coming. I tend to blather, heh.

1. Congratulations on figuring some of this out! I know it still sucks like a hoover vacuum to still feel crummy (I did the same after going gluten-free, too), but at least you're on the right path. You can totally do this!

2. Re: overweight. I know more celiacs now who were overweight when they were diagnosed than those who were underweight. It's funny that more of the literature says that underweight is more common. That hasn't been my experience at all. There are 5 gluten-free folks in my family now. 4 of us were overweight before going gluten-free. For me, when I start gaining weight, it's usually a sign that hidden gluten has been sneaking in somewhere.

I really don't know the explanation, but the theories that make sense to me are that 1) we overeat because our bodies are desperate for nutrients and encourage it. Overeating means that maybe we can get enough vitamins, you know? and 2) our bodies aren't getting enough calories, etc... so it slows down your metabolism as though you're in a famine. Like I said, I haven't seen evidence of this, but these two theories seemed logical to me.

3. Re: the weakness. That took a few weeks for me, I think maybe 2 months. You have to remember, if your body has had this for years, then you've been deficient in nutrients for years. Now, the body is trying to FINALLY heal YEARS of damage that has been done to every single system. Think of it like recovering from the nastiest, longest flu in existence. You'll need the same kind of recovery that you would from that. Rest, lots of fluids, take it easy, see if someone will pamper you for a bit. :-)

4. re: nausea - that is usually a good sign that something else is going on. Many Celiacs have other food issues along with the gluten. Sometimes allergies, sometimes intolerances (of which there are only 2 that can be tested for. The others, you've gotta do a food journal and eliminate). Dairy is the most common - the part of the villi that is damaged is the part that makes the enzymes to digest dairy. So most of us are slightly to hugely dairy intolerant (soy and nightshade allergies are common, too), but can often regain the ability to have dairy once we've healed. I'd second the motion to drop dairy like a hot rock. I would also keep a food journal, and maybe drop all your food to really basic sources: fruits, veggies, meat (or legumes, but check these well, as many are processed with wheat, sigh). Also, some of us don't do as well with artificial dyes, preservatives, etc... Organic may help some.

And another aspect of things, in case you were not aware. Gluten free does not mean 'zero gluten.' It's a legal term defining how much gluten can be in a 'gluten free' food. However, in the USA (wasn't sure where you were located), the law is not in effect to regulate this, so companies are pretty much on the honor system as to how much gluten their gluten free food has. Some do better, and test their products. Some don't. And some of us are more sensitive to gluten, so many of the gluten free products are often still too much gluten for us. We have to check our foods more carefully, in that case. Also, because it's not 'zero' gluten, that means it's like low calorie food: eat too much gluten-free/low cal food, and you can get too much gluten/calories. So sometimes it's a good idea to keep the specialty pastas, flours, etc... in low quantity at first, until you know what your tolerance is. :-)

5. Re: eating out. I would honestly just avoid it for a while if you are starting out. It's so easy to get zapped, and when you are still trying to heal and figure it all out, it makes it that much harder. When you've got it down, then you can go out and you'll know for sure if you had safe food at the restaurant or not, you know?

6. For me, it took me longer to start feeling better than anyone else in the family, because I not only had gluten issues, but I also turned out to be more sensitive to gluten than the rest, and have food allergies and intolerances. But with those taken care of...I finally healed. It took me over a year and a half to figure it all out, though. But it DID happen.

And what made me feel better the fastest was kind of an accident, actually. I was allergic to a couple foods that are MORE common in gluten-free food, so going gluten-free made me feel worse. I thought I had the stomach flu, so I just had fluids for a couple days, and felt wonderful. As soon as I'd start eating food, though, I'd start feeling horrible again. So I started a food journal and ended up having a kind of elimination diet that was pretty much: does this make me feel bad? No? Then I can eat it.

It was slow, but it was worth it to me to feel better, even if I was living on carrots and bell peppers for a few days, LOL. Part of the difficulty for many of us is that we DON'T get the severe hives and such from allergies, we get other symptoms. I get nausea, gut problems, insomnia, aches and pains and headaches. It's not like any allergy I ever heard of, until I talked to my allergist who was knowledgeable about food allergies and he said that's not uncommon at all (as opposed to the allergist who didn't know jack about food allergies and insisted it was all in my head ).

I know that this is not something that's okay for many people, but if, like me, you're not in a situation where losing weight is going to be dangerous, then maybe that might be something to try? I'll admit, at the very least, having a few days free of nausea was WONDERFUL. And it helped me focus myself, because when I dropped food and the nausea went away, it was a great reminder that YES, it WAS the food that was the problem. Gave me hope, you know?

Oh, a couple things? Do you have a shared household with gluten eaters, or is it all gluten free? If it's shared, here's something that helped me get my brain around gluten and how to avoid cross contaminating myself: treat it like raw meat, but raw meat that can't be cooked enough to be safe. We wash our hands after touching raw meat, do the same with gluten. We wash utensils and cutting boards and plates that touch raw meat, before they touch anything else, do the same with gluten. We wash things we touched after touching raw meat, like a drawer handle, and do the same with gluten.

Because it's awfully easy to get cc. Someone gets a loaf of bread, opens it, gets out the bread, and closes it. So now the outside of the bread package is cc'd. they open the cupboard, without washing their hands, and now the handle is contaminated, too. And the shelf the bread package is on. It won't spread too far, maybe only 1-3 touches, I would think. But if we're not thinking about it, how often might we open a cupboard and grab a plate, without thinking that we might need to wash the handle, or not touch the plate with the same hand that touched the handle?

Some people aren't that sensitive, admittedly, but with 2 who ARE that sensitive in my family, we ended up just going gluten fee in the home. I know many get a gluten free shelf/cupboard, so that they know it's safe there and no gluten has touched their stuff.

Another way of thinking that helps is: if it can get in your mouth, it needs to be gluten free. Lotion on your hands if you ever lick your fingers. Shampoo if it ever drips down your face and into your mouth as you rinse. Lips if you ever kiss them need to be free from gluteny chapstick or have brushed teeth since last eating gluten (yeah, that one kinda sucks, but not as much as kissing making you nauseous, LOL).

It's overwhelming at first, I know. God, do I know. I wanted to cry (okay, did cry a number of times, as I recall), and it was so much worse when you felt crummy every day. Or if you got better, and finally thought things were going well, and then get gluten accidentally and it all crashes down. The worst is being careful, and eating your special food and not the awesome food someone else is having, and you get sick anyway!

And I mention this not as a negative thing, but just because you should know it WILL happen. It absolutely will, and it'll suck, but you can get through it. AND the further you go, the less often it's going to happen, until it almost never happens at all and being gluten-free feels normal and not a big deal. Like wearing glasses or using a map if we have a bad sense of direction. It's not going to be like it is for people who don't have this issue, but it stops feeling so crazy. And part of that is because we start to feel BETTER, and that makes such a difference dealing with it, it's unbelievable.

And once you've got the diet down, you can start cooking amazing foods that taste really fantastic and you still feel great eating them. They might not be the same foods, but like we eat the same foods now as we did when we were kids? Usually not. It'll be like....like a second wave of diet changes. From childhood diet to adult diet, and now from adult diet to healthy adult diet.

It's been a long, hard road to get healthy, but now that I am? Seriously, I can't even express how much of a difference it has made. I can play with my kids again, I can ENJOY playing with them again, and interacting with people, and being able to think because my brain has nutrients for once AND I'm not trying to block pain or aches while getting through the day. It's worth the fight to get here.

I wish you all the best, and hope that you find the answers soon so that you can start to feel better!

shauna

Great post, shauna! I really admire your writing, and you did not blather.

[sandsurfgirl]

If going gluten free made you feel better then you have celiac disease in my opinion. You have all the symptoms, including being malnourished but overweight. Being unable to lose weight IS a celiac symptom. The celiac doc I went to explained that your body goes into famine mode and hangs onto every calorie it can get.

I've been gluten free for a year and 4 months now and I still struggle to lose weight no matter how clean I eat and how hard I work out. I'm hoping that will clear up. I have lost weight over the past year, but not nearly enough considering my diet and workouts.

It took me a full SIX months before I had ONE measly symptom free day. I did get better right away when I went gluten free, but full recovery where I felt good the majority of the time was six months.

If I were you, I would tell people that you got diagnosed by bloodwork. There are jerks out there who don't take you seriously and can make you miserable if you tell them you diagnosed by elimination diet. Or just be vague and say the doctor did a bunch of testing. Elimination diet is technically testing.

Hang in there! It gets way better, but the healing process is hard. Think about all that damage your body has to work so hard to heal. It takes a lot of energy to fix that mess in there. Don't worry about working out and being strong now. It's time to rest and heal. All that will come later. I PROMISE!

[sandsurfgirl]

I 100% agree about lotions, soaps and shampoos. I did not start really improving until I de-glutened my bathroom. Soap and lotions stays on your hands and shampoo drips down your face in the shower.

One of the nastiest glutenings I got was when I put a leave in conditioner by Redken in my hair in a dumb blonde moment, forgetting it was full of like 3 kinds of wheat. I was running my hands absent mindedly through my hair while I was working. Then I started eating gluten free crackers and I got sick all afternoon. Dizzy, anxiety attacks, gut pain, diarrhea, the works.

I know, gross, I should've washed my hands first, but I forgot and it did a number on me.

Biolage and Enjoy have lots of products without gluten. They won't say gluten free on the bottle, but the gluten ingredients always say wheat this or that. Tocpherols are safe according the Canadian Celiac Association.

I've never found glute in Bath and Body Works soap and lotions, but always read to be sure before you buy.

For cheap soaps, you can use Suave.