Does It Get Better?

[StrongerToday]

Just having one of those days... started out good, but then had a little "D" (but I feel pretty good). So now I'm looking at my foods logs... was it the small amount of steak I had for dinner? Tuna salad for lunch? I go back to my food logs and some things seem to have given me problems some days, and not on others. Sometimes I feel sure no matter what I eat will come back to haunt me, although I've been very strict on what I eat.

Overall I am feeling much better. I'm currently under some stress (daughter's ill, very busy at work, holidays) so I'm sure that's not helping.

But does it end? The anxiety about will I feel good tomorrow? Will this food give me problems? Can I ever have a piece of cheese??? Am I going to always be this paranoid? Do I need therapy (some days I think yes, some days I think no) - and if I do when do I fit that in?

I don't know who else to ask, so I ask those who have been there before me... I try to be strong, but some days are not as easy as others!

[traveljunkie]

Yes, the anxiety will begin to fade...for me it has...slowly. Whenever I get glutened I have diarrhea that can last a few days. I get very anxious about going out. But I'm starting to get confident. We have even booked a holiday to Hawaii this march.

I find that since I've become gluten intolerant, other foods bother me as well. Like cheese..some days I can eat it safely and other times, I'll have a reaction. By rotating your foods every 3 or 4 days should help, as well!

I do think us "gluten intolerants" can be paranoid about every little stomach pain or bout of diarrhea. My hubby(who is not gluten sensitive) often gets diarrhea just from stress or eating something greasy. Or it could be a bug. We have to realise we'll get diarrhea time to time, and it may have nothing to due with gluten.

So relax, and remind yoursel that your healing, and it will take time!

[Irishjoe]

Just having one of those days... started out good, but then had a little "D" (but I feel pretty good). So now I'm looking at my foods logs... was it the small amount of steak I had for dinner? Tuna salad for lunch? I go back to my food logs and some things seem to have given me problems some days, and not on others. Sometimes I feel sure no matter what I eat will come back to haunt me, although I've been very strict on what I eat.

Overall I am feeling much better. I'm currently under some stress (daughter's ill, very busy at work, holidays) so I'm sure that's not helping.

But does it end? The anxiety about will I feel good tomorrow? Will this food give me problems? Can I ever have a piece of cheese??? Am I going to always be this paranoid? Do I need therapy (some days I think yes, some days I think no) - and if I do when do I fit that in?

I don't know who else to ask, so I ask those who have been there before me... I try to be strong, but some days are not as easy as others!

What does steak, cheese, and/or tuna have to do with Celiac disease or gluten intolerance? I'm new to this forum and just recently finding out about Celiac and possibly tying it to my ailments. Are these foods related somehow?

[traveljunkie]

Hello Irishjoe,

People who are celiac/gluten intolerant often have other intolerances to foods, such as dairy, soy, etc. Each person is different. I think they were just going over what they ate, to see what could have caused some problems. I noticed cheese in the list, and that could be the problem for tummy troubles in some.

For some, (with healing) those foods can be gradually reintroduced into the diet.

Hope that helps. It really is a personal thing, to try amd figure what upsets you. Good luck

[jknnej]

Hi there,

I was like you with the anxiety up until about July. Unfortuantely for me, things were bad enough that I started taking Effexor. The good news is, the drug does wonders and I am now able to live without constant anxiety. Mine was so bad I would barely leave the house and I was eating almost nothing because i was afraid it would make me sick.

talk to your dr. about it. I don't recommend anti-depressants to anyone because it is a very personal and individual decision, but for me the very small dose I take does wonders.

I forgot to add: a lot of my physical symptoms disappeared after taking the Effexor. I used to get nauseated, I had a tremor, I was dizzy, hearing my heartbeat, etc. All of it went away so I guess it was the anxiety.

[CaliGirl]

I don't know if this works for everyone, but it worked for me, so it's worth a try. I was having chest pains, anxiety, depression, etc. to the point that I was toying with the idea of taking anit-depressents. My reactions weren't as severe as jknnej, but they were getting increasingly difficult to live with. My dad sent me some very high-quality vitamins, and I noticed a big difference. In my un-informed, uneducated opinion, I think I was vitamin B deficient, which was causing alot of my symptoms. Try taking some good vitamins--at worst, it certainly won't hurt, and at best, it could help your anxiety like it did for me.

[LauraZ]

I don't know if this works for everyone, but it worked for me, so it's worth a try. I was having chest pains, anxiety, depression, etc. to the point that I was toying with the idea of taking anit-depressents. My reactions weren't as severe as jknnej, but they were getting increasingly difficult to live with. My dad sent me some very high-quality vitamins, and I noticed a big difference. In my un-informed, uneducated opinion, I think I was vitamin B deficient, which was causing alot of my symptoms. Try taking some good vitamins--at worst, it certainly won't hurt, and at best, it could help your anxiety like it did for me.

That really makes sense. Our nutritionist told us that B vitamins are depleted when your body is under stress. And when I went to buy some, the brand I bought are called "Stress Tabs."

[chad from fla]

I feel your pain! (No seriously! I do! I'm literally typing this on my laptop while I sit on the toilet!)

The thing to keep in mind is that people often talk about anxiety and paranoia as if it's an irrational reaction to something harmless. Yet there's nothing irrational about what we're going through -- and nothing "harmless" about what we fear. Most of the foods that comprise the average American diet will poison us. That's not "paranoia", that's a sane reaction to an insane set of circumstances. You know those stories you hear about emperors who had people taste their food for them to make sure it wasn't poisonous? I'm starting to sympathize!

Anyway, I have no idea when this all fades. I'm new at this myself. But I think we sometimes do a disservice to ourselves by believing that our newfound discomfort is irrational. I hate being scared all the time, but if we didn't fear dangerous things, our species wouldn't survive.

[traveljunkie]

I hear you, Chad. Today I'm having a bad day! I ate no gluten or dairy, and I'm still having diarrhea. I went over the ingredients of what I ate, and wonder what crap my body reacted to this time. I feel like selling everything, buying some land, and growing my own foods. It's just disgusting what's in our food now a days.

I do feel like we need to be "paranoid" about what we put in our bodies. We have a right to question the food industry, and not just accept what they say is healthy for us!!

Sorry to hear your having a bad day!

Charlene

[StrongerToday]

I am so glad that this group of wonderful people exists! It's so helpful to get such gems of wisdoms from everyone.... makes me feel so much more "normal" in an other wise crazy world.

Thank you!

[jknnej]

Oh yeah I forgot to add that I had a vitamin test, hormone test, thryoid test, etc. They tested me for everything before I took the anti-depressants. My dr. said finally that if all of these tests came back negative he wanted me to try the Effexor, so I did. I was there so many times he was beginning to think I was a hypochondriac!

I take B vitaims, Multivitamins, and other supplements as well. So in my case I wasn't deficient in any chemical or vitamin; it must just be an anxiety thing for me.

Taking Effexor was my absolute last resort. If you read back 6 months or so on this board you will find posts where I wrote to others asking for help for anxiety and asking for others' experiences with anti-depressants. I was very afraid to take them. They offered great help and I tried it all! There are many natural supplements you can take for depression/anxiety but unfortunately nothing worked for me.

I am so happy that I did give Effexor a try, though, because for me it was literally life changing. I still don't recommend it for anyone else but for me it was the right decision.

[lovegrov]

"What does steak, cheese, and/or tuna have to do with Celiac disease or gluten intolerance? I'm new to this forum and just recently finding out about Celiac and possibly tying it to my ailments. Are these foods related somehow?"

Don't get paranoid.

As somebody else said, some people have other intolerances, particularly dairy, but the fact is that most people with celiac disease don't. I was extremely ill -- to the point I was in the hospital for 11 days and missed 10 weeks of work -- and I never had any other food intolerances.

richard

[Idahogirl]

I've been doing this for about 7 weeks, and I am still paranoid. In fact, it has kind of increased with my awareness. My family is not gluten free, so I am always wondering if they ate a sandwich, then touched the refrigerator door and left crumbs. Or the microwave. Or the sink handle. Or if some crumbs might be in my husband's facial hair. I don't know if it is rational to be that paranoid, but it's always in the back of my mind. Did I wipe the counter enough to get rid of all crumbs? What about the knife block? Are there crumbs lurking in there?

Sometimes I question my quality of life vs. what I am really saving myself from. Are the chances of this disease doing serious harm to me bad enough to affect my quality of life the way it has (it's like this disease is controlling everything in my life!)? I wasn't that sick before, the brain fog and some bloating, but nothing debilitating. I still have the chance of getting any number of cancers or other diseases. I could be killed in a car accident tomorrow. I do a lot of things that "increase" my chances of something bad happening to me, but I don't stress over it. Like driving. I could just walk everywhere, and my chances of getting into a car accident would be decreased dramatically. But it is worth driving for me. The inconvenience of walking outweighs the risk I take by driving. Sometimes I feel like I am trying to live life in a bubble. Yes, in a bubble you are safe from things that can harm you, but what kind of life is that?

I guess I'm just venting. I'm tired of being so paranoid, and I miss my prior way of life, where I could just live and not be so self-absorbed.

Lisa

[CeliaCruz]

What has me reaching for the Xanax are those times that I get glutened accidentally and I simply NEVER figure out how. Seriously. I'm single and I live alone so I have a gluten-free kitchen that really can't be contaminated by anyone else but myself. This weekend I didn't go out for any of my meals. I stayed inside and cooked gluten-free food for myself. Yet on Sunday I started getting the runs and my face broke out. I'd almost feel "better" if I had eaten a meal at a restaurant and I could blame it on that...but I didn't. So what happened? Did someone break into my apartment and sprinkle breadcrumbs on my toothbrush? Was one of the workers at the Thai Kitchen factory eating a sandwich while he packaged my rice noodle bowl? Does God just hate me?

I hate it when I glutenize myself but at least I can usually take comfort in the fact that I've learned from my mistakes. "Okay, can't eat that again..." But when I don't have a clue what happened, I can feel myself start to go bat !@#$ crazy. I almost feel like I'm in one of those haunted house movies where you're alone in the house and you know some "thing" has entered only you don't know what it is or when it's going to attack you again.

[traveljunkie]

Hi Celiacruz,

I know how you feel, I'm experiencing the exact same thing. I noticed you mentioned thai kitchen soup bowl. I ate that for lunch as well. I immediately reacted to it. Itchy rash... bad diarrhea. I don't get it either. I think I'm probably sensitive to an ingredient in it, and will no longer eat it.(for awhile anyways) It's very frusterating, but know you're not alone in this.

Charlene

[jenvan]

Ev-

1st off--good job keeping a food log! It is also helpful to mark down your symptoms as well, then you can recognize patterns. (You may already be doing this...) As for the D...sometimes its gluten, sometimes its just a delicate digestive system being thrown off by a combo of foods, spices, stress, touch of the flu, etc. We don't need to blame every system upset on gluten necessarily. How long have you been gluten-free? Even a matter of months on the gluten-free diet is very little time for some systems. As for the anxiety--do you have a local support group you can be encouraged by? Have friends you can share with? Take time to 'nourish' yourself mentally, spiritually etc? You said you under some stress right now. That may not be the cause, but stress can cause D sometimes. It requires some discipline, but I also encourage you to dwell on positive thoughts...when you start getting anxious, picture yourself getting better and better, feeling 'normal' and calm.

Idahogirl-

Sometimes I question my quality of life vs. what I am really saving myself from. Are the chances of this disease doing serious harm to me bad enough to affect my quality of life the way it has (it's like this disease is controlling everything in my life!)?

Are you making things even more complicated? I have no way of knowing from just your post, but it definintely sounds like you are struggling hard. 7 weeks is such a short time for being gluten-free...be patient and perserve! Things will get easier... Try and keep the diet simple when you can to reduce stress and anxiety. You've probably heard truly valuable things do not come at an easy cost--things that are worth working for--require work! This diet is no different...its requires work like training for a marathon, studying for the LSAT etc. Even though at times the end is less glamorious. You have a great opportunity and you were blessed enough to be diagnosed. It could be much worse--you could be receiving a celiac diagnosis at the same time as a lymphoma one. Promise I am not trying to minimize how hard of a struggle it can be--I have been struggling hard these past few months too! I do believe part of succeeding is striving to think positively and counting our blessings even as we are yelling out in frustation. I know we can't do that in every moment, but in the moments we can, I think we should try. Hope this encourages!! And also that you have friends surrounding you who are positive and supportive too. Don't quit!

[traveljunkie]

Jen-great advice! You gave me a boost as well!!

Thanks!

Charlene

[jknnej]

You may not be getting glutened. Maybe you are allergic to another food that you don't even know about....it certainly sounds like it. Have you had a food allergy panel done? If you have then I'm confused about why you are getting sick other than maybe your digestive system is still healing and maybe the rash is due to an allergy to a product you are using on your face/body?

[Rachel--24]

Ev-

1st off--good job keeping a food log! It is also helpful to mark down your symptoms as well, then you can recognize patterns. (You may already be doing this...) As for the D...sometimes its gluten, sometimes its just a delicate digestive system being thrown off by a combo of foods, spices, stress, touch of the flu, etc. We don't need to blame every system upset on gluten necessarily. How long have you been gluten-free? Even a matter of months on the gluten-free diet is very little time for some systems. As for the anxiety--do you have a local support group you can be encouraged by? Have friends you can share with? Take time to 'nourish' yourself mentally, spiritually etc? You said you under some stress right now. That may not be the cause, but stress can cause D sometimes. It requires some discipline, but I also encourage you to dwell on positive thoughts...when you start getting anxious, picture yourself getting better and better, feeling 'normal' and calm.

Idahogirl-

Are you making things even more complicated? I have no way of knowing from just your post, but it definintely sounds like you are struggling hard. 7 weeks is such a short time for being gluten-free...be patient and perserve! Things will get easier... Try and keep the diet simple when you can to reduce stress and anxiety. You've probably heard truly valuable things do not come at an easy cost--things that are worth working for--require work! This diet is no different...its requires work like training for a marathon, studying for the LSAT etc. Even though at times the end is less glamorious. You have a great opportunity and you were blessed enough to be diagnosed. It could be much worse--you could be receiving a celiac diagnosis at the same time as a lymphoma one. Promise I am not trying to minimize how hard of a struggle it can be--I have been struggling hard these past few months too! I do believe part of succeeding is striving to think positively and counting our blessings even as we are yelling out in frustation. I know we can't do that in every moment, but in the moments we can, I think we should try. Hope this encourages!! And also that you have friends surrounding you who are positive and supportive too. Don't quit!

Great post Jen!

[CeliaCruz]

I noticed you mentioned thai kitchen soup bowl. I ate that for lunch as well. I immediately reacted to it. Itchy rash... bad diarrhea. I don't get it either.

Wow. I really didn't think it had anything to do with the Thai Kitchen products I always eat. But now that you mention it....

Thanks for the heads up!

[jenvan]

thanks guys! its seems in my life, when i start to get down and discouraged (and when i 'remember' my fibro pain every night as i get into bed!) i get reminders of how blessed i am. over thanksgiving while on vaca, i randomly watched a bit of the today show--i think that's what it was ...but they interviewed kyle maynard, a young man who was born with stunted (almost nonexistent) arms and legs. From the get-go his parents did not let him feel sorry for himself and constantly encouraged him to go after things that any other boy would. Anyway, now he is a wrestler, and amazingly, beats his opponents with two normal arms and two legs! It was another lesson to me about the control I have over my life and my attitude. Its unrealistic to be positive at every moment or to not have periods of discouragement or despair. I definitely get those also. But what a small thing I have to overcome compared to some, and what an opportunity it is to help and impact others.

Okay, no more soap box!

Article on Kyle here: Open Original Shared Link

[Idahogirl]

Idahogirl-

Are you making things even more complicated? I have no way of knowing from just your post, but it definintely sounds like you are struggling hard. 7 weeks is such a short time for being gluten-free...be patient and perserve! Things will get easier... Try and keep the diet simple when you can to reduce stress and anxiety. You've probably heard truly valuable things do not come at an easy cost--things that are worth working for--require work! This diet is no different...its requires work like training for a marathon, studying for the LSAT etc. Even though at times the end is less glamorious. You have a great opportunity and you were blessed enough to be diagnosed. It could be much worse--you could be receiving a celiac diagnosis at the same time as a lymphoma one. Promise I am not trying to minimize how hard of a struggle it can be--I have been struggling hard these past few months too! I do believe part of succeeding is striving to think positively and counting our blessings even as we are yelling out in frustation. I know we can't do that in every moment, but in the moments we can, I think we should try. Hope this encourages!! And also that you have friends surrounding you who are positive and supportive too. Don't quit!

I don't think I'm making it complicated at all. I'm trying to keep it as simple as possible, but I am a realist. I have a husband and two young boys (growing so much!) and one on the way. I am the only one gluten free. Because I don't work, I have always been very frugal and buy everything on sale. This diet is so expensive. If I were single and, say, a vegan, this diet would be a lot easier. But I have a family to feed, and I love food. Since I'm pregnant, and can't take dapsone for my DH, I am stuck on this diet until July. So there will be no giving up in my near future. But I read about how awful getting glutened is, and I think "I honestly didn't even feel that bad before". Why would I set myself up for that? I have to seriously weigh the pros and cons, just like every other decision in my life. Pros being preventing future problems, feeling better (not that I felt all that bad before), and cons being spending tons more money on food, being paranoid at restaurants and other people's houses, getting sick beyond belief every once in a while, not being able to eat 75% of what normal people can, drawing attention to myself constantly in order to educate people and make sure I don't get glutened, learning to cook from scratch (more time spent in the kitchen, less with family), etc.....

Like I said, I am a realist. And there are very real downfalls to this diet (big time). I just want to make sure that the benefits outweigh the difficulties. It just doesn't seem that the end result is as valuable to me as it is to someone who is sick all the time. But I have to give it another 7 months, so I'll have to revisit this subject then. Thank you for the encouragement, though. It is really helpful to have this site to go to and have people to talk to that are dealing with the same thing as you.

Lisa

[tarnalberry]

Like I said, I am a realist. And there are very real downfalls to this diet (big time). I just want to make sure that the benefits outweigh the difficulties. It just doesn't seem that the end result is as valuable to me as it is to someone who is sick all the time. But I have to give it another 7 months, so I'll have to revisit this subject then. Thank you for the encouragement, though. It is really helpful to have this site to go to and have people to talk to that are dealing with the same thing as you.

The "benefits" include:

1) not getting osteoporosis and not getting it earlier

2) not being as prone to anemia and other vitamin deficiencies

3) being only as likely as the rest of the population to get intestinal cancers instead of many times more likely

4) not, on average, taking 10 years off your life

If you've got DH, you've got celiac.

The diet doesn't have to be expensive, and you don't have to cook lots of separate things. There are lots and lots of naturally gluten free foods. Fruit, vegetables, beans, rice, corn, nuts, meats, eggs, dairy... And you can make almost anything from those ingredients. If you're going to pay more for a specialty item, make it pasta, that the family can share so you're not cooking separate meals - which is a waste of time/energy/money, since gluten-free food is perfectly fine as well. There are some things that may always be separate, like sandwhiches. But you don't eat sandwhiches for every meal of the day (and if ya do, it ain't a well rounded diet ;-) ). My husband, a notoriously picky eater, eats gluten-free whenever he eats with me, and only has a handful of other items that he keeps around that have gluten.

[key]

Lisa,

As Jen said, this isn't the worst thing in the world, but I can relate to how you feel. I think I have always had stomach aches on and off from gluten, but I wasn't having major problems, but for a couple of months when I found out. Before that i had had chronic yeast infections, etc. Anyway, I was having bone pain, depression, anxiety, stomach pain, nausea and bloating(terrible) and IBS symptoms. My point though is that my mom told me the other day after I had been gluttened that I should just quit the diet, that I seem sicker now then before! I know I am not. I felt great for like 4 months on the diet and then I kept getting gluten for a few months and have felt bad again. It is discouraging when no one understands. I have 3 boys and a husband. My one son has celiac and he is 21 months old. It is expensive to cook this diet for the whole family. I feel it isn't fair for them to give up foods they enjoy, such as normal cereal and bread, etc, but it is very hard cooking almost three different meals each meal at my house. Plus I am a stay at home mom and homeschool my six year old, so on days when I feel aweful it is hard.

I have two kids that have different birth defects though and I feel it is from undiagnosed celiac disease. My oldest is fine, but he had to have surgery for a fused suture in his skull when he was born(major surgery). THen my baby was born with something called Neurofibromatosis1(right now he just has birthmarks that are a sign of it) and he has celiac on top of that. Plus he is doing better with the diet, but he is still very small and I worry about his future sometimes, but I can't let it consume my life.

Anyway, I just try to adjust to this way of life and not let it get me down. I think eventually after a year or so on the diet that it will become normal to be on this diet, people will get used to us having it, etc. HOping this is the case anyway.

This is a great place to come when you are feeling down about the diet. There are others here that can relate and are struggling too.

Take care,

Monica

[StrongerToday]

I also thought the diet was expensive at first. But that was before I started a good routine and meal planning. Before my cart was filled with frozen entrees and junk food, now I rarely leave the store with more than two or three frozen things (gotta have those Smiley Fries!!) and my cart overflows with fresh fruit, veggies and good meat. And while I do sometimes have sticker shock at the grocery store - I'm sure saving a ton on not eating out!

I am a single mother of an 8 year old, so in a way it's easier for me to cook... I also just make one meal that we both eat (she thinks those Smiley Fries are for her, ha!). I do buy her "regular" bread and bagels and occasionally some chicken nuggets for when I'm having fish.

Before the "food challenges" we both ate a lot of the wrong foods - blame it on being a rushed, overtired, overworked single mom. But I *had* to change our eating habits - and now we're both healthier... I've lost almost 40 pounds and she lost a bit (and grown taller) too. I hope these better eating habits will stick with her for a long time, I truly beleive that my gluten sensitivity is from poor eating habits... while I'm sad about missing my 'old' foods - I don't miss the old me one bit! Has it taken a lot of work, planning, and venting to my best friend - you bet!! But in the long run, I have no doubt the hard work is worth it all.