The New Normal

[PamelaB]

I realize this post will not make very popular with the group. But I get frustrated reading how miserable people feel and then read what they are eating. I want to pull my hair out when I read how staying away from gluten makes someone feel so much better and yet they are careless about it, get glutened and then opine about it. 

PEOPLE if you have been diagnosed with Celiac Disease or NCGS this is the new normal. You cannot and will never be able to eat or live like you did before. You will adapt. You will create a new lifestyle. Is going out to eat more important then feeling good? Is that piece of food worth your health? While you are laying in bed miserable because you were afraid to advocate for yourself to your family and friends, they are going about their lives. 

It is not easy. I know. In fact there are days I just want to put my face into a box of donuts. I have been diagnosed with celiac disease since 2013, SIBO since 2012, I started this journey weighing 132 lbs and now can't get past 108 lbs, had my gallbladder out last week, anemia with more blood transfusions then I can count, in 2014 a GI bleed that about did me in until they found it and I could go on. My brain surgery in 2007 was easier then all of this but I am a pit bull about my diet. I only eat clean and high end. Buy my fish from a fish monger who catches it locally and cleans it right there. Live on veggies, berries, fish, chicken and some red meat but only organic. Fresh herbs and have to cook every day. Going out to eat is in the past but I would rather feel good. I don't eat at other people's houses but I do still go and bring my own food. The only processed gluten-free I eat are a bread I order from a special bakery and Synder's gluten-free pretzels. My vice is delicious wine. Having both celiac disease and SIBO is extremely limiting. There is very little to eat. I adhere to a strict SIBO diet. Yes, eating like me is very expensive but I am worth it. And so are you. If you want to feel good you have to be hyper vigilant about what you put into your body. The New Normal but so worth it!

[kareng]

First, I agree.  I get very frustrated with people who complain that they are gluten-free and some fast food place or the neighborhood BBQ glutened them.  It drives me nuts when they say that something gluten-free "glutened" them but forget to mention that their kids all have a stomach virus or they ate a soup, appetizer, meal and dessert ( I would be bloated and gassy too!).   I believe that we need to be vigilant about the food that goes in our mouths and not depend on others to understand Celiac disease. I do realize that accidents can happen, even when we are doing our best.  but those accidents should not be happening weekly or monthly.

I think that most Celiacs in the world are doing fine.  They have no reason to post on here. I think we get a skewed view of the World Of Celiac (sounds like a bad soap opera ) when we follow posts here.    I think many people who continue to struggle with the gluten-free diet or their health, came to Celiac with a lot of other issues.  We shouldn't blame every health issue, pain, pimple, gas, etc on Celiac or gluten.  Unfortunately,  "health issues" are not a "one per customer".

My "normal" life is a bit more restrictive than it used to be but certainly doable.  It takes a bit of time, months or even a year, to get your new habits and procedures down.  I think you can eat gluten-free processed foods safely.  Just as you shouldn't eat a whole bag of gluteny Oreos at once- you shouldn't eat a whole bag of gluten-free ones. 

I eat out quite successfully.  I am just limited to where I can eat.  Mostly higher end places do a better job with gluten-free food than a less expensive chain.  Some places have little to no gluten on the menu and make for a safer choice.  I have to put a bit more thought and planning into eating than the average person that can grab a sandwich or salad anywhere.  But that doesn't have to consume my life.  It wouldn't hurt my big a$$ to miss a few meals! 

As for expense - we can eat gluten-free on a tight budget.  It might not be as much fun, but it is doable.  PB, celery, carrots, frozen veggies on sale, beans, meat on sale, etc.  There are places like Aldi that have cheaper pasta. You have to be a good shopper.   It would take some effort, but many people struggle with stretching a tight food budget.  It isn't limited to gluten-free people.  You might have to save the gluten-free donuts from the gluten-free bakery for a special occasion.

Edit - meant to say this - I understand that there is a learning and re-training of habit period.  It can take a few months to make new procedures at home a habit, learn about the internet myths of "hidden gluten",  and to catch gluten in odd places - like licorice or butterscotch baking chips.

 

 

[Jmg]

1 hour ago, PamelaB said:

I realize this post will not make very popular with the group. But I get frustrated reading how miserable people feel and then read what they are eating. I want to pull my hair out when I read how staying away from gluten makes someone feel so much better and yet they are careless about it, get glutened and then opine about it.  

I think there's a wide variation in knowledge along with a portion of wishful thinking. When I first realised I had a problem I went out for a drink with a diagnosed coeliac guy to get some guidance. He was telling me that he could now drink lager as his stomach had 'healed'...

 

1 hour ago, PamelaB said:

1 hour ago, kareng said:

 

 I think that most Celiacs in the world are doing fine.  They have no reason to post on here. I think we get a skewed view of the World Of Celiac (sounds like a bad soap opera ) when we follow posts here.    I think many people who continue to struggle with the gluten-free diet or their health, came to Celiac with a lot of other issues.  We shouldn't blame every health issue, pain, pimple, gas, etc on Celiac or gluten.  Unfortunately,  "health issues" are not a "one per customer". 

It's a good point. I enjoy coming here because I've learned a lot and it's helped me put the jigsaw puzzle of symptoms together. I did take a break from it though when I wanted to try and reduce the amount that the intolerance would define my life. 

I also had a difficult time realising that so many of my problems with depression were directly related to gluten, but I also had a hard time when I discovered that just because they had gone away, didn't mean I couldn't be depressed.  I think because gluten can have such a profound and varied impact it's easy to see it behind every cough, sneeze or twitch! Something to guard against.

[Gemini]

1 hour ago, kareng said:

First, I agree.  I get very frustrated with people who complain that they are gluten-free and some fast food place or the neighborhood BBQ glutened them.  It drives me nuts when they say that something gluten-free "glutened" them but forget to mention that their kids all have a stomach virus or they ate a soup, appetizer, meal and dessert ( I would be bloated and gassy too!).   I believe that we need to be vigilant about the food that goes in our mouths and not depend on others to understand Celiac disease. I do realize that accidents can happen, even when we are doing our best.  but those accidents should not be happening weekly or monthly.

I think that most Celiacs in the world are doing fine.  They have no reason to post on here. I think we get a skewed view of the World Of Celiac (sounds like a bad soap opera ) when we follow posts here.    I think many people who continue to struggle with the gluten-free diet or their health, came to Celiac with a lot of other issues.  We shouldn't blame every health issue, pain, pimple, gas, etc on Celiac or gluten.  Unfortunately,  "health issues" are not a "one per customer".

My "normal" life is a bit more restrictive than it used to be but certainly doable.  It takes a bit of time, months or even a year, to get your new habits and procedures down.  I think you can eat gluten-free processed foods safely.  Just as you shouldn't eat a whole bag of gluteny Oreos at once- you shouldn't eat a whole bag of gluten-free ones. 

I eat out quite successfully.  I am just limited to where I can eat.  Mostly higher end places do a better job with gluten-free food than a less expensive chain.  Some places have little to no gluten on the menu and make for a safer choice.  I have to put a bit more thought and planning into eating than the average person that can grab a sandwich or salad anywhere.  But that doesn't have to consume my life.  It wouldn't hurt my big a$$ to miss a few meals! 

As for expense - we can eat gluten-free on a tight budget.  It might not be as much fun, but it is doable.  PB, celery, carrots, frozen veggies on sale, beans, meat on sale, etc.  There are places like Aldi that have cheaper pasta. You have to be a good shopper.   It would take some effort, but many people struggle with stretching a tight food budget.  It isn't limited to gluten-free people.  You might have to save the gluten-free donuts from the gluten-free bakery for a special occasion.

Edit - meant to say this - I understand that there is a learning and re-training of habit period.  It can take a few months to make new procedures at home a habit, learn about the internet myths of "hidden gluten",  and to catch gluten in odd places - like licorice or butterscotch baking chips.

 

 

This is an award winning post!    Really.....having Celiac is not a show stopper, once you get past the learning curve.  On the bright side, you will be knowledgeable about food and nutrition which is always a good thing.  You will learn you can travel successfully, while eating out for one meal a day like everyone else.  It just takes more planning and common sense about where eating safely will be a more guaranteed success.Once you have been doing this for a long while, it becomes second nature and mistakes should happen very infrequently, if at all. One of the most important things to adapting successfully is an ability to cook without resentment. It's a great feeling when you produce a gluten free version of a food you love and it comes out awesome!

Nice job, Kareng!

[manasota]

Let's not forget to hold good thoughts for those diagnosed late in life; and therefore, developed osteoporosis, lymphoma, or the dreaded assortment of autoimmune diseases as a direct result of having undiagnosed Celiac.  Also, we must remember those few unfortunate Celiacs who are refractory.  All of these people may enjoy posting here even though they are gluten free but still having problems for which they seek support.

I rejoice at the hopeful thought that "most Celiacs in the world are doing fine"; but do not want to forget those that are not.

[Gemini]

19 minutes ago, Jmg said:

I also had a difficult time realising that so many of my problems with depression were directly related to gluten, but I also had a hard time when I discovered that just because they had gone away, didn't mean I couldn't be depressed.  I think because gluten can have such a profound and varied impact it's easy to see it behind every cough, sneeze or twitch! Something to guard against.

This is so true.  While gluten can directly cause severe depression, that should improve with healing on the gluten-free diet. However, life can throw us curve balls which may make us depressed also. That doesn't mean you are unknowingly ingesting gluten or not healing.  It can be so tough to figure out sometimes.

[Gemini]

2 minutes ago, manasota said:

Let's not forget to hold good thoughts for those diagnosed late in life; and therefore, developed osteoporosis, lymphoma, or the dreaded assortment of autoimmune diseases as a direct result of having undiagnosed Celiac.  Also, we must remember those few unfortunate Celiacs who are refractory.  All of these people may enjoy posting here even though they are gluten free but still having problems for which they seek support.

I rejoice at the hopeful thought that "most Celiacs in the world are doing fine"; but do not want to forget those that are not.

It can be how you look at yourself too.  I have 4 AI diseases, osteoporosis and right now, due to allergy season, am having a Sjogren's flare.  But if you ask me, I will truthfully tell you that I am fine....because I am.  It's going to take a lot more than this crap to pull me under......I just won't let these problems win.

I do feel extra pain for those who develop Celiac related cancers because they are rare and it just seems that is so unfair. Some have that dreadful experience due to doctor negligence about Celiac. I know 2 people who have Multiple Myeloma and you think their doctors even thought to test them for Celiac? With all the press about the numbers of undiagnosed out there, you would think that would change attitudes but it really has not.  Shameful.

[manasota]

I agree that we should never let any disease "win".  However, I welcome anyone who chooses to post here for support.

[kareng]

30 minutes ago, manasota said:

Let's not forget to hold good thoughts for those diagnosed late in life; and therefore, developed osteoporosis, lymphoma, or the dreaded assortment of autoimmune diseases as a direct result of having undiagnosed Celiac.  Also, we must remember those few unfortunate Celiacs who are refractory.  All of these people may enjoy posting here even though they are gluten free but still having problems for which they seek support.

I rejoice at the hopeful thought that "most Celiacs in the world are doing fine"; but do not want to forget those that are not.

I am not saying anything about "forgetting" people.  I think that if you just read here, you would think all Celiacs are a mess! lol That thought was what I was responding to.    Perhaps an example will explain what I mean - I worked in a hospital with a neonatal intensive care doctor.  She only saw the sickest babies.  And, frankly, most did not live.  And the ones that did live, often had horrible problems.  When she got pregnant, people asked her how she could have a baby seeing the babies she treated everyday.  She said she had to remind herself that she only saw an extremely small percentage of babies and that most babies are fine. That she never saw all the normal babies.  On this forum, we rarely see the Celiacs who are living life and doing well.  How many hundreds of thousands of Celiacs are there in the US?  Not even 1% are posting here.  Mostly because they are doing well and don't need help.

 

  I just think that is something we should all remember - most people live successfully with Celiac.  To me that is a positive and hopeful thought.  It doesn't negate those that are sick with other illnesses or those who need help getting started.  It just shows that we can heal and live a good life without Dunkin Donuts, Taco Bell,  and cheap delivery pizza. 

[manasota]

It is a small world!  I used to work in a large neonatal intensive care unit in a children's hospital. Most of our babies lived.  Still, I can identify with your example.  I agree with almost everything you posted.  However, I really do not know if "most people live successfully with Celiac".  That may actually be the case.  i just don't know it for a fact.  If that is the case, I think it should be posted in huge letters on every page of this website for us to continually read.  And memorize.  And re-read.  Respectfully, and only for the purpose of seeking information, how do you know it?  It seems to me that more and more researchers are recognizing higher numbers of us not doing well even though gluten free.  (I ask this only out of good intentions.)  I wish doctors would be required to survey Celiacs after 5 years gluten free to document their "success".  Again, I don't mean to criticize.  I'm simply seeking information.  (After all the help you've given on this website, a person would have to be crazy to criticize you!)  ;-)

[PamelaB]

What I try to remember is that celiac disease and my health issues do not define me. I define me. One day I realized all I had to talk about were my illnesses and how boring was that. So I stopped talking about it. There is so much more to me and I refuse to let any illness be my identity. Doesn't mean it's easy. Doesn't mean I often don't live with nausea 24/7 but it will pass and I will have good days. We all have actually been blessed in a back handed way because gluten is truly unhealthy for everyone. Eating healthy is a wonderful way to honor your body, mind, and spirit.

[kareng]

2 minutes ago, manasota said:

It is a small world!  I used to work in a large neonatal intensive care unit in a children's hospital. Most of our babies lived.  Still, I can identify with your example.  I agree with almost everything you posted.  However, I really do not know if "most people live successfully with Celiac".  That may actually be the case.  i just don't know it for a fact.  If that is the case, I think it should be posted in huge letters on every page of this website for us to continually read.  And memorize.  And re-read.  Respectfully, and only for the purpose of seeking information, how do you know it?  It seems to me that more and more researchers are recognizing higher numbers of us not doing well even though gluten free.  (I ask this only out of good intentions.)  I wish doctors would be required to survey Celiacs after 5 years gluten free to document their "success".  Again, I don't mean to criticize.  I'm simply seeking information.  (After all the help you've given on this website, a person would have to be crazy to criticize you!)  ;-)

I have no desire to argue with you. 

This from my personal experience.  I  work in a gluten free bakery.  I  see many people diagnosed with Celiac disease who are living life successfully.  I went to one of the International Celiac Disease Symposium few years back and met many people with Celiac  and who treat people with Celiac.  I will tell you that many have told me they used this forum when first diagnosed for info but, as they got the hang of it and healed, they didn't need it any longer.

I thought the OP has a legitimate rant and should be supported in her thoughts.  I agreed that sometimes I was frustrated to. 

 

[kareng]

1 minute ago, PamelaB said:

What I try to remember is that celiac disease and my health issues do not define me. I define me. One day I realized all I had to talk about were my illnesses and how boring was that. So I stopped talking about it. There is so much more to me and I refuse to let any illness be my identity. Doesn't mean it's easy. Doesn't mean I often don't live with nausea 24/7 but it will pass and I will have good days.

Yes! 

[kareng]

I want to add that last fall, I heard one of the doctors developing one of the drugs speak.  He said that it would first be used to help the small percentage of Celiacs (Refractory) that cannot heal with a regular diet.  I can't remember if it is 1%, 2% of diagnosed Celiacs?  That is a pretty small number. I am too busy living y life to go look that up!  lol

 

I will also, say that I have kept in touch with  10 - 15 people that were active here in the past.  They are living life and their whole life does not revolve around Celiac.

[manasota]

26 minutes ago, PamelaB said:

What I try to remember is that celiac disease and my health issues do not define me. I define me. One day I realized all I had to talk about were my illnesses and how boring was that. So I stopped talking about it. There is so much more to me and I refuse to let any illness be my identity. Doesn't mean it's easy. Doesn't mean I often don't live with nausea 24/7 but it will pass and I will have good days. We all have actually been blessed in a back handed way because gluten is truly unhealthy for everyone. Eating healthy is a wonderful way to honor your body, mind, and spirit.

Very, very well said!

[manasota]

27 minutes ago, kareng said:

I have no desire to argue with you. 

This from my personal experience.  I  work in a gluten free bakery.  I  see many people diagnosed with Celiac disease who are living life successfully.  I went to one of the International Celiac Disease Symposium few years back and met many people with Celiac  and who treat people with Celiac.  I will tell you that many have told me they used this forum when first diagnosed for info but, as they got the hang of it and healed, they didn't need it any longer.

I thought the OP has a legitimate rant and should be supported in her thoughts.  I agreed that sometimes I was frustrated to. 

 

I have no desire to argue with anyone.  I'm very sorry if you took it that way.  I'm simply seeking information. I have not had the benefit of the valuable experiences you describe.  I agree the OP had a legitimate rant.  I am frustrated  sometimes too.

I think my concern is that I don't want to forget those Celiacs who are gluten free and still have symptoms that were originally caused by Celiac--even if indirectly--by other issues (osteoporosis, other autoimmune diseases, etc).  Even though they are gluten free, eat whole foods they make from scratch, live as normally as they can, discuss many things other than their health concerns, they still find support here.  Not every Celiac who does everything they can to be well gets to the point where they find it useless to post here.  EVEN THOUGH THEY DO NOT HAVE REFRACTORY CELIAC.  Some of these people may still "need" to post here.  It is not their fault.  i don't want to lose patience with them.  That's all.  Actually, I really don't think we disagree.  I'm sorry if it appeared anything less than friendly.  I only wish you the best and am grateful for both your good health and your good guidance on this site.

[gilligan]

Karen is correct.  I am one of those people she speaks of who came here for advice for a couple years and seldom have a need to post once health was restored.  My sister is also doing fine, as are a friend and a friend's son-in-law.  Strange, but all four of us were diagnosed within a few weeks of each other.  How does that happen?

Also, gluten is not unhealthy for everyone!  It's getting a  bad rap right now in the media, but if you don't have celiac, an allergy to gluten, or NCGS, eat all the gluten you want.  Good grief!

[jonked]

8 hours ago, PamelaB said:

I realize this post will not make very popular with the group. But I get frustrated reading how miserable people feel and then read what they are eating. I want to pull my hair out when I read how staying away from gluten makes someone feel so much better and yet they are careless about it, get glutened and then opine about it. 

PEOPLE if you have been diagnosed with Celiac Disease or NCGS this is the new normal. You cannot and will never be able to eat or live like you did before. You will adapt. You will create a new lifestyle. Is going out to eat more important then feeling good? Is that piece of food worth your health? While you are laying in bed miserable because you were afraid to advocate for yourself to your family and friends, they are going about their lives. 

Well that's me told. I'm really pleased you've adjusted and are getting well Pamela, but I think perhaps you've forgotten the learning curve, the frustration, the mistakes. I came to this forum because I don't know anyone else in my situation in real life and I wanted a space to vent, without having to deal with friends who mostly think I'm crazy. This subsection is after all called 'COPING with Celiac disease', not 'Living happily with...'

I'm sure I will create a new lifestyle, and will adapt - I'm at least 90% there - but it's not easy. The change in lifestyle can put huge strain on relationships and be incredibly isolating. I think also it's particularly not easy if you don't have a formal diagnosis and therefore you tend to lack support from friends and family and sometimes even question your own sanity, which doesn't help you be 100% vigilant either. But surely this forum is a place where you should be able to whinge, even if you've been careless or downright stupid?

[MrsChoplin]

14 hours ago, jonked said:

Well that's me told. I'm really pleased you've adjusted and are getting well Pamela, but I think perhaps you've forgotten the learning curve, the frustration, the mistakes. I came to this forum because I don't know anyone else in my situation in real life and I wanted a space to vent, without having to deal with friends who mostly think I'm crazy. This subsection is after all called 'COPING with Celiac disease', not 'Living happily with...'

I'm sure I will create a new lifestyle, and will adapt - I'm at least 90% there - but it's not easy. The change in lifestyle can put huge strain on relationships and be incredibly isolating. I think also it's particularly not easy if you don't have a formal diagnosis and therefore you tend to lack support from friends and family and sometimes even question your own sanity, which doesn't help you be 100% vigilant either. But surely this forum is a place where you should be able to whinge, even if you've been careless or downright stupid?

I agree with you. 

[Newly Diagnosed]

Hi, I came to the forum for coping with this morning because I have been pretty down recently about the diagnosis.  I was diagnosed in December and for a while I was doing well by telling myself that I am eating lots of good foods and thinking positively.  But recently I have been invited to a whole host of birthday parties and it has hit me again how limiting the disease can be.  I eat before I go or I eat afterwards but I don't eat at the parties unless I take my own food.  My diagnosis took me by complete surprise.  I was diagnosed with Graves disease in 2012 and for years my thyroid hormones were either too high or too low and it seemed like I could never just hit the target and feel good.  When I went to my dr. in November 2015 I was feeling better than I had in a long time, like finally I was "back to normal."  Then with the blood test (and endoscopy following) discovered I really was sick even though I felt fine.  I gave up gluten, have been very careful, but I don't feel any different.  Yes, I know, I was feeling good and still am and I am very lucky in that respect because so many people on this forum are battling some debilitating symptoms.  At the same time, because I don't have any physical guide to when I consume gluten (at least as far as I can tell) I am very, very fearful of messing up.  I may not feel physically sick, but I do have extensive intestinal damage and am anxious to heal and to avoid any other celiac related illnesses.  It does surprise me when people who get very sick from eating gluten are not careful, but I understand how difficult it is to be surrounded by people who are eating and to abstain "just in case" when really a lot of the food is probably perfectly safe.  I have hesitated to whine here because so many people are dealing with much worse.  I come on here almost daily because I find it helpful and uplifting to hear stories from people who have adjusted.  I am sure once this has been my lifestyle for several years I will also have less trouble with things.  Right now whenever I hear of another party invitation I just cringe.  I am so glad that this site exists and that there is support for people with celiac or gluten sensitivity because it seems like I am very alone sometimes.   

[cyclinglady]

15 hours ago, jonked said:

Well that's me told. I'm really pleased you've adjusted and are getting well Pamela, but I think perhaps you've forgotten the learning curve, the frustration, the mistakes. I came to this forum because I don't know anyone else in my situation in real life and I wanted a space to vent, without having to deal with friends who mostly think I'm crazy. This subsection is after all called 'COPING with Celiac disease', not 'Living happily with...'

I'm sure I will create a new lifestyle, and will adapt - I'm at least 90% there - but it's not easy. The change in lifestyle can put huge strain on relationships and be incredibly isolating. I think also it's particularly not easy if you don't have a formal diagnosis and therefore you tend to lack support from friends and family and sometimes even question your own sanity, which doesn't help you be 100% vigilant either. But surely this forum is a place where you should be able to whinge, even if you've been careless or downright stupid?

Yes, this is the place where you can whine all you want even if you are careless or downright stupid!  (You might not get any sympathy if that is ALL that you do though.....)   I am here because I like the connection to others who are in the same boat.  It also keeps me up-to-date on celiac issues and helps me to adhere to the gluten-free diet!  

[cyclinglady]

I have been a member of celiac.com for three years and I have seen everything!  But Karen is right, as a newbie reading through old posts (and current) you might not think that you won't get well, but it is possible and many celiacs do just fine.  Older members pop in occasionally, but for the most part, they are busy with their lives.  

I am here because because I like helping people.  I too, need a place to vent.  This illness is hard.  Really hard and it's really isolating.  What other disease do you have where your doctor just tells you to manage your care? "Hey, you have to give up gluten, but Red Robin offers a gluten free menu!"  (That's my my GI said!)   For three years, I have contemplated attending my local celiac group, but it does not seem to be very active and the drive would be a hassle.  So, celiac.com has been a perfect fit for me.  

My hubby has been gluten-free for 15 years.  No formal diagnosis.  Went gluten-free per the poor advice from my allergist and his GP.  It was hard for him.  People did not always believe him, but he stuck to the diet.  It helped that I have all kinds of food allergies and was willing to give up gluten when he was around.  I took great care in keeping him safe, but in hindsight, it was not enough.   Since my diagnosis, he has said that he has never felt better.  As a team, it's easier to abstain and to avoid the risks.  

Am I 100%?  Like Manasota, I am older and have other AI issues.  This morning I seem to have "tennis" elbow probably from moving bins around (just had our house re-piped).  I tend to forget that I am no longer a spring chicken and should leave the heavy work to my kid!  So, there are many of us, who are not just dealing with celiac disease.  

I am thankful that I have "met" wonderful people on the forum!