7 Months in, still having "off" days :(

[Fbmb]

I'm frustrated. First of all, it's maddening to have Celiac, because I never know if a stomach ache or loose stools are because of gluten or because of anxiety, or something else entirely. That drives me nuts. 

I notice that sometimes in the mornings, especially when my anxiety is bad, I have these 50/50 stools. The first half or 3/4 is totally normal, the last part isn't. It's not "d" per say, but it's not formed either. I have gotten so obsessive over having the perfect bm that I wake up and immediately start to feel anxious and crampy, worrying that I won't have that perfect stool. And then worrying about why. Then if I go in the afternoon it's normal. Totally fine. But that isn't a daily occurance and I find that I'm not anxiously anticipating that. 

I wonder if this has anything to do with celiac and with my healing, or if when I wake up I start feeling anxious and my colon just goes wild - and stool that hasn't had a chance to fully digest gets pushed through too quickly. But that would be rather quick. Like within minutes of waking. First part is great, last part isn't. I don't get it. And it's not consistent. I seem to notice that more when my anxiety is bad. 

I had my numbers checked 2 months after diagnoses and they dropped significantly. Like, from >100 to 12. I'm so careful. I don't eat out. We basically have a gluten-free kitchen. So I don't think I'm contaminating myself. I just don't know why I can't achieve the perfect poop everyday. It's driving me insane. I know that sounds stupid and ridiculous but I assumed that being gluten free would solve all of my GI issues and that I would be 100% all the time after being gluten free. I say "perfect poop" humorously, but if I am anything aside from "regular" I panic over it.

and also, because I have never asked, is that even a realistic expectation? Maybe I'm hoping for something that'll never even happen because nobody experiences the perfect bm everyday.

sorry for all the TMI. I just know that many of you are experts on all things gut related, and I'm still new. 

 

[cyclinglady]

I think you are doing fine.  Your antibodies are down.  Congratulations!  But I think your expectations for recovery are too high.  Let's face it.  You have an autoimmune disease that will never go a way.  You are going to have ups and downs.  Celiac damage goes beyond the gut.  Systemic damage can take a long time to heal.  

Even though I just had anemia when I was diagnosed, I finally realized that I had a bunch of other little issues that I attributed to aging.  Looking back, I can probably blame celiac disease.  My teeth and bones will never recover because of celiac disease and the fact that I am menopausal.  Sad, but that is life.  Things could be worse.  I have food intolerances that have not resolved and those affect my GI tract.   I am also dealing with Hashimoto's which may or may  not be the cause of my five month bout of chronic hives.  I am an allergic mess.  

There has been some steady research on the subject of celiac disease,  but there is still so much that is unknown.  We can be thankful that we know the trigger for flare-ups (unlike lupus, RA or MS).  You know that things can be much worse. 

So, what do I do to cope?  I move forward.  I try to simplify my life and enjoy doing the things I can do.  I do not dwell on things that I can't do or that are beyond my control.  I focus on helping others.  It is one reason why I am still active on this forum.  KarenG reminds us that members who were once active are gone because they get well and move on.  Think about it.  

Hugs!  

 

[Fbmb]

1 minute ago, cyclinglady said:

I think you are doing fine.  Your antibodies are down.  Congratulations!  But I think your expectations for recovery are too high.  Let's face it.  You have an autoimmune disease that will never go a way.  You are going to have ups and downs.  Celiac damage goes beyond the gut.  Systemic damage can take a long time to heal.  

Even though I just had anemia when I was diagnosed, I finally realized that I had a bunch of other little issues that I attributed to aging.  Looking back, I can probably blame celiac disease.  My teeth and bones will never recover because of celiac disease and the fact that I am menopausal.  Sad, but that is life.  Things could be worse.  I have food intolerances that have not resolved and those affect my GI tract.   I am also dealing with Hashimoto's which may or may  not be the cause of my five month bout of chronic hives.  I am an allergic mess.  

There has been some steady research on the subject of celiac disease,  but there is still so much that is unknown.  We can be thankful that we know the trigger for flare-ups (unlike lupus, RA or MS).  You know that things can be much worse. 

So, what do I do to cope?  I move forward.  I try to simplify my life and enjoy doing the things I can do.  I do not dwell on things that I can't do or that are beyond my control.  I focus on helping others.  It is one reason why I am still active on this forum.  KarenG reminds us that members who were once active are gone because they get well and move on.  Think about it.  

Hugs!  

 

Thank you for responding to me. You're the best. I think my expectations are high. And I think that you were like me, and had pretty significant damage. I think we were both stage 3b, right? Maybe I'm still healing. And maybe my anxiety disorder is causing this and it's not even related to celiac. I don't know. It's frustrating  I know you get it. I'm sorry that you do, but I'm glad to know that people understand. 

[Ennis-TX]

I get the off days,,,sometimes it is due to eating to much of something else I have a bit of intolerance to >.< I know I should not but sometime I do. Other times it is due to me not eating the right amount of a certain nutrient which I can easily fix. I find working out first thing in the morning and decent amounts for b-vitamin and magnesium supplements work the best. Sometimes it need a bit of extra and use a CBD Vape pen to ease nerves, anxiety, depression. As of late just been stressed with money, my business, and a infection I can not see a doctor for.

My issues with bowls is retarded, it can be constipated one day and 4 HUGE BM in a few hours the next day. And after the dumping process I feel bad the rest of the day. Other times it is regular once or twice a day and I feel great....wish it was consistent, sometimes it seems to have little to do with my diet and more with stress.

[cyclinglady]

This is why Celiac.com is here!  The founding member, after all these years, still has a strong  desire to help celiacs and anyone with a gluten issue (because science does not know how gluten can affect some people negatively without GI damage).  

Our doctors don't have time and honestly, our family and friends don't get it either.  We are lucky to have the internet and this forum.  Can you imagine how isolating it must have been years ago?  

 

[Ennis-TX]

4 minutes ago, cyclinglady said:

This is why Celiac.com is here!  The founding member, after all these years, still has a strong  desire to help celiacs and anyone with a gluten issue (because science does not know how gluten can affect some people negatively without GI damage).  

Our doctors don't have time and honestly, our family and friends don't get it either.  We are lucky to have the internet and this forum.  Can you imagine how isolating it must have been years ago?  

 

Going to be bluntly honest, I consider many on this forum to be more like family then my actual family. I lost most my friends and was outcast by my family due to my health issues. I have found acceptance here, understanding, people I can relate to, and a place I feel I belong and can be useful. >.> we should do a secret santa, meet ups, and events for the oldies and regulars lol. Anyway this forum is a wonderful place, without it.....I dread to think how much more broken, cornered, and lost I would be....or what I might have done.

[Fbmb]

8 minutes ago, cyclinglady said:

This is why Celiac.com is here!  The founding member, after all these years, still has a strong  desire to help celiacs and anyone with a gluten issue (because science does not know how gluten can affect some people negatively without GI damage).  

Our doctors don't have time and honestly, our family and friends don't get it either.  We are lucky to have the internet and this forum.  Can you imagine how isolating it must have been years ago?  

 

I can't imagine. My aunt was diagnosed in the 90s and she said she would cry every time she went to the store. She was so sad and didn't know what she could eat. I can't imagine. I'm grateful for the awareness and the support I have found. 

Looking back, last night I had a milkshake. I promised my little guy that we could have one, so I made one. I used Breyers ice cream, which is gluten free. But there's a ton of ice cream in even a little shake. I used almost half of a container of ice cream to make 3 little shakes (maybe 4 oz for my babe and 6 oz for my husband and me). Maybe that was too much for me. I don't think I dealt with lactose intolerance before I was diagnosed but my GI didn't check my enzymes either. And I know that reactions to yogurt and cheese vs ice cream can vary. The other night I made Alfredo and was fine. But maybe I overdid it with ice cream last night. I also had sour cream and cheese on my dinner before that. Oh, and then string cheese for a snack after the milkshake. Haha. 

[Ennis-TX]

8 minutes ago, Fbmb said:

I can't imagine. My aunt was diagnosed in the 90s and she said she would cry every time she went to the store. She was so sad and didn't know what she could eat. I can't imagine. I'm grateful for the awareness and the support I have found. 

Looking back, last night I had a milkshake. I promised my little guy that we could have one, so I made one. I used Breyers ice cream, which is gluten free. But there's a ton of ice cream in even a little shake. I used almost half of a container of ice cream to make 3 little shakes (maybe 4 oz for my babe and 6 oz for my husband and me). Maybe that was too much for me. I don't think I dealt with lactose intolerance before I was diagnosed but my GI didn't check my enzymes either. And I know that reactions to yogurt and cheese vs ice cream can vary. The other night I made Alfredo and was fine. But maybe I overdid it with ice cream last night. I also had sour cream and cheese on my dinner before that. Oh, and then string cheese for a snack after the milkshake. Haha. 

....NOTE next time use dairy free options lol, yeah I can say that would mess with NORMAL people with that amount of dairy.......I would be death bed sick after that much. I eat icecream dairy free/sugar free EVERY DAY, mixed with protein powder, almond butter, coconut yogurt and extracts....actually trying to make a business out of it selling it next to my baked goods at a market.  >.< I love the cheese stuff myself I even have dairy free cheese extracts that I mix in soups, and egg dishes....love the cheddar, brie, and blue cheese extracts I found lol. Heck this morning was a brie and spinach omelette using that extract.

I can make a damn good Alfredo out of cauliflower or avocado you need the recipes?

 

[cyclinglady]

I love Breyers.  I buy it for my family.  But I found that I do best with just plain vanilla.  The other flavors have some added junk that does not agree with me.  I can only have a few bites because it impacts my blood sugar!  ?

 

[Fbmb]

2 minutes ago, Ennis_TX said:

....NOTE next time use dairy free options lol, yeah I can say that would mess with NORMAL people with that amount of dairy.......I would be death bed sick after that much. I eat icecream dairy free/sugar free EVERY DAY, mixed with protein powder, almond butter, coconut yogurt and extracts....actually trying to make a business out of it selling it next to my baked goods at a market.  >.< I love the cheese stuff myself I even have dairy free cheese extracts that I mix in soups, and egg dishes....love the cheddar, brie, and blue cheese extracts I found lol. Heck this morning was a brie and spinach omelette using that extract.

I can make a damn good Alfredo out of cauliflower or avocado you need the recipes?

 

Well I seem fine with dairy, but my doctor said that a lot of people have issues if they eat it in large quantities. I eat yogurt daily. I also eat cheese everyday. But I space them out most of the time. And I eat Halo Top ice cream a few times a week, but again, not a huge amount. And it's not consistent. Sometimes I'm fine with dairy. Most of the time I am. Like last weekend we had a little shake and I was ok but I hadn't eaten any other dairy for that meal.

[Ennis-TX]

4 minutes ago, cyclinglady said:

I love Breyers.  I buy it for my family.  But I found that I do best with just plain vanilla.  The other flavors have some added junk that does not agree with me.  I can only have a few bites because it impacts my blood sugar!  ?

 

Open Original Shared Link

Sugar, Diary, gluten free, soy free, and a bonus for you they do not use xantham gum but instead use locust bean or guar gum ....I have a slight issue myself with xantham

[cyclinglady]

29 minutes ago, Ennis_TX said:

Open Original Shared Link

Sugar, Diary, gluten free, soy free, and a bonus for you they do not use xantham gum but instead use locust bean or guar gum ....I have a slight issue myself with xantham

Thanks, Ennis!  

[Victoria1234]

1 hour ago, Fbmb said:

I'm frustrated. First of all, it's maddening to have Celiac, because I never know if a stomach ache or loose stools are because of gluten or because of anxiety, or something else entirely. That drives me nuts. 

I notice that sometimes in the mornings, especially when my anxiety is bad, I have these 50/50 stools. The first half or 3/4 is totally normal, the last part isn't. It's not "d" per say, but it's not formed either. I have gotten so obsessive over having the perfect bm that I wake up and immediately start to feel anxious and crampy, worrying that I won't have that perfect stool. And then worrying about why. Then if I go in the afternoon it's normal. Totally fine. But that isn't a daily occurance and I find that I'm not anxiously anticipating that. 

I wonder if this has anything to do with celiac and with my healing, or if when I wake up I start feeling anxious and my colon just goes wild - and stool that hasn't had a chance to fully digest gets pushed through too quickly. But that would be rather quick. Like within minutes of waking. First part is great, last part isn't. I don't get it. And it's not consistent. I seem to notice that more when my anxiety is bad. 

I had my numbers checked 2 months after diagnoses and they dropped significantly. Like, from >100 to 12. I'm so careful. I don't eat out. We basically have a gluten-free kitchen. So I don't think I'm contaminating myself. I just don't know why I can't achieve the perfect poop everyday. It's driving me insane. I know that sounds stupid and ridiculous but I assumed that being gluten free would solve all of my GI issues and that I would be 100% all the time after being gluten free. I say "perfect poop" humorously, but if I am anything aside from "regular" I panic over it.

and also, because I have never asked, is that even a realistic expectation? Maybe I'm hoping for something that'll never even happen because nobody experiences the perfect bm everyday.

sorry for all the TMI. I just know that many of you are experts on all things gut related, and I'm still new. 

 

I've been gluten-free since 2008 and still have issues with a day or two of not going. No idea why either. Not exactly your issue, but a bathroom issue that's kind of related I have gobs of stress right now, and the not going makes it worse. I do so hope that you can enjoy the days you are regular, and not beat yourself up when it's not. That's what I try to do. But I totally understand the obsession about it! 

[icelandgirl]

Hi Fbmb and (((hugs)))!

I get it...totally.  I remember doing that every day, looking at the poop to see if it was perfect!

You are definitely still healing.  It takes much longer for some of us than Drs lead us to believe.  I still have off days after 3+ years.  I'm having one today and have no idea why.

I don't have perfect poops daily and don't know that it's reasonable to expect to.  

I do eat Breyers, but just the Natural Vanilla.  The simpler the better for my body, I've found.

I think you're doing great.  It takes a lot of patience to get through this!

[ysali]

I've been gluten free for a little over three months and I think a part of me was hoping to get better right away but it's been a roller coaster. Never in my life did I think I would get excited over fully formed stool (nor that I would be obsessively inspecting what was in the toilet) but here I am. For the most part, I relate very much to what you described. I get so anxious about whether or not it's going to be 'perfect' that I end up making it worse for myself - I've definitely noticed that my anxiety has a huge impact on what comes out. Most days it's a combination of 'solid' and not fully formed which is incredibly frustrating. My family, mainly my dad, cannot seem to stay away from gluten products so I have unfortunately been subjected to cross contamination more than once which is not helping my situation at all. 

[BarryC]

I certainly feel your pain. It is so meddening to figure out what the hell is going on, but gluten can effect everything!  Took me about five years,  but a gluten/casein free diet works for me and it is fairly easy to follow. Take care.

 

[Fbmb]

On 6/6/2017 at 4:37 PM, ysali said:

I've been gluten free for a little over three months and I think a part of me was hoping to get better right away but it's been a roller coaster. Never in my life did I think I would get excited over fully formed stool (nor that I would be obsessively inspecting what was in the toilet) but here I am. For the most part, I relate very much to what you described. I get so anxious about whether or not it's going to be 'perfect' that I end up making it worse for myself - I've definitely noticed that my anxiety has a huge impact on what comes out. Most days it's a combination of 'solid' and not fully formed which is incredibly frustrating. My family, mainly my dad, cannot seem to stay away from gluten products so I have unfortunately been subjected to cross contamination more than once which is not helping my situation at all. 

Do you feel like the anxiety over going and having a fully formed stool are causing loose stools? I just can't help but think it's a factor for me. Because I know for a fact I'm not eating gluten. We basically have a gluten free kitchen, and what's not gluten free stays far away from me and from my products. I'm compulsive. I don't eat out. I don't eat much processed food. But I'm a nervous wreck. 

[cyclinglady]

4 hours ago, Fbmb said:

Do you feel like the anxiety over going and having a fully formed stool are causing loose stools? I just can't help but think it's a factor for me. Because I know for a fact I'm not eating gluten. We basically have a gluten free kitchen, and what's not gluten free stays far away from me and from my products. I'm compulsive. I don't eat out. I don't eat much processed food. But I'm a nervous wreck. 

Stop looking into the toilet unless you are cleaning it!  Take a week off from googling health issues. And the next time you post, I would love to see it in the "Anything but Celiac Disease" section talking about what fun you had with your family this weekend.  

We are savoring a sleeping-in Saturday.  Teen is still sleeping.  I am online and drinking coffee after some gardening.  Hubby is off to SIL's to replace a kitchen facet (he's the last of the male line and has to take care of us all!).  Yesterday, was a day trip to a theme park and way more uplifting than our excursion last week  to The Museum of Tolerance.  

Last summer, I was standing in Auschwitz contemplating the horrors of what people experienced.  Not to be crass, but a formed stool was the least of their worries.  

Live.  

[BarryC]

Great advice cyclinglady!

 

[Fbmb]

4 hours ago, cyclinglady said:

Stop looking into the toilet unless you are cleaning it!  Take a week off from googling health issues. And the next time you post, I would love to see it in the "Anything but Celiac Disease" section talking about what fun you had with your family this weekend.  

We are savoring a sleeping-in Saturday.  Teen is still sleeping.  I am online and drinking coffee after some gardening.  Hubby is off to SIL's to replace a kitchen facet (he's the last of the male line and has to take care of us all!).  Yesterday, was a day trip to a theme park and way more uplifting than our excursion last week  to The Museum of Tolerance.  

Last summer, I was standing in Auschwitz contemplating the horrors of what people experienced.  Not to be crass, but a formed stool was the least of their worries.  

Live.  

I apologize but thought that I could come here to ask for advice and input. I don't have anyone else to ask sometimes. I guess I expect people to be sort of empathetic since I'm new at this, and hope they remember how they felt at 7 months into this. I'll just call my doctor. 

[BarryC]

This disease brings out the best and the worst in people.  There are still a lot of people that don't even believe gluten sensitivity exists.  I look at my poop too, but colo-rectal cancer runs in my family and got my Dad and uncle, so I am obsessed about digestion.  This is a great place though, I first came here in 2012, bounced in and out, trying to figure out what was wrong with me.  So glad I finally put the puzzle together, but much frustration along the way. Lately, with friends passing, and the state of the world, I feel lucky to be alive and fairly healthy living where I do.  Summer is here, the birds are singing, its great to be alive.  

[icelandgirl]

4 hours ago, Fbmb said:

I apologize but thought that I could come here to ask for advice and input. I don't have anyone else to ask sometimes. I guess I expect people to be sort of empathetic since I'm new at this, and hope they remember how they felt at 7 months into this. I'll just call my doctor. 

Hi again and more ((((hugs))))!

Do keep asking!  I get it.  The first 3-4 months I saw significant improvement and then things went a little downhill for me.  I'm not completely sure why.  I had a lot of anxiety as well.  At one point I was only eating 6 foods just to try to figure out what might be bothering me.  The good news is that 3 years later I feel a lot better.

As far as anxiety goes, have you had a complete thyroid panel?  Not just TSH.  I ask because nothing has raised my anxiety more than having my thyroid be off.  Just something to think about.

I hope you are feeling better. ?

[cyclinglady]

@Fbmb

It was not my intent to hurt you.  I am sorry.  I was trying to cheer you up.    Dealing with a life-long illness, like celiac disease is hard, but it can get better.  I am not a psychologist or a doctor.  I can only speak from my own personal experience and as a friend.  Perhaps, my strategy of thinking of positive things to get me through rough patches is not appropriate.  

This is a place where we can vent, ask questions, get advice and to feel like we are with "like people".  People who have walked in the same shoes in dealing with celiac disease or NCGI.  Because no matter how much our family and friends live us, they just don't get it.  No matter the diagnosis, we are dealing with huge change of lifestyle.  Being gluten-free is not easy.  We can not let our guard down and it is exhausting.  

Things could be worse.  But they can get better too.  

Talking to your doctor is a good idea and it can only help! 

Hugs!  (I mean that sincerely....)

 

[Fbmb]

9 hours ago, icelandgirl said:

Hi again and more ((((hugs))))!

Do keep asking!  I get it.  The first 3-4 months I saw significant improvement and then things went a little downhill for me.  I'm not completely sure why.  I had a lot of anxiety as well.  At one point I was only eating 6 foods just to try to figure out what might be bothering me.  The good news is that 3 years later I feel a lot better.

As far as anxiety goes, have you had a complete thyroid panel?  Not just TSH.  I ask because nothing has raised my anxiety more than having my thyroid be off.  Just something to think about.

I hope you are feeling better. ?

You sound like me. I've been going over and over in my head what could be going on and I can't figure it out. If it's dairy, it's only sometimes. If it's corn, it's only sometimes. Basically, the bottom line is, regardless of what I eat for dinner my dinner is passing through me too quickly or isn't forming a solid stool like every other meal. It's just dinner. Every other meal, every other time I go, I'm fine. It's just dinner. I eat dinner, feel ok, and the next morning I have this issue. I won't get into how I know it's dinner. But I do. I'm positive. So what the heck is going on? Does that sound like IBS? I would think if it were IBD or anything "wrong" with my colon I would be having this issue every time I went to the bathroom, and not just at 5:45 am. I'm getting so frustrated. I was like you. By like 4-5 months things were pretty good most days. I was so relieved. And now this. I don't get it. I could go crazy and eliminate all kinds of things from my diet but I don't see how that could help when it's never consistent. It's not like if I don't eat cheese this doesn't happen, or if I stay away from corn it doesn't happen. It doesn't matter what I eat. Dinner is not formed, period. I'm so discouraged.

What did you ever figure out? Did it just subside? 

[Ennis-TX]

7 minutes ago, Fbmb said:

You sound like me. I've been going over and over in my head what could be going on and I can't figure it out. If it's dairy, it's only sometimes. If it's corn, it's only sometimes. Basically, the bottom line is, regardless of what I eat for dinner my dinner is passing through me too quickly or isn't forming a solid stool like every other meal. It's just dinner. Every other meal, every other time I go, I'm fine. It's just dinner. I eat dinner, feel ok, and the next morning I have this issue. I won't get into how I know it's dinner. But I do. I'm positive. So what the heck is going on? Does that sound like IBS? I would think if it were IBD or anything "wrong" with my colon I would be having this issue every time I went to the bathroom, and not just at 5:45 am. I'm getting so frustrated. I was like you. By like 4-5 months things were pretty good most days. I was so relieved. And now this. I don't get it. I could go crazy and eliminate all kinds of things from my diet but I don't see how that could help when it's never consistent. It's not like if I don't eat cheese this doesn't happen, or if I stay away from corn it doesn't happen. It doesn't matter what I eat. Dinner is not formed, period. I'm so discouraged.

What did you ever figure out? Did it just subside? 

Part of this is sorta relateable, For the past year I have been eating smoothies, shakes, or homemade protein icecream for dinner and soft microwaved eggs, avacado, and nut/seed butters. Reason being if I eat ANYTHING not blended, hard, or not  cooked to mush for dinner, I throw it up 2-4 hours later. No clue why but I can eat ANYTHING for breakfast, snack, lunch, while afternoon snacks, and dinner have to be soft or liquid.  Funny how it does this.

On a side note on anxiety I had a bit of a panic attack yesterday for the first time in a long time. Sales at the market were atrocious for some reason, great weather but hardly anyone out there. After making Vegan Cheesy garlic bread, Butter rum Cookies, Chocolate Brownies, Paleo Banana Muffins, and Paleo Cinnamon cake along with over 3lbs of 4oz tubs of artisan almond butters, only making $12 in sales for a entire market.......I snapped. Does not help I inhaled flour walking into a doughnut shop to use the restroom and got the mental gluten fog.  I literally started randomly yelling about I should say F**k it all get a nice life insurance program, and just end it all. Then went into a whole random rant while packing up about hating myself for being a useless leech yada yada yada, complaining about recent events, and health expenses, then a whole new rant our complaining about not having enough money to further my business, then another one about my recent medical cost and lack of ability to pay for them........yeah it got some odd looks...........I HAVE NEVER broken down into a suicidal rant publicly EVER before. So this in hindsight surprises me and scared the crud out of the guy next to me at the market. I later went back out there and apologized after taking some anti stress supplements and sleeping a few hours. PS NO worries about actual suicide pretty sure it was the fog talking, I really have too much to live for. I need stick around and provide food, moral support, and recipe idea for others with this disease (My found purpose in life).  I have dreams of opening a food truck for this purpose, and right now will keep running the bakery.