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Days Like This I Feel Like Giving Up


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#1 rgarton

 
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Posted 13 September 2011 - 12:02 AM

Hey, i am also a super sensi celiac. Over the last month or so i have been feeling better since my diagnosis in january, i know it will take a while, and not realsising i was reacing to soya or tomatoes for a long time didn't help.

Thanks to celiacness i have a crippling anxiety to go anywhere, i am trying to get help without medication, like therapy and homeopathy etc. But last night i freaked out, i always go to the bathroom (yes in tht way) in the morning, and suddenly last night i needed to go, the bm itself was fine, but the thought of my BM habits changing again just tipped me over the edge. I started crying and couldn't stop thinking about how reclusive I have become, how i hardly leave the house in fear of getting ill. I hate it. And this morning, i thought to myself, today will be better and fine. Then voila a mucus passing of gas appeared, sorry its gross and tmi but your the only guys i know to turn too. I'm so sick and tired of this, im not suicidal or anything, i just dont want this anymore! I don't know how to respond to my body when this happens, I'm dairy, soya and tomatoe free too. I'm a vegetarian and eat mainly organic and fresh things. The only dairy i do have is my daily pro-biotic, which if i dont have my belly punishes me the next day.

Does anyone have any anxiety coping methods? Any anwsers to my inconsistant healing process? ANy reassurance one day it'll feel like i dont even have a stupid disease!?

Thanks, and sorry for the ranting.
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#2 Stormy

 
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Posted 13 September 2011 - 02:11 AM

I wish I had a really good answer for you, I've just learned how to deal, and I eat at home before I go anywhere.. the person that tries to get me to eat something I don't want to, tends to get either an in-depth lesson on Celiac Disease, or a graphic description of what happens when I eat something I shouldn't. Usually gets the pressure off quickly. As for your probiotic.. it may be helping one way but hurting another, if it's got dairy and your body can't tolerate any dairy. At least thats my GUESS, anyway. At this point, I'd call your doctor and discuss it with them, too. Just be clear you don't want any drugs for anxiety, but are looking for maybe a dairy free probiotic, assuming they exist, or an alternative to a probiotic. One thing I did discover when I get really bad anxiety is that exercise tends to help. Anything from a walk around the block at home to a yoga class at the gym or a workout video in your own living room... something to move and give the anxiety a way to be released. Anyway, I hope this helps!! Good luck, this disease is NOT a pleasant thing to be stuck with, but it is something we can live with, it just takes time.
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#3 dilettantesteph

 
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Posted 13 September 2011 - 03:52 AM

Are you eating any grains, spices, have you checked toiletries dish soap etc. carefully? Do you live in a shared household? Do you eat out of your house?

I would recommend skipping all processed foods until you heal. Keep a food/health diary so that you can track where symptoms are coming from. It can take a week or longer to notice a reaction, depending on the level of cc. After you heal, only add one new thing a week.

When I get glutened, especially when I can't figure out why, I feel like giving up too. It is such a struggle. It just isn't fair for simple eating to be so difficult.
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#4 T.H.

 
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Posted 13 September 2011 - 09:18 PM

So sorry! *virtual hug*

We've all been there - well, not exactly there, but our version of it. That point where all the hard work on the diet seems like it's blowing up on you and everything is going back to 'awful' and you just wanna give up and have a good, gut wrenching cry.

Or at least I can speak for myself and say that I've been there. So sorry - it's a terrible feeling, I know.

Okay, let's see what we can do, eh?

First, if have the energy and time, a list of brand names that you eat - for vitamins, probiotics, oil, rice, whatever - might be helpful. Some people here may have information about certain products that could be of use. What you do at home to avoid gluten cc, what products you use that touch your hands or your face and might get in your mouth, what foods you usually eat - we can see what we can come up with to help!

Second, for any products you buy and consume. Here are some questions you may want to call them and ask:
Is their product gluten free? (sometimes the info. changes before the web info. has been changed)
Is it made in a gluten-free facility or on a gluten-free line?
Is it tested for gluten? If so, how frequently?

If you are super-sensitive, I would drop any product that does not test for gluten, or any one that only tests periodically if it's not on a gluten-free line, at least until you are feeling better. That includes beans, grains...anything that is processed.

Third, I would check all your organic produce for waxes. Some waxes contain dairy and/or soy, so that could be part of the issue for you, personally. And organic produce can be waxed. Stores are supposed to have a label somewhere in the produce department that's easy to see, but they often don't.

Fourth, I'd start making your own probiotics. You can do it from your own foods, nothing else added, just natural fermentation if you have a sweet enough food plus some time. I did this with apples and made apple cider vinegar that I didn't pasteurize so it would retain the live bacteria. I've noticed a difference if I take it when I'm eating certain foods, vs. not taking it.

Anxiety coping methods - my daughter has much more trouble with this. For the most part, finding things she can focus on helps, something small, unstressful, but that takes a lot of focus at the same time. She keeps at it until the anxiety attack passes. Tangrams, crosswords, puzzles, that sort of thing. I picked a foreign language to learn that I can focus on when things get bad. I try to make some dishes ahead of time and freeze them, so I have something I can make and eat when I'm freaking out and feeling awful and don't want to cook.

Inconsistent healing for me, at least, involved foods I totally missed that were getting me with gluten cc. My salt (2 different ones), my oils, my ground meat (shared grinders with wheat containing sausage), the wax on some veggies, that sort of thing. My sensitivity is on the extreme end, but I'd still hazard a guess that if your recovery is going up and down, you may be picking up some gluten cc somewhere.

On feeling like you don't have the disease. If you mean feeling good again? I definitely got that. It happens, even if it takes a while, and it does feel so, so much better. But...I still very much 'feel' like I have this in terms of how I have to approach eating and food. I don't think I'll ever be able to stop that.

I just try not to let it overshadow all the parts of life I enjoy. I've found new things to do where I used to do food-centered activities. And I honestly feel better than I have in years, so even with all this work, SO much better than feeling how I used to feel!
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#5 joshuasmom2323

 
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Posted 15 September 2011 - 07:31 AM

Hi,

This is my first post. I wanted to say that I feel what you are going through. Anxiety is a huge part of my everyday nightmare. I also wanted to comment on the mucas gas thing, I just got that last evening and it has really freaked me out. I thought I needed to do a bowel movement and then bam, just this liquid gassy mucus. It has me so stressed. I went to the Doctor last week, and she did some blood test to test for celiac disease, but I am concerned it will come out negative because I started eating Gluten Free about a month ago. Also not to be gross, but sometimes my poop is kind of grainy if that makes sense. Any help would be greatly apprciated. Because of my extreme health anxiety nothing scary please. Just wondering if others have this as well.

Thanks so much
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#6 rgarton

 
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Posted 17 September 2011 - 03:31 AM

Hi,

This is my first post. I wanted to say that I feel what you are going through. Anxiety is a huge part of my everyday nightmare. I also wanted to comment on the mucas gas thing, I just got that last evening and it has really freaked me out. I thought I needed to do a bowel movement and then bam, just this liquid gassy mucus. It has me so stressed. I went to the Doctor last week, and she did some blood test to test for celiac disease, but I am concerned it will come out negative because I started eating Gluten Free about a month ago. Also not to be gross, but sometimes my poop is kind of grainy if that makes sense. Any help would be greatly apprciated. Because of my extreme health anxiety nothing scary please. Just wondering if others have this as well.

Thanks so much


Hi, don't freak out, i have grainy bm's as well as the mucus thing, had the mucus thing many times, it is gross, but part of being celiac i guess! The graininess was weird for me and i freaked out big time, but apparantly it's a part of the giving up gluten, like a detox i guess. Some people have horrendous gluten withdrawal, i didn't i just had grainy bm's, almost like I'd consumed sand or something! It goes after a while, don't worry. I even had a stool sample to check. Nothing to worry about. Stress doesn't help the stomach, so like previous ppl have said before, try and relax, accept and do yoga or something :)

Hope your okay.
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#7 rgarton

 
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Posted 17 September 2011 - 03:37 AM

I must say you guys have been the most supportive people, and i appreciate it so much. I've started hula-hooping as excercise so i get some fun out of it too and i can do it at home, its brilliant fun, and also means i leave the houe at least once a week and mingle with other people. I found the breathing excercises in yoga and pilates too difficult and they brought onanxiety attacks oddly enough. I had an unusual heart pattern last year they never knew what it was but whilst doing yoga and pilates breathing patterns its started again, so i'm doing hula hooping instead.

I agree i'm probably getting cc'd somewhere, i live with my mum and brother, mum is a celiac but not too sensitive and my brother is a wheatmonster. He's not careful either and never will be, just the way it is, so i've started washing anything before i use it. I realised whilst eating my gluten free cereal a dried coco pop on the side of the bowl i was using from where he'd half assed the washing up. Never again.

The dairy thing, i will see about making my own pro-biotics, it sounds fun and i will se how it goes, or try and find some dairy free ones. I can tolerate lacto-free milk just fine so maybe a mix of both. I should probably cut out chocolate completely then, sigh! No worries though, i found some amazing lemony biscuits wheat free of course to satisfy those cravings.

Never knew about wax on veggies! Will now check! Feels like my life will be checklists from now on, but i don't mind to be honest, better safe than sorry.

Man, you guys have cheered me up, and feel more normal. Thank you so much. *virtual hugs to all*
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#8 dilettantesteph

 
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Posted 17 September 2011 - 04:48 AM

Never knew about wax on veggies! Will now check!

Back when I was able to tolerate "gluten free" cereals, I didn't have any problem with wax on veggies. You probably don't need to worry about it.

There is a variety of sensitivities among super sensitives too.
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#9 desert rose

 
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Posted 17 September 2011 - 08:01 AM

Dont give up. My heart goes out to you. Im a super sensitive gluten intolerant. It is a whole lifestyle change but it is certainly worth it.
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#10 T.H.

 
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Posted 17 September 2011 - 10:57 AM

Back when I was able to tolerate "gluten free" cereals, I didn't have any problem with wax on veggies. You probably don't need to worry about it.


Oh, I don't think I explained that one well. Thanks for mentioning it! I was more bringing it up because of the dairy and soy issues, since those are problems for rgarton. Not sure of the soy/dairy sensitivity level, so I figured I'd mention.

It is a very small amount, though, so if you're not hugely sensitive, rgarton, they may not bother you much at all.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#11 joshuasmom2323

 
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Posted 18 September 2011 - 08:47 AM

Hi, don't freak out, i have grainy bm's as well as the mucus thing, had the mucus thing many times, it is gross, but part of being celiac i guess! The graininess was weird for me and i freaked out big time, but apparantly it's a part of the giving up gluten, like a detox i guess. Some people have horrendous gluten withdrawal, i didn't i just had grainy bm's, almost like I'd consumed sand or something! It goes after a while, don't worry. I even had a stool sample to check. Nothing to worry about. Stress doesn't help the stomach, so like previous ppl have said before, try and relax, accept and do yoga or something :)

Hope your okay.


Hi,

Thank you sooooo much. You really helped me calm down. I really wish I could just go to the bathroom, and not even pay attention to what my stool looks like, oh to be "normal" again. I often think stress and anxiety play a big part of my digestion issues. I hope you are feeling better.

Thanks again,
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#12 maelenebaby

 
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Posted 02 November 2011 - 05:15 AM

hi i hope everyone reads this there is hope if you have symptoms of anxiety, diarrhea, and other stomach pains. i felt just like u extreme anxiety but i also got pain and nothing worked. i went to an herbalist and she gave me intestinal soothe and builde it has all natural herbal supplements in it where it soothes the intestines and your stomach. it has helped me out so much i feel normal again. no diarrhea, anxiety, or stomach pains. please try it and i also find it helpful if i accidently eat gluten too.
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#13 T.H.

 
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Posted 02 November 2011 - 08:48 PM

i went to an herbalist and she gave me intestinal soothe and builde it has all natural herbal supplements in it where it soothes the intestines and your stomach. it has helped me out so much i feel normal again.


Unfortunately, things like supplements, enzymes, and the sort of thing you mentioned tend to be problematic for many super-sensitive celiacs due to gluten cc. They are rarely gluten free enough for us to use safely, even if they might have been useful if we could find a clean source.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#14 dilettantesteph

 
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Posted 03 November 2011 - 03:36 AM

Unfortunately, things like supplements, enzymes, and the sort of thing you mentioned tend to be problematic for many super-sensitive celiacs due to gluten cc. They are rarely gluten free enough for us to use safely, even if they might have been useful if we could find a clean source.

So true. If it's possible to grow yourself, that would be a good possibility. Can you give names of plants that have helped you?
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#15 Di2011

 
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Posted 03 November 2011 - 03:43 AM

I must say you guys have been the most supportive people, and i appreciate it so much. I've started hula-hooping as excercise so i get some fun out of it too and i can do it at home, its brilliant fun, and also means i leave the houe at least once a week and mingle with other people. I found the breathing excercises in yoga and pilates too difficult and they brought onanxiety attacks oddly enough. I had an unusual heart pattern last year they never knew what it was but whilst doing yoga and pilates breathing patterns its started again, so i'm doing hula hooping instead.

I agree i'm probably getting cc'd somewhere, i live with my mum and brother, mum is a celiac but not too sensitive and my brother is a wheatmonster. He's not careful either and never will be, just the way it is, so i've started washing anything before i use it. I realised whilst eating my gluten free cereal a dried coco pop on the side of the bowl i was using from where he'd half assed the washing up. Never again.

The dairy thing, i will see about making my own pro-biotics, it sounds fun and i will se how it goes, or try and find some dairy free ones. I can tolerate lacto-free milk just fine so maybe a mix of both. I should probably cut out chocolate completely then, sigh! No worries though, i found some amazing lemony biscuits wheat free of course to satisfy those cravings.

Never knew about wax on veggies! Will now check! Feels like my life will be checklists from now on, but i don't mind to be honest, better safe than sorry.

Man, you guys have cheered me up, and feel more normal. Thank you so much. *virtual hugs to all*

Yoga, pilates etc also aren't my kinda thing. I think it is medical as well as personality. Have you thought about a more active maritial art? Lots of structure and more active?
I'm months into this problem but now check every label and doubt it is a full list. (((despite any government regulation/s))). Learn about renamed gluten (vitamen E, gums, E400 series etc)). All of this has helped my digestive/skin disorders. Still learning and determined to keep learning (today was what is guar gum where from etc.. turns out its gluten and an alternative to other gluten product / ingredient for bathroom / food products)

I've spent the past few weeks feeling like a leper and a crazy idiot but now know I'm not. If others want to find problem with my physical / internal issues than they will have to find time to hear about it. I'd rather spend a 30 minutes cooking meat & veg than dealing with staff that aren't interested in my allergy/issue. Do/read/learn or die.
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