Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

~~venting~~

cinda

By cinda
in Coping with Celiac Disease

Recommended Posts

cinda Rookie
cinda
Posted

i am so frustrated right now.. i have been trying so hard for only a month now.. went out of town... thinking i have maybe been cross contaminated.... i can deal with that... i can deal with the sick, tired, achy body, headache, nausea, .. what i can't deal with is my friends and family... "why are you sick again"... " are you sure this is what you have?" "seems like you have not gotten any been better" "i haven't noticed a change in you" "shouldn't you be better by now" maybe i expect too much... and i am to the point of not telling anyone anymore when i am sick... but i am so grouchy... and ready to pounce.... edgy... kinda hard to hide..

no i don't always feel like this.. i have felt great the last couple of weeks... i try to explain this.. and i get the canned reply's.. "well whatever, seems like you are still sick all the time"... for the first time in years the bathroom doesn't run my life... my jeans fit.. my little jeans fit.... it is like they don't notice the good... only when you are sick... i have given my best friend this site addy and my mom... she read things on here and said oh yeah that is you... and still i get all the remarks like i did today... and bless my mom... she keeps telling me.. so and so is on this vitamin or this health food and now they are cured... she knows of so and so and there sister, mom, grandpa, dad, niece, blah blah blah... they are cured now ... it is never first hand... i have told her over and over... this is a way of life... i accept it.. if i can .. can she try... maybe i am just so on edge that i am reading more into it... it has been barely over a month now since i have been diagnosed... and yes i have still have been sick a lot.. but the good days far out weigh the bad ones... them doubting me.. makes me doubt myself... i just wanted to vent... i read everything on here i can find.. and it helps.. and makes me feel better... like i am not crazy... or feeling sorry for myself... i see it does and will get better... thanx for being there .. all of you...

cinda

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

I know exactly how you feel. It's like they think you should be instantly better and ignore all the good and it is disheartening. You are not crazy and it's not in your head. Even the little bit of improvement by now should be so encouraging for you :) We are here to support you and share your feelings anytime and if you ever need to talk just email me.

Nantzie Collaborator
Nantzie
Posted

Cinda,

First of all, big {{{HUGS}}} to you. I still don't know for sure if I have celiac or any other gluten problem, but I've been dealing with the symptoms of it all my adult life, as well as what can be very painful scoliosis. For some reason, healthy people don't have any concept of what it is like to have health issues every single day for years on end. Because they don't see something, like a wheelchair or a huge surgery scar, they seem to think that it can't possibly be true. I think they also feel helpless and want us to be well, so they try to talk us into it somehow. :blink:

I wish I had some answers for how to deal with all of this, but I'm going through the same exact thing with my family. I've pretty much thrown up my hands with the whole thing and have vowed not to talk about my health with any of them. Haven't seen them since I decided that, so not sure how that is going to go, but I'm just fed up with the whole thing.

Sorry I couldn't be more helpful, but I just wanted you to know that you're definitely not alone.

Nancy

floridanative Community Regular
floridanative
Posted

Well at least I see that I'm not alone in dealing with family members that are less than supportive. My own Mother was going to ask to get tested for celiac disease when I told her I may have it and it's genetic. Well once I elaborated about the diet - for life - that was the end of her interest. She will never be tested no matter what so I won't waste my time nagging her about it. I think all I can do is print several articles and send copies to my parents/siblings/cousins and tell them to please read so at least they are informed. The other thing I can do is be grateful that I don't live in the same state with my family. The distance is a blessing when it comes to this new chapter in my life.

jerseyangel Proficient
jerseyangel
Posted

Floridanative, Gosh, I could have written your post word for word! The 15-20 yrs. or so that I was "always sick", I think they all thought I was crazy or something--I don't really know. Now that I finally know whats wrong, they don't seem to really get it or really try, for that matter. And my family is what you would call "normal" --we get along fine but where illness is involved, it gets a little weird. Hard to explain but living in another state is definately a good thing especially while going thru all this.

floridanative Community Regular
floridanative
Posted
Floridanative,  Gosh, I could have written your post word for word!  The 15-20 yrs. or so that I was "always sick", I think they all thought I was crazy or something--I don't really know.  Now that I finally know whats wrong, they don't seem to really get it or really try, for that matter.  And my family is what you would call "normal" --we get along fine but where illness is involved, it gets a little weird.  Hard to explain but living in another state is definately a good thing especially while going thru all this.

<{POST_SNAPBACK}>

Thanks jerseyangel. I have only been sick for about a year (so I feel lucky) but have only known really for 7 months. And I can tell my family thinks celiac disease is the weirdest thing they've ever heard of - and I agree with them. But that doesn't mean it doesn't exist because they've never heard of it. They live in their own little world (sister and brother all live within three miles from parents) and if they don't like something they hear they just pretend it's not true. Really quite sad but I can't worry about that since it's really more their problem than mine. I'm already tired of this whole medical testing process and I'm not even on the gluten-free diet yet. My Mother was so relieved when I called her after my doc visit yesterday telling her my biopsy is now in Jan. So now my dietary needs won't ruin Christmas after all.

It's bad enough I'm getting such conflicting information from different doctors. I don't have the patience for unsupportive friends or family. I don't want to isolate myself but really, the less I'm around people (save my darling hubby) the better off I am right now. I'm going to try St. John's Wort again though it gave me headaches the only time I tried it before. If that doesn't work, I may ask my pcp for an rx for Lexapro. I've never taken anything like that but my job is high stress right now and with this medical stuff - well it's all just too much for me to handle.

jerseyangel Proficient
jerseyangel
Posted

I hear ya! At least we both lucked out in the husband dept :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cinda Rookie
cinda
Posted
  • Author

thanx everyone ... i needed that.. as silly as that sounds i just needed to vent... here is my long story it's long so you might not want to read it.. but well i feel like i want to tell it .. and this place seems understanding ...i have been sick off and on for years... almost 12 ... my appendix ruptured 3 months after i had my first son .... so they did a right colectomy so i have half my bowel... i have went from doctor to doctor over the years.. all the symptoms we all have... this last 2 years i had enough... i have been pregnant 8 times... and i have 2 beautiful boys... but i had a fetal demise a year ago in sept. i was 5 months along... and it broke my heart... this was the second one ... and we were debating on one more try... because together we have no children... and he has no biological children of his own... but then i got sick again... bleeding for 4 weeks straight on the pill.. passing clots.. cramping... and in june i had to have a hysterectomy and well i did it because they told me it would help me... the bleeding was out of control.... the headaches.. the bloating... cramping... the sick tummy...endless trips to the bathroom .. the mystery rashes .. and well it didn't help... i got worse... and really it was the last straw... and when i went to the doc this time.. .. a different doc again... i cried and i stood my ground... and she listened... and she checked everything she could think of... and then she checked more.... and when the labs came back this time .. she called and said she thought she knew what was wrong... and so we did more labs... the right ones i guess.. because she called and said we stuck gold... i know what is wrong with you... so see i have been to hell and back.. like most of you... and a good day is wonderful.. and a good week is fantastic... simple fix really... wish we had found it sooner... my doc told me... the reason i would go off and on with this is because stress kicks it up and tiggers worse episodes... that and being sick.. and run down also flares it up ... have any of you been told this?.... she told me having had the right colectomy masked the celiac because everyone assumed i was sick from that... she also told me i am so iron deficient that is probably why was bleeding so bad... when you are anemic you bleed more... she told me that is why had miscarried so many times... and why i did it twice in the second trimester when things were good one day and the baby gone the next... no nutrients for the baby... they checked everything they could think of and had no answers for us...i dunno... why i get so upset when i get sick...or why i let my family and my friend get to me... i have been worse.. and at least i know what is wrong with me.... for the first time in years i do feel better.... sorry so long... and well.. we all have our stories... and there is always someone worse off... i just wanted to get it out. thanx for letting me

cinda

Nantzie Collaborator
Nantzie
Posted

Cinda, I'm so sorry for all you've been through. I've gone through some difficult things in my life, and I wanted to share some advice that someone else gave me --

Remember that your pain is yours. It doesn't matter that someone else may have gone through what you or anyone else see as more or worse. Pain is pain, whether it is emotional, physical, mental or physical. It may be a strange thing to say, but pain is very personal. You shouldn't feel that you have to justify or verify your pain any more than you should feel that you have to justify or verify your love.

Like I said, it may be a weird thing to say, but those concepts and ideas really got me through a lot. I hope it helps.

Nancy

floridanative Community Regular
floridanative
Posted

cinda - I'm so sorry for all you've been through. It's people like you that have been suffering for so long that make me realize that as frustrated as I am, I am better off than many. I have only been sick just over a year and I haven't been that sick compared to many others I've read about here. I'm glad you finally got the answer you searched so long for.

Nantzie - thank you for sharing that excellent advice about pain. What you said about pain being personal was so dead on. Thanks for your post.

Guest gfinnebraska
Guest gfinnebraska
Posted

Ditto to all you said. I have always had the reputation of "always being sick." NOTHING makes me madder than when someone says, "You're sick again? You are ALWAYS sick!!" Hello??? Like I can HELP it??? Want to trade places for ONE day? See what MY life is like?? *sigh* I am sure everyone on here completely understands. I am past the "are you sure you have it?" or "won't it go away??" part of my journey, but it still makes me mad when I am accused of being "too picky" about the food I order or eat. Excuse me?? Too picky? There is NO such thing as too picky when you are avoiding all the sickness that would follow being contaminated. :) Ooops! This turned out to be a rant of my own!! Anyway ~ we understand you and are here for you!!! :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Flash1970
      - Flash1970 commented on Scott Adams's article in Additional Concerns
      1

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

      He should have gotten millions. How much is your life worth?
    2. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      @cristiana, I react the same way. Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies. This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies. We have opioid receptors throughout our...
    3. knitty kitty
      0

      About Celiac Remission

    4. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      need help understanding testing result for Naked Nutrition Creatine please

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated. So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly. I came off dairy completely next and it worked like a charm...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,107
    • Most Online (within 30 mins)
      7,748
    Maggie1349
    Newest Member
    Maggie1349
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      nothing has changed

      By wellthatsfun · Posted

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.