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. trents
      - trents replied to Healthierbody2026's topic in Introduce Yourself / Share Stuff
      1

      New at gluten sensitivity

      Welcome to the celiac.com community, @Healthierbody2026! Just let me check something with you because there is still much confusion in the general population regarding the terminology associated with gluten disorders. You say you have recently been diagnosed with gluten sensitivity. Do you mean NCGS (Non Celiac Gluten Sensitivity) or Celiac disease...
    2. Heatherisle
      - Heatherisle replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      35

      Blood results

    3. Healthierbody2026
      - Healthierbody2026 posted a topic in Introduce Yourself / Share Stuff
      1

      New at gluten sensitivity

      Hi I was recently diagnosed with gluten sensitivity I’m very new at this and trying learn everything I can about everything dealing with this any advice suggestions would be appreciated
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

      I take Niacin, bilberry, Omega threes, zinc, selenium, and Vitamins C and A for eye health, skin health and digestive tract health. The skin, digestive system and eyes are all derived from basically the same sort of cells. Niacin is extremely important to keeping these tissues healthy. Niacin has be shown to prevent cataracts and improve eye...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

      Thankyou. I have cyclosporine 0.05% OP single use drops and Erythromycin ophth ointment 3.5 Gmail for eyes. Dermatologist gave Pimecrolimus cream 1% and Clobetasol Propoonate USP 0.05% it doesn't help at all.i do see a difference taking Yarrow Pom but its too expensive!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,462
    • Most Online (within 30 mins)
      7,748
    jjwejackso
    Newest Member
    jjwejackso
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      New at gluten sensitivity

      By trents · Posted

      Welcome to the celiac.com community, @Healthierbody2026! Just let me check something with you because there is still much confusion in the general population regarding the terminology associated with gluten disorders. You say you have recently been diagnosed with gluten sensitivity. Do you mean NCGS (Non Celiac Gluten Sensitivity) or Celiac disease (aka, "gluten intolerance")? The symptoms of these two conditions overlap. Celiac disease has an autoimmune base and so, there are tests that can be run to detect antibodies in the blood that are produced. Celiac disease does damage to the small bowel lining because of the inflammation present from the autoimmune attack. This is not the case with NCGS for which there are no tests. Celiac disease must first be ruled out in order to arrive at a diagnosis of "gluten sensitivity". 
    • Heatherisle
      Blood results

      By Heatherisle · Posted

    • Healthierbody2026
      New at gluten sensitivity

      By Healthierbody2026 · Posted

      Hi I was recently diagnosed with gluten sensitivity I’m very new at this and trying learn everything I can about everything dealing with this any advice suggestions would be appreciated 
    • knitty kitty
      Related issues

      By knitty kitty · Posted

      I take Niacin, bilberry, Omega threes, zinc, selenium, and Vitamins C and A for eye health, skin health and digestive tract health.  The skin, digestive system and eyes are all derived from basically the same sort of cells.  Niacin is extremely important to keeping these tissues healthy.    Niacin has be shown to prevent cataracts and improve eye health.  Niacin is turned into tryptophan which is necessary to heal the digestive tract.  Tryptophan is used to make Serotonin, a very important neurotransmitter in mood regulation.  Those with Niacin insufficiency become irritable and easily upset, angry, even. Niacin improves skin health.  The flushing of Niacin opens the smallest blood vessels in the skin so that waste products can more easily be removed.  I have Dermatitis Herpetiformis.  Niacin helps drain away those built up antibodies in the blisters and improve skin health.   Bilberry contains lutein and zeaxanthin and other anthocyanins,  potent antioxidants that help protect the eyes from macular degeneration and cataracts.  Bilberry has sGLT1 and GLUT2 which help to lower glucose levels by removing excess glucose from the bloodstream.  High blood glucose levels are bad for eye health.   Omega Threes are important to provide relief in dry eyes.  You are familiar with how oil floats on water.  Same thing happens with eyes.  Omega threes provide the oily layer that protects water from evaporating from the eyes causing dry eyes.  Omega threes in olive oil, sunflower seed oil,  and flaxseed oils will help improve dry eyes. Vitamin A and Riboflavin B2 are important in this function as well.   None of the medications I was given improved my dry eyes.  I increased my Omega threes and Vitamin A, and had improvement very quickly. Selenium and zinc are important in skin and eye barrier functions, too, and are important to preventing infections. When I take 100 mg of Niacin every three hours (but not more than 500 mg/day), my skin and eye health improves.  If one is deficient in Niacin, the flushing effects may be uncomfortable, but ride it out, continue taking Niacin and the flushing goes away as niacin stores inside cells are repleted.  When flushing, don't scratch!  Use pressure applied over a bigger area above the itch.  I wrap up in a towel or blanket to create the counter pressure.  The flushing goes away the longer one takes Niacin.  Don't use Niacinamide (the non flushing form of Niacin).   Other vitamins that improve eye health are Vitamin E and Pyridoxine B6 and Thiamine B1.  Most Vitamin E sold is derived from wheat germ, so find another source of Vitamin E.  I used Evening Primrose oil, also a source of healthy Omega threes and helps with female problems like perimenopause  and menopause symptoms. Do be aware that antifungals and antibiotics (as are frequently prescribed) destroy Thiamine.  Immunosuppressive drugs can suppress production of tTg antibodies.  Supplementing with thiamine above the RDA is safe and nontoxic.  RDA were set as the lowest amount to prevent illness.  Optimal health is seen in higher amounts.   Do talk to your doctor and dietician about supplementing essential nutrients.   References: https://pubmed.ncbi.nlm.nih.gov/39183990/ https://pubmed.ncbi.nlm.nih.gov/41156490/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7602486/
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Thankyou. I have cyclosporine 0.05% OP single use drops and Erythromycin ophth ointment 3.5 Gmail for eyes. Dermatologist gave Pimecrolimus cream 1% and Clobetasol Propoonate USP 0.05% it doesn't help at all.i do see a difference taking Yarrow Pom but its too expensive!
×
×
  • 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.