Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recommended Posts

cinda Rookie

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

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

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

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

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,  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

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,176
    • Most Online (within 30 mins)
      7,748

    Ceekay
    Newest Member
    Ceekay
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...