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

I Can Not Believe I Felt Like This And Functioned For Years!

cahill

By cahill
in Coping with Celiac Disease

Recommended Posts

cahill Collaborator
cahill
Posted

Many of you know my story. I was misdiagnosed /undiagnosed for 40+ years. After finding these forums and learning the tests to ask for and the correct questions to ask I was diagnosed .

I have been gluten/soy free for a long time.

I have not had anything new or different for at least 7 weeks. ( I keep a food diary even now)

Monday night I added a new/different food to my meal. IT GOT ME!!!!

BIG TIME!!!!

The brain fog was first then everything else followed. Now 38 hours later I am dealing with the explosive end ( pun intended :lol: )

I have been down in bed since Monday night.

The emotional roller coaster STILL amazes me. It will take a bit longer for my body and emotions to recover.

The point to my post is;

I can not believe I felt like this for YEARS AND YEARS and still functioned .

How did we do this ???

Many of us for years.

ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.

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

Celiac.com Sponsor (A8-M):


love2travel Mentor
love2travel
Posted

The point to my post is;

I can not believe I felt like this for YEARS AND YEARS and still functioned .

How did we do this ???

Many of us for years.

ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.

That is SO true. It usually takes a very difficult situation in our lives to build our perseverance and subsequently character and strength. We learn such valuable lessons! In fact, it may sound odd to some, but though I LOVE food as much as I do and though I did not feel sick at all eating gluten, it is a good thing I was diagnosed because it has taught me lessons. So has my dreadful chronic pain. I have learned more about myself and others in the past four years than I have in my entire life prior to that. Pain can force you to make serious changes and do serious reflecting. It can create greater awareness of others' feelings, health and so on. I have always been very empathetic but now I see things completely differently. For example, if a person is crossing a street very slowly in front of me I do not roll my eyes but feel compassion - what if that person is in pain?

Learning life lessons can make you stronger BUT it is up to you how you CHOOSE to view these life lessons and what you do about them. You can choose to have a good attitude or you can choose to become bitter. Sure, some days are more painful and difficult than others (we all have those) but to a certain extent we can control how we react.

I find it amazing how in the midst of severe pain one can experience joy and happiness in spite of it. :)

mamaw Community Regular
mamaw
Posted

Hi Chill

sorry for yet another bad reaction... I hope you feel better soon.....I have still some issues when I can eat a food by itself add iit another food & get ill.. Its like Russian Roulette at times...

hugs

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I'm SO sorry something got you! :o

I hope the side effects pass quickly.

tennisman Contributor
tennisman
Posted

Hope you feel better soon :)

Thanks for posting this - ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.

That really inspired me I agree 100 % . I woke up feeling down but after reading this I feel inspired to carry on and do something no matter how I feel :)

Thanks for posting :)

cahill Collaborator
cahill
Posted
  • Author

Thanks everyone

I am feeling a bit better today. :)

Thank goodness for food diarys, that is one food that is now on my "not going to try EVER again " list

sreese68 Enthusiast
sreese68
Posted

I can not believe I felt like this for YEARS AND YEARS and still functioned .

How did we do this ???

Many of us for years.

ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.

Thank you for posting this. Got some hard news last night. This journey I've been on has shown me I can handle it. Your post is very reassuring. I must say that picking up the pieces of our lives post-diagnosis isn't easy. I feel like I missed my 30's due to the effects gluten had on my brain and personality. Just gotta keep pushing on...

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

Celiac.com Sponsor (A8-M):


sallyalewis Rookie
sallyalewis
Posted

Thank you for posting this. Got some hard news last night. This journey I've been on has shown me I can handle it. Your post is very reassuring. I must say that picking up the pieces of our lives post-diagnosis isn't easy. I feel like I missed my 30's due to the effects gluten had on my brain and personality. Just gotta keep pushing on...

I know what you mean. Last week I glutened myself and could hardly move my joints and muscles! How on Earth did I walk around Baltimore last Summer in the 100+ heat?

So glad to be feeling better!

Sorry you were glutened! It's hard to believe anyone could understand how awful it feels. :blink:

dws Contributor
dws
Posted

Many of you know my story. I was misdiagnosed /undiagnosed for 40+ years. After finding these forums and learning the tests to ask for and the correct questions to ask I was diagnosed .

I have been gluten/soy free for a long time.

I have not had anything new or different for at least 7 weeks. ( I keep a food diary even now)

Monday night I added a new/different food to my meal. IT GOT ME!!!!

BIG TIME!!!!

The brain fog was first then everything else followed. Now 38 hours later I am dealing with the explosive end ( pun intended :lol: )

I have been down in bed since Monday night.

The emotional roller coaster STILL amazes me. It will take a bit longer for my body and emotions to recover.

The point to my post is;

I can not believe I felt like this for YEARS AND YEARS and still functioned .

How did we do this ???

Many of us for years.

ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.

Just curious, what food did you try that got you?

Adalaide Mentor
Adalaide
Posted

I got got this week too. I felt so weird and foggy I wouldn't even drive, I was like yeah, that wouldn't be safe. I was driving for several years in that fog. :blink: I wonder now how I didn't kill myself or even end up in some sort of accident.

AVR1962 Collaborator
AVR1962
Posted

I hear ya'! I said something very similiar the other day. It is amazing what the body takes and tries so hard to deal with. I think when we are in the midst of it we don't realize how sick we are as the whole process is gradual. I think it is once we get well and can reflect that we realize just how sick we were. If I look back to where I was a year ago, there is no comparison to what I am today......I am actually enjoying life again......I can work in the yard without having to take breaks or having every muscle in my body sore the next day. We're still going to run into those foods that don't set well with us but at least now those are temporary setbacks. Congrats to you!

cahill Collaborator
cahill
Posted
  • Author

Just curious, what food did you try that got you?

gluten free oatmeal :blink:

dilettantesteph Collaborator
dilettantesteph
Posted

You may be one of the 10% or so who reacts to avenin in oats just like to gluten. When I tried gluten free oatmeal I was sick for 2 months. I didn't take that little warning on the package seriously and had half a bowlful. In hindsight I should have tried a very small amount the first time.

I was misdiagnosed until I was 48. I was sick as long as I can remember. I still went to school and work, and did what I had to do. That was until I have the explosive end issue and couldn't get very far from a toilet.

My kids got diagnosed earlier and want to stay home when they are glutened. They can't handle homework with brain fog etc.

I think that you get way tougher having to function when you are constantly suffering from symptoms. I like not having to be so tough now.

I hope you are feeling better soon.

MitziG Enthusiast
MitziG
Posted

I think the same thing every time I get glutened- wondering how I will survive the next 10 days! And then I remember I survived 30 years that way..... once you start feeling GOOD, it is a difficult thing to go back to! I guess for a lot of us, feeling bad was just "normal"!

rustycat Rookie
rustycat
Posted

I think that you get way tougher having to function when you are constantly suffering from symptoms.

The hardest thing for me was being told I was a hypochodriac by many people, including doctors, over the years. Apparently, my biggest problem was always stress. Gee, all I needed to do was relax and all the pain should go away. LOL.

dws Contributor
dws
Posted

gluten free oatmeal :blink:

I can't tolerate oatmeal either. It really makes me feel lousy, probably the intolerance coupled with the way it expands in your gut. Bulk plus inflamation doesn't feel good. I had the same problem pre diagnosis when my doctor told me to try to add fiber to combat what he mistakenly thought was IBS and I took metamucil. Same feeling as when I eat oatmeal.

scaredblossom Rookie
scaredblossom
Posted

The hardest thing for me was being told I was a hypochodriac by many people, including doctors, over the years. Apparently, my biggest problem was always stress. Gee, all I needed to do was relax and all the pain should go away. LOL.

I'm beginning to wonder if this is why I have always been in so much pain in my joints, and my PCP kept telling me I needed to lose weight and I would feel better! Yes I was 30# over weight but it fluctuated so much! I had GERD symptoms that he brushed under the rug and the final straw was the intussusception that was found during an ER CT scan, he wanted to brush that off and I demanded to see a GI specialist so here we are...glad that I might possibly have a dx now!! Makes me feel somewhat better to know I might be able to have some rest to the years of pain!

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. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
    3. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was...
    4. Amy Barnett
      - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

      What is the best liquid multivitamin for celiac disease?
    5. Scott Adams
      0

      Quick Gluten-Free Shrimp Stir-Fry With Crisp Vegetables

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    avery144
    Newest Member
    avery144
    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

    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      Curious question

      By Jmartes71 · Posted

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      Question

      By Amy Barnett · Posted

      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      Alarming

      By Jmartes71 · Posted

      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.