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

Recommended Posts

cahill Collaborator

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

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

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

I'm SO sorry something got you! :o

I hope the side effects pass quickly.

tennisman Contributor

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

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

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

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

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

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

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

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

gluten free oatmeal :blink:

dilettantesteph Collaborator

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,542
    • Most Online (within 30 mins)
      7,748

    Carol Zimmer
    Newest Member
    Carol Zimmer
    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

    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
×
×
  • 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.