Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I Can Not Believe I Felt Like This And Functioned For Years!
0

17 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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. :)

2

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

I'm SO sorry something got you! :o

I hope the side effects pass quickly.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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

gluten free oatmeal :blink:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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"!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,681
    • Total Posts
      921,725
  • Topics

  • Posts

    • I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
    • Yes, I only eat one meal a day. Sometimes salad or fries or whatever I can find. And thanks for the replies again.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,680
    • Most Online
      3,093

    Newest Member
    Misalina
    Joined