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

Hi! Support And Friends Needed.
0

7 posts in this topic

Hi.  My name is Catie and I have been sick a long, long time.  I will try to condense my story and make it as clear as possible.

 

My tummy has always hurt.  At 25, it got dangerous.  The abdominal pain was really scary.  The med that helped was Bentyl, but it was not a cure or even that effective.  Sometimes, I would take a prescription pain killer leftover from my DH's kidney stones.  Mutliple MD's, a positive celiac panel,  following a strict gluten free diet DID NOT improve  the pain AT ALL, and then I landed in the hospital.

 

The gastro told me that I did not have celiacs and I went back on gluten.  The major trigger I could identify for the previous pain was Splenda.  Came off Splenda, and the pain *mostly* went away, but I have diarrhea  EVERY DAY.  This went on for 2 years.

 

Fast forward to the end of January.  I had a checkup at my regular MD's office and I asked him if my tummy pain would ever go away.  He reminded me I had tested positive for celiacs and suggested I go back to gluten free.  

 

In the past week and a half, the diarrhea has been remarkably better, but not gone.  Bowel distention is improved, my girlfriend says it looks like I lost at least 2 inches around the middle.  I am doing more than just gluten free because I really, really want to feel better.  

 

So, I made eggs last night in a cast iron skillet.  Awful.  DH has cooked many a pancake in it.  The pain was so bad that 2 Bentyl took the edge off but I still was super restless, could barely sleep and awoke to MORE tummy pain.  Egad.

 

I understand that this is a process and takes time  I am ok with that.  I feel like I need an older sister.  Does that make sense?  Just a friend to kind of mentor me thru this process.  I am grateful to have found this forum but am nervous about posting as I don't really know the etiquette of forums boards.  Is it OK that I am a newbie and I start a thread, that kind of thing?

 

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome,

 

You find out, on the forum, that other people have experienced the very things you do.  We all bumble around a bit at first and learn the hard way!  I wish you well on your recovery.

 

D

0

Share this post


Link to post
Share on other sites

You're in the right place!  This place has provided peace of mind many a time.  Post any time!

0

Share this post


Link to post
Share on other sites

Hi Catie and Welcome!

 

You're definitely in the right place!  Collectively, we can be your big sister and get you through this!  The first few months are the hardest but once you realize how much better you feel you'll know it has all been worth it.  Poke around on the forums - there is tons of good information in here - and post whatever questions you have. 

0

Share this post


Link to post
Share on other sites




Thanks y'all.  I really appreciate it!  xo

0

Share this post


Link to post
Share on other sites

Welcome to the board! You will always find friends and support on this forum. Many of have been on this site for years because we find this kind of community support is incredibly important and also because it so important to help out others - we were all in your shoes at one point.

 

Remember: it may be hard now, but once you get the hang of it you will feel amazing!!

 

Welcome! Search around on the board and feel free to ask questions!

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
      104,678
    • Total Posts
      921,700
  • Topics

  • Posts

    • OK so been to the doctor, they've sped up my referral and I should get the appointment booking form in the post shortly. They've said stay off the gluten until I have a date for the appointment then in the weeks leading up to it go back on - thoughts? I seem to be getting some strange symptoms at the moment that have only happened since trying to remove gluten, do these sound familiar to anyone? dry forehead, just starting to go red \ itchy in places. Treating with E45-type cream tender scalp and sides of head, almost like a pulling feeling and a bit sensitive to touch. Scared this one matches the symptoms of GCA, a particularly nasty autoimmune disease that can lead to blindness  one eye watering and associated fuzzy vision at times, trying to reassure myself it isn't blurred vision due to the point above sometimes bit of a lump in throat sensation, seems to come and go Been reading that some people can't handle rice - I was OK with it whilst eating gluten but have been having it for lunch each day and seem to get worse around 4-5pm so could that be a culprit? How long after coming off gluten would I be able to say I'm at a baseline to know if feeling ill is down to "glutening" vs. blaming it on the body adjusting to the change in (lack of) gluten in food?
    • First of all, welcome to the forum! it's good to have you here. Secondly, I can really relate to the fatigue portion.  it really hadn't affected me until everything hit the ceiling medically for me.  I was constantly tired all the time, and waking feeling rested in the morning. Prone to depression and anxiety, definitely.  It drove me nuts for those first few weeks.  That's when I decided to try going off the gluten to see what happened.  I still dealt with the depression, anxiety at crazy levels, and inability to focus/concentrate, but it had gotten progressively better.  The anxiety got so bad I would have panic attacks in public areas which only ramped up the anxiety because people saw what was happening.  I would encourage you and your doctor to do a full Celiac panel before you decide to try the gluten free diet.  I had my blood work done after I was off gluten for about two months or so.  Thankfully, my levels were still high to register at least a gluten sensitivity.  Since going off gluten for almost a year now, things have started to finally appear "normal".  Whatever normal means for me now.  As I am healing from the 30 years of glutenizing, I combined both natural methods with the medical methods.  If you are interested in the different avenues of natural methods, I would be willing to share with you.  I will be praying for you as you go through this journey. Let me assure you, you are not alone in this journey.  Depending on family dynamics, they can be a great source of support.  This forum is also a great place to bounce thoughts or concerns off of.  Good luck.
    • I doubt it. I would think that would be a questions for the company that make them.    But if smoking makes you feel bad....and you are able to quit for several weeks at a time....why go back to it?
    • Hi. I've noticed that after a break of smoking (2-3 weeks) I feel bad, when I begin to smoke again.  Maybe they contain some additives with gluten??
    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,674
    • Most Online
      3,093

    Newest Member
    Miss_G
    Joined