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'am Lost
0

6 posts in this topic

:( I found out about celiac disease last Nov. I hade to retire at the age of 53 because of health issues. I had a heart attack in 1999 but stayed working until 2001, which I was told to get out of constuction which I've been doing for 33 years. At that time I was having alot of bone pain , which I thought I would find out what was wrong so I seen another doctor, I've had high alkline phosphate for along time. No doctor ever persued it they would always check me for hepitias which I didn't have. This doctor said he would find out why they where so high and that's when I found out that I had celiac disease, I have osteoperosa's and a bone disease. I can't stand for along time and wake up at night with so much pain. :blink: I didn't know why I had all this bone pain, the doctor said it was from the disease and I might feel better in a couple of years, the other doctor told me I have celiac disease the thrid stage, but checking into this I haven't heard of this thrid stage I have asked about this for a long time with out results, Has anyone out there heard of this. :unsure: I like this site and wish all of you people out there to try and have a wonderful life and thanks for sending in your storys , it's a great thing to let others know about your issues so we can all relate to ares if you have heard about this third stage let me know thanks Mike
0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi Mike,

I am sorry to hear about your health problems. In all the information I have read about Celiac's disease I have never heard of it being in stages. Maybe you should call the doctor and ask him what he meant by that and ask him to give you some literature on it or where he found his information. Did he seem knowledgeable about Celiac's?

I hope you find some answers soon and I hope you begin to feel better.

Take care and God Bless :D

0

Share this post


Link to post
Share on other sites

Could he possibly have meant that you were in the thrid stage of damage to the intestines? There are different levels of damage. This is how they look at the intestinal damage:

0- (no damage) healthy tissue

1- (no apparent damage) infiltration of immune cells called intraepithelial lymphocytes

2- (minor damage) lots of intraepithelial lymphocytes

3- (destructive damage) flat villi

4- (total destruction) no villi

So if you are at stage 3 then you have a lot of damage and your villi are flat. This is reparable, but you will need to be very strick with your diet and try to avoid as many accidents as you can. It will also take a while to get real relief from your symptoms, as there is a lot of healing that needs to be done. You can also expect to be off dairy until the villi return, and you may also have some problems digesting sugars. I would suggest a very simple diet of rice, chicken, fish and soft veggies for a while. Go easy on the fruits (especially anything acidic) and you may also want to consider taking some gluten free digestive enzymes. I've used Pioneer Digestive Enzymes and Herbs, adn they helped a lot. But I had very minimal damage. I'm not sure the lab checked me for level one or two, they just said my biopsy was negative for Celiac because I was not at level 3. The doctors want you to wait until you are in the worst stages of the disease before they will recognise it. That is not fair. I'm sure that you would have loved for them to find this years ago. To have the damage you have you would have had to been sick for a long time.

I hope this helps you understand what they doctor probably meant.

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Mike,

You mentioed you have bone pain that prevents you from standing for long periods of time. I'm curious about that, since I also have deep bone pain in my very low back, specifically the sacroiliac joint, and I cannot stand or walk for more than 12 minutes or so without my back feeling tight and pushed in from behind...it's very weird. I also have deep bone pain back there and in my hips and pelvis if I lie down or sit too much! So I'm at a loss, too, as are you, about all of this. Does this resemble your problem in any way, and what type of doctor did you see about this?

0

Share this post


Link to post
Share on other sites

I saw my doc draw me a pic of my villi and, it was sort of wavy looking so I pressume I have the stage three also..all I can eat is rice, banana, chicken, apple sauce, potato..have to be very carefull.. :(

0

Share this post


Link to post
Share on other sites




heh, when my doctor drew the picture, it was a flat line. poor villi! I had some really rough going and now I'm starting to be able to stomach much much more, so it really does get better. everyone hang in there!

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
      103,627
    • Total Posts
      918,391
  • Topics

  • Posts

    • amalgam dental fillings - remove or not?
      Yes, I meant mercury not lead, thank you for the correction. That's what happens when I stay on the computer until late at night.  The symptoms I have now resemble my gluten reaction and I know it's almost impossible that I would be getting glutened. I remember someone here mentioning that he/she had amalgam fillings removed and it helped, but that was few years back. That's why I posted it here. 
    • Newly diagnosed and totally overwhelmed
      akohlman--I am exactly 1 month from being diagnosed and still going through cleaning out of all the gluten foods from my life. I have really bad Dermatitis Herpetiformis but other wise I had no reason to think I had something like Celiac Disease. That being said, I TOTALLY understand. For me... its hard to be sick and not feel sick if that makes sense.....   I'm going to make the changes. I'm going to live a gluten-free life but like you... I STILL am devastated. I'm overweight... so obviously I don't have a healthy relationship with food, LOL, so I'm DYING at the idea of never eating Pizza Hut, Chili's Pasta, Red Lobster Pasta, McDonalds, etc. I don't care what anyone says.... that is a HUGE adjustment for me and I'm still reeling from the "loss".   That being sad.... I have 3 children and a husband depending on me and I'll do all I can to lengthen my lifespan so.... Here is to new journeys.   YOU ARE NOT ALONE in your sadness!
    • puffiness in face
      The way to fix food intolerance symptoms is to stop eating the food causing the symptoms.  Dark Angel is right, there are very few tests for food intolerances.  Mostly we have to test ourselves through diet experiments.  Typically an elimination diet of some sort is used.  Eliminating food groups is one way, or cutting back to just a few foods and building from there is another.  Changing your diet is the way to go.
    • Newly diagnosed and totally overwhelmed
      Hi akohlman, It is quite an adjustment.  But it isn't a bad change.  While you have to give up some foods you may also end up finding other foods you really enjoy.  And most likely you will be eating a more nutritious, healthier diet than many of your friends do. Try to stick to whole foods you cook at home for a while.  If you want to eat out you can take food with you, or spend some time on the web searching out gluten-free restaurants on your area.  But to get started learning, it is best to cook you own food.  Meat, veggies, eggs, nuts and fruit should be the main foods you eat.  Maybe dairy will work for you, maybe not. It can take months for the immune reaction to stop and your body to heal enough to absorb nutrients properly.  It is good to get your vitamin and mineral levels checked so you know which might be low.  Even a tiny crumb of gluten can make us sick.  Cross contamination is a real problem.  And since the immune reaction doesn't stop when the food leaves your body, you have to be careful what you eat/drink.  But after you have been doing the gluten-free diet a while you get used to eating different and it becomes the new normal.
    • puffiness in face
      I was told by the allergist that there are not tests currently for food intolerance, just testing for allergies.  Maybe it depends on the practitioner that you go to.  That would be a relevant question as well as histamine intolerance testing/treatment when choosing a practitioner.  It is helpful to keep a food log with reactions for reference for yourself and the health care professional that you might consult.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,718
    • Most Online
      1,763

    Newest Member
    Flora Simpson
    Joined