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
      104,345
    • Total Posts
      920,489
  • Topics

  • Posts

    • I am sorry that you are sick!   Unfortunately, all celiac testing requires you to be on gluten.  😔.   Testing is usually not over until you get an actual diagnosis, but it appears that you may very well have celiac disease.    Here is more information: http://www.cureceliacdisease.org/screening/ http://theceliacmd.com/2015/06/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet-3/ in the meantime, you can eliminate dairy products temporarily.  It may provide some relief.  
    • Karen, the iodine test was a test for DH used in the 'olden' days. Iodine would be swabbed onto a spot and then it would be covered with a bandage. If someone had DH the iodined area would break out in lesions. I don't know how but we do know iodine can activate the antibodies. That is why some of us with DH have to avoid iodine in foods until the antibodies have cleared the dermis. OP, if you haven't been tested for celiac you should be and if you have active lesions a biopsy done next to a lesion by a DH knowledgable dermatologist may help in diagnosis.
    • The gluten-free diet (GFD) is the only validated treatment for celiac disease (celiac disease), but despite strict adherence, complete mucosal recovery is rarely ... View the full article
    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,415
    • Most Online
      1,763

    Newest Member
    Ails123
    Joined