• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

:( 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

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

Guest jhmom

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

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,


Share this post

Link to post
Share on other sites
Guest gillian502


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?

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.. :(

Share this post

Link to post
Share on other sites
Ads by Google:

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!

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


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • It sounds like your hives resolved.  I had a six month bout with them.  Antihistamines really helped.  My doctors are not sure if Mast Cell or autoimmune is the root cause.  
    • My kid has Raynauds.  It freaks her classmates out.  She wears shoes and wool socks all year round and we live in a warm state.  It is autoimmune.  She manages it by layering, turning up the heat, use lots of blanket throws.   I have Hashimoto’s and celiac disease.  So, having multiple autoimmune issues is common.  
    • Well, you do need to replace some things because they are too porous or damaged to remove gluten.  Things like old wooden spoons, scratched non-stick pans, toaster, colander, sponges, etc.  Honestly, the list is long, so try getting a few celiac books at the library or Amazon.  Consider reading through the Newbie 101 thread under the “Coping section”.    You should see some minor improvement soon.  It does take time to heal.  Most  around here will say it takes a year!  
    •   When I woke up from my Endoscopy and was told I definitely had celiac disease the first thing I asked my doctor was do I need to get all new kitchen stuff? He assured me that I did not, and as long as my pots and pans and everything else was washed after being used to cook gluten I would have no problems. Well, I'm 10 weeks into my gluten-free diet and still feeling crappy as ever.  I have not been eating out unless the restaurant is 100% gluten-free (I'm lucky there are several near me).  I am very careful that everything I use to cook my food is thoroughly cleaned at home, but is this really enough?  Did you guys need to replace most kitchenware in order really avoid being cross contaminated?   I'm curious to get some opinions before I spend a bunch of money on new/separate stuff.  Thanks!  
    • They have all given you good advice. Like Ennis_Tx said this is not medical advice. Just some observations. Ennis_Tx mentioned already a good B-complex. But people who have Perncious Anemia low B-12 have "Pens and Needles' feeling in their extremities. Mine was much more pronounced when sleeping. . . while sleeping my nerve ending would go to sleep. This would wake me from my sleep.  I would shake them awake/loose much like a leg that had fallen asleep while awake.  We have all felt that feeling before except the whole side of body's nerve ending would tingle/fall asleep enough to wake me from my sleep. Once taking a homocysteine tablet (B6,b12 and folic acid) tablet call FABB for the abbreviated ingredients under doctor's supervision this "pens and needles' went away. This also happened in my finger and toe tips while awake as if I had pinched a nerve in my back. These sensations are now in remission. Also if you think it is Rynaud's then try Niacin or Niacinamide.  It is a natural vasodialotor and the 'warm sensation" people take when using Niacin especially in a work out supplement is Niacin they add to enhance athletic performance for body builders.. . . because this opens capillaries approx. 10 % more allowing more air into the muscles thus improving their work out. This flushing goes away after a couple days of using Niacin.  The Niacinamide form does not flush the way the Niacin form does but provides the same benefit. Both Niacinamide and Magnesium each lower blood pressure approx. 10% each this way.  But if BP is a real problem for you  take the Homocysteine tablet mentioned above or just Folic Acid by itself. My BP is now normal after taking Folic Acid because it controls' how/what triggers constriction in our blood vessels thus effectively controlling BP. These are some times that I have used to improve my circulation. *** again this is not medical advice just things that have helped me with similar issues.  I hope this is helpful. 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
  • Upcoming Events