I'am Lost

[murphy194951]

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. 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. 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

[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

[gf4life]

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

[Guest gillian502]

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?

[mario]

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..

[jen-schall]

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!