Posted 13 March 2004 - 09:15 AM
Posted 14 March 2004 - 07:45 PM
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
Posted 14 March 2004 - 08:51 PM
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.
Mariann, gluten intolerant and mother of 3 gluten intolerant children
Posted 16 March 2004 - 12:20 PM
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?
Posted 16 March 2004 - 01:08 PM
Posted 02 May 2004 - 06:39 PM
when I look around, I think this,
this is good enough
and I try to laugh at whatever life brings
because when I look down,
I just miss all the good stuff
and when I look up,
I just trip over things
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