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Dear List,

Thanks for the abundance of responses to my e-mail dated July 24.  

I had four questions for the list.

#1  Several people wrote to me to tell me they too had experienced a gluten indulgence with severe setbacks.  Some of the suggestions  included going back on a very limited diet until my system calmed down.  Typically others find fruits, cooked vegetables, rice, eggs, goat milk, coconut milk, goat yogurt, jello, chicken, gluten free broth to be most helpful. Those with  neurological symptoms found it took longer for nerves to heal.

#2  I did not receive any answers about my question if there are any correlations between high lipase levels and high anti-gliadin levels.  

#3.  Many people have had to have CAT scans.  Those with iodine allergy had reactions when taking the IVP dye, but found the prednisone and bendryl to make taking the iodine dye safe.  Some experienced flushing, but this is normal.

#4. Several people have heard of "leaky gut" syndrome.
 Suggestions include flax oil, enzymes, pro-biotics. A SC diet was also recommended, but I will have to send the information in a separate e-mail.

Resources:

a number of resources were given to me and I would like to pass those on:

For Leaky Gut see www.mdheal.org/leakygut.htm 
Dr. Tom O'Bryan at [log in to unmask] ; 

A book called "Dangerous Grains"

Lab that looks for alternative genetic testing called
Enterolab, which uses Ken Fine's research on HLA DQ 1 and 3. Several people said they were negative on HLA DQ 2,8 but positive on Fine's labs for HLA DQ 1 and had microscopic colitis or neurological symptoms. See www.perskyfarms.com for information on microscopic colitus. 

Research on Neurological symptoms associated with Celiac Disease, and some possibility that gluten intolerance, or those without typical HLA DQ 2, 8 genes react with neurological manifestations.  See Http://jnnp.bmjjournals.com/cgi/content/full/72/5/560 .

Names to watch for future research on Celiac genes and possible treatments are Dr. Fasano who some one said was working to discover a receptor blocker.  Also an individual named Latov, who is making some research connections in the area of neurological symptoms and gluten intolerance.
No web was given to me, but the sender said his work will come in if you google his name.

Two excellent patient/consumer awareness web sites www.Perskyfarms.com ;
www.merck.com 
www.celiacsonline  


In addition please type in the name "Olive Kaiser" her site is most informative.  I will be back with her address later.

Other people have also suggested trying these foods:
Gluten free vegetable broth, red and green grapes, Trader Joe's Mayonnaise, sweetener free applesauce, artichokes, persimmon and pomegranate fruits.


I hope I have put the majority of the resources I received from my post above.  I must look up Olive Kaiser's specific and very informative post and send it in a separate e-mail.
I also heard about another diet, and will send that as well.

I want to thank all of you who have written to me to lend support.  I really appreciated that during this difficult time.  I appreciate knowing that there are many of us who do not have celiac but are gluten intolerant, and that we must take our illness seriously.  We must not slip off our diets in a casual manner, just because the gene research, or lack of biopsy rules us out.  I like what one person said about all these tests.  "She said they rule you in, but can't rule you out."  We know how sick we get.  Some day there will be more information and research, and we can advocate for that research to be done.

Overall my experience leaves me to feel that we must each continue to educate our doctors about celiac and gluten intolerance.  I suggest we each take articles to our appointments, best if they are from refereed journals, since AMA docs are likely to listen to other AMA docs.  However, some good research from other sites collected in mass should also be  helpful in helping our doctors to consider the possibility that other genes operate in gluten intolerance.  The natural paths are showing good correlations, and the neurologists seem to be receptive to the impact of gluten on neurological symptoms.

Will be back with the other information. 

Denise

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