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This is party two:



#14)  Celiac disease or celiac sprue is an autoimmune disease.  It is caused by defective genes.  It is one of at 1east 257 auto-immune diseases.  These are diseases that for the most part have no cure.  It a little like being "a little bit pregnant" There are no one set of symptoms.  Every one who suffers from CD has a different set of symptoms.  The treatment for all is the same.  Must go on a 100% gluten-free diet.

 

#15)  I can relate to your frustration here.  What about contacting the Center for Celiac Disease and asking for information that shows that celiac is a progressive disease when left untreated, that when triggered the symptoms may be mild, but best not to wait until there are life-threatening consequences.  How about that post re:  Non-Hodgkin's lymphoma, scary huh?   The CFCR is at the University of Maryland in Baltimore, and the lab phone number is:  1-410-706-3734.  Sorry I don't know the Drs. phone numbers, but this might get you them.

 

#16)  Yours is such an interesting question, and I hope you will summarize.  When I have wondered the same sort of thing about whether different -healthy, non-celiac- people absorb different nutrients, perhaps in different quantities,  the effects would have to be similar to the effects we celiac people have...other than the flattened villi.    If so, it's small wonder we hear so much about Doctors failing to recognize celiac symptoms.  Obviously I don't know, I am just wondering as you are, although I don't know of any cases that might be mild, such as you see in your Dad.  After the gluten free diet helped me so much, I began seeing it in others around me as you do.  My brother's Doctor put him on the g.f. diet for a week BEFORE doing the blood tests, so he thinks he does not have celiac disease.  But I think he has!  It is a real puzzle.

 

#17)  I cannot give you source information, but I can give you personal information.  I was not symptomatic until I was over 50 years old.

    My son was diagnosed at age 16 months, after several months of GI symptoms.  At age 14 he no longer reacted to gluten with symptoms, but then, and now (age 32) he tests positive on blood tests for Celiac.

    My daughter was gluten free by her 1st birthday.  At age 12, she no longer reacted to gluten but tested positive for Celiac.  She is now 31, has not remained gluten free, despite testing positive for Celiac, and has severe problems with asthma, allergies, and skin conditions.

 

 

#18)  Here is a journal article that is really technically written. Something to keep in mind is that your dad is an adult and will make his own decisions regarding his health. NO MATTER WHAT YOU DO. You are not responsible for him. 



He is and he will resent it if you interfere too much before he is ready. Would you want someone else to tell you what to do? Good luck and I hope you were not offended by my comments. Remember to change the things you can and to accept those you can't. Ultimately, it is his decision to go gf or not.

 

***This member sent a file regarding Gluten-Sensitive Disease with Mild Enteropathy.  I don't know how to copy this to word, so if you want a copy, I can forward her e-mail.***

 

#19)  TELL YOUR FATHER THAT A 400 LB PERSON CAN HAVE CELIAC IT'S IN THE DR JOSEPH MURRAY.  ONE CAN HAVE SILENT CELIAC NO SYMPTOMS BUT THE INTESTINE IS GETTING DAMAGED JUST THE SAME IT'S IN THE MARYLAND RESEARCH.   HE CAN GET LYMPHOMA (NO CURE) AND ALSO DAMAGE HIS INTESTINE SO BAD THAT HE'LL DIE 'CAUSE HIS DR WON'T PUT HIM ON TPN LIKE MY DR DID ME. TELL YOUR FATHER TO BE STRICTLY WHEAT AND GLUTEN FREE (NOTHING WITH RYE , OATS, AND BARLEY.



#20)  Just ask your Dad if it is possible to be " a little bit pregnant" sooner or later reality will become apparent!

 

#21)  You are correct-you either have celiac or you don't.  Now, the complicated part!  You can have mild or NO symptoms!  But, if you don't follow the gluten free diet very strictly, you will eventually get all the horrible side effects, and possibly DEATH!  Did he have a biopsy done, or just blood work?  I would highly suggest, that if he didn't have a biopsy, that he get one done.  That way, the flattened villi cannot be argued and he will have to admit that he has it (as well as his Dr.) As far as any sources in print, I am not sure.  You may email Dr. Alessio Fasano at the University of Maryland-he is an expert and will probably know of some published material.  

Good luck and don't give up!!

 

#22)  Can you be just a little bit pregnant?

Some pregnant women are horribly sick when in this delicate condition while others claim they never felt better, but all of them are pregnant.  It's the same with celiac some are dramatically, profoundly ill, some even die from it, while others are asymptomatic, but they all have it if they have it.

 

#23)  I don't know of anywhere that it states that you can have a mild form that allows you to continue eating glutens.  I DO know of places where it has stated that the longer you continue eating glutens when you are a celiac, the greater your chance of auto-immune disease and cancer, and I believe, pancreatic failure.  These articles are written by celiac researchers (such as Dr Fasano) and can be found in the archives under celiac research, I am quite sure.  

Possibly you could find a couple articles and print them out for your dad AND HIS DOCTOR!!!  By mild form, perhaps the doctor meant he exhibited a mild form of celiac disease.  This should not be misconstrued to mean there are mild forms which do not require adherence to the diet, however.  (But some people hear what they want to hear sometimes, unfortunately.

 

#24)  Hi Sidona: You were very helpful to me three years ago when I was first diagnosed.  I do think there can be varying degrees of intestinal damage, not varying degrees of the disease.  I do believe you either have it or you don't.  I certainly have it and nearly died until I got diagnosed and now I find I am not a very sensitive Celiac.  I try to be as perfect as possible on my diet, but we all make unintentional mistakes.  I find that I do not react any more.  I have not tried to eat anything seriously laden with gluten to test this out, but I do know of a couple of errors I made in the past and I didn't react.  My brother was tested because he is my first degree relative.  His blood and biopsy were VERY positive but he is entirely asymptomatic.  His gastro told him not to worry! Or go on a diet unless he develops symptoms.  I couldn't believe that.  He is still eating everything with no problem.  My daughter also tested positive both blood and biopsy and now is on the diet but like me, she rarely reacts to an error.  My Mom died of intestinal cancer after a couple of years of complaining of intestinal problems.  She was 88 years old and I now feel quite certain she too was a Celiac.  Hope this helps

 

#25)  My gastroenterologist mentioned a form of CD known as "short segment celiac disease", which I understand to mean that only a small segment of the small intestine(the initial segment) is affected by the disease and that the patient may be essentially symptom-free.  My mother, I suspect, has this form of CD, but at the age of 80, why bother to change her diet so drastically?  I have the full-blown version with all the bells and whistles, as does my son.  My daughter, diagnosed simply to set up a family history of disease prevalence, has no symptoms other than anemia and mild constipation, but her endoscopy showed chronic, severe inflammation and her blood tests were high positive.  If it weren't for her mother's insistence, she would have gone through her life undiagnosed, like most folks, I suspect.

 

#26)  ***Here's a web-site someone sent:

 

C:\Documents and Settings\Sidona Ryan\Local Settings\Temporary Internet Files\Content.IE5\F6YGEMRX\sprue (1).html

 

 

#27)  Laura Yick said to check out her article at this celiac web-page:

 

http://www.celiac.com/cgi-bin/webc.cgi/st_main.html?p_catid=6

 

* Please remember some posters may be WHEAT-FREE, but not GLUTEN-FREE *