<<Disclaimer: Verify this information before applying it to your situation.>>

I hope you don't get double e-mails.  I had listed summaries 1-27.  I was sent an e-mail that my summary was rejected.  So, I resent them and spread them out on more e-mails.  Then my first e-mails "did" go through.  Go figure.  After reviewing them, A portion of it was lost.  Below is that portion:



Sorry for any confusion.  There shoudl be 1-27 and 1-2 that thought there could be mild cases. 



Sidona



#8)  Unless a doctor has Celiac Disease themselves, they will never understand.  You could go to a local support group and listen to everyone's story.  You'll find that everyone is different with different reactions.  Yes, once you have it, you have it for life but there are so many factors involved with the symptoms that it cannot be singled out to be seen as the same for everyone.  Our physiological, physical, etc., states all play a different roll.  If we are relatively healthy, the symptoms may be less.  Over time as other parts of the body start to fail or shut down, those symptoms can be more pronounced or even be pushed to the background due to other more demanding symptoms showing up.
       Sorry I can't be more definitive but that seems to be how it works with the group of 25 that I have been working with for the last three years.  Good Luck

 

#9)  The quickest way to resolve this is to persuade your dad to have Dr. Fine's tests, including the gene test.  Then he (or you by e-mail) can correspond with Dr. Fine about exactly what the results mean.

My daughter had this "poop test".  All you have to do is poop in the container, call the Air Express Company, they come get it and send it 
back to Dr. Fine's lab.  It costs $200.00 and she didn't bother to harass her insurance company to cover it.

She found that she inherited TWO genes, which means that she inherited one from each parent (not JUST me, who is biopsy dx'd).  She had no symptoms or damage of the disease, but the implication is that a trigger could set it off.  Because of this, she avoids gluten products almost all the time.  She is aware of what symptoms could be, etc.

 Meanwhile, her 4 year old is allergy/gluten sens. free, while her 18 mo. old just had traditional gluten blood tests and allergy tests.  He 
was found to be neg. on celiac, but allergic to wheat and eggs.  So she is avoiding wheat for him anyway.  And she really knows how to do it, like you do.

Under her circumstances, she feels confident that she is doing all she can, or needs to, to discourage the "trigger".  Of course, there are 
other triggers besides food.

 

#10)  Actually, no one knows.

The doctor undoubtedly meant that your father didn't have the classic celiac symptoms of severe diarrhea, etc. The issue is whether someone with mild symptoms has the same risks of CD side effects that someone who is severely symptomatic does. A recent good study from Italy shows that uncontrolled celiacs have twice the death rate of the normal population (mostly from cancer). The death risk
returns to normal after about three years on the GF diet. So these side effects are no joke.

Since no one has done a study showing that celiacs with mild symptoms are at any lower risk of these side effects than the severely symptomatic, simple prudence dictates that anyone with CD should be strictly GF.

 

#11)  Well, certainly, some people have more severe damage from celiac disease than others, if the degree of destruction of the villi is the standard of reference.  This may be what your father's doctor was referring to, if he did a biopsy.  There are 5 stages recognized in the progression of the disease as reflected in the villi, from mere infiltration of lymphocytes (stage I) to total flattening of the villi (stage V)  It may reflect how long the celiac disease has gone untreated, or the person's individual susceptibility.  But if diagnosed as celiac, no matter the degree, the treatment is the same- total abstinence from gluten!  Who would want the disease to progress?  It doesn't take much gluten to induce the cascade leading to damage- 10 mg/day or less.

And you can see from Laura Matsui's note today, that there are varying degrees of positivity by blood test.  The blood tests aren't 100% reliable, nor are the biopsy, to complicate the matters, though the EMA and tTg tests are pretty good.

But certainly, as you say, the symptoms may be mild.  Research from the University of MD which has yet to come out in print found that 50% of relatives of celiacs who were diagnosed as celiac reported NO symptoms (asymptomatic).  That is a most remarkable finding- but please don't quote me on it, because it's not out in print yet.   These people were only picked up because they were screened because of their known genetic risk.  Makes you wonder about everyone else out there (like your Dad!)

 

#12)  doctor fine writes standard language on his test results that any intolerance is complete intolerance

 

#13)  I kind of think it is like diabetes -- it's a disease that starts slow and builds.  So at the early stages, there isn't MUCH damage or many symptoms. If the person doesn't eat a lot of gluten, it kind of doesn't progress quickly. If they eat a lot of gluten, it gets worse quickly. Diabetes can stay at a 'low level' (blood sugar not TOO messed up) for a long time if the person eats right, but every time they eat sugar it hurts their bodies.  Ditto with celiacs.



But the death rate goes up regardless, if any gluten is eaten - there are too many interactions with lack of nutrients etc. See attached PDF. If you have any celiac reaction, and eat gluten, you are at risk for a lot of diseases (not to mention aches and pains -- my arthritis is GONE!  Going GF).

However, what I found was that when I *cut down* on gluten I started feeling so much better (and paying more attention to symptoms) that eventually I got rid of all of it.

Most of my family has celiac symptoms but won't get tested. My Mom says she probably reacts to gluten but that she's too old to worry about it now. My brother says he'll worry about it when he has to. No one wants to give up their gluten ... I think the stuff IS addicting.

 

****This list member sent me a file on Death Rate among celiacs.  It's in Adobe.  I don't know how to forward it to I'll type in the web address that was at the bottom of the document:

 

http://www.glutino.com/english/interieur/article/view_article.cfm?art_id=99

*Support summarization of posts, reply to the SENDER not the CELIAC List*