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As a 64 year old lifelong Celiac, officially diagnosed 35 years ago with a
biopsy, and a just bearly living "Refractive", I feel somewhat qualified
to answer the question.

Jane Ehrenfeld ([log in to unmask]) posed the question in a recent
digest.

Jane, if you look up the word refractive in the dictionary it would say
simply " out of control or unmanageable". Practically, it means that the
bowel has become so inflammed that it sees more products other than gluten
as the enemy. In my case, fats, dairy, nuts, corn, veggies with hulls (like
sweet peas) are no-no's. It becomes almost impossible to eat anything.
Elaine Gottschall's diet is the only thing that has kept me alive.

Unfortunately, it is difficult for me to gain weight on the diet, so I have
lost 25 pounds and got so weak that my GI and PCP decided to put me into
the hospital for some R and R. They stopped my food intake and put me on an
intravenous feeding of lipids (fats) and a large number of vitamins and
minerals for 10 days. I was also put on 60 mg of Steroids (Prednesone). My
weight gained about 1 lb for each day in the hospital. They let me go home
when I proved I could eat solids without diarrhea. The prognosis by the U
of I staff is that I will ultimately die of lymphomia of the gut.
Fortunately, I'm not showing any signs of that right now.

Jane, you asked, "what can you do to avoid the refractory stage".  My answer
has to be don't eat any gluten.  I cringe with the discussions currently on
our digest about what is the minimum amount of gluten that can be eaten
safely.  Your thoughts, and that of any other Celiac, should be on
discussions and actions that prevent any digestion of gluten though the
mouth, nose, skin and any other possible absorbtion spot on your body.  35
years ago my GI was so ignorant that he actually told me to use my Celiac
disease as a weight control.  I.e., eat gluten to lose weight and don't eat
it it to gain weight.  It worked too, I had the perfect 175 lb body.  When I
hit age 60 I was also the perfect refractive Celiac, from 30 years of abuse
to my gut.  In my opinion, there is no safe amount because although you may
not have a reaction, it is silently taking it's toll by damaging your gut.
Licking a stamp will put me down for a couple of days.  How much gluten is
that?

On a happier note, I am up and mobile now, still on 30 mg of Prednesone/day
and probably will have to stay on a maintenance doseage for the rest of my
life. I'm a fortunate guy in that I enjoy the benefits of a practicing RN
wife who has recently become a very knowledgeable dietician. She has become
a Gottschall fan and keeps her book in the kitchen for daily referral.
Because of this I feel that I have a lot of life yet to live, but I'm very
concerned for all of the rest of you not so blessed. My best advice is if
it comes out of a box, "Don't eat it", especially if it has more than 3
ingredients" (The best of my Celiac Support group quotes). Don't trust what
the manufacturers say, they don't have to tell you what is in 2% of the
product, and many of us can react to that mimimal amout whatever it is. I'm
sure many of them are honest and truthful but which ones? I don't trust
anyone one of them anymore, its to risky.

Jane, after reading what I have just typed it sounds a bit morbid, but
unfortunately, for us Celiacs it is or should be considered a serious
disease. Please feel free to contact me privately if you would like. That
goes for any of the rest of you too! Good Luck, Jerry