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Now I have another question about not healing.  I believe my group of
problems might be even more common than refractory celiac, but does not
involve inflammation of the villi.  
I had a biopsy after 13 years of being gluten free.  I was getting
progressively worse with adrenal problems, neuropathy of the autonomous
nerves (those that control things like blood pressure, heart, lung and other
involuntary systems.)  I was really worried about that.  I was so weak and
could not live a normal life and was getting worse rather than better, being
unable to eat more and more foods because of symptoms like headaches with
dairy, body pain with soy, weakness with legumes and corn, then I would get
really weak from just about every fruit.  The biopsy revealed that I had "a
paucity of duodenal folds with ridging typical of celiac disease".  There
was no inflammation, so my gastro said that I did not have celiac.  Sigh.  I
tried to explain that after 13 years of strict adherence to the diet, I
should not have inflammation.  He was not moved.  (Doctor Peter Green, in a
phone conversation, felt that I did have celiac with those results).
Anyway, something was still going on that prevented me from healing
something in me.  My local gastro found had GERD, gastritis, and irritable
bowel syndrome, which is a catch all and then referred me to a psychiatrist.
Anyone that did not agree with him must be nuts, right?

I found a wonderful doctor at Thomas Jefferson University hospital in
Philly, PA.  He ordered me onto the Specific Carbohydrate diet.  I was not a
happy camper, but what else was there to do?  Leaky gut was suspected and
perhaps intestinal bacteria or fungi that did not show up in the tests.  I
could not eat most of the foods on the SCD diet, but he insisted that
although limited, I eat those foods I could that are legal on the diet and
see how I did.  I have stayed on it religiously for almost 2 years and have
gradually gotten my health back.  The neuropathy which was there in 2001 and
worsening in 2004 was tested a third time a few weeks ago and it had
disappeared.  (The neurologist said that it was caused by celiac disease) I
thank God and the SCD program for this healing.  I am now slowly adding back
foods I have not been able to eat in many years.  Another thing he put me on
was something called "No Fenol" by Houston Nutraceuticals (I have no
financial interest in this company) which helps process the Phenols found in
many foods.  This has been a real boost to me.  Anyone having difficulty
digesting foods or having reactions to foods might check out Dana's View on
the internet which tells about phenol foods.  She addresses children's
needs, but it is the same for adults, except that like celiac, symptoms
might be different and varied.
  www.danasview.net/phenol.htm
Bringing these up on the celiac site might seem like a different topic, but
many celiacs have the same problem that when going gluten free, they find
that now they are getting reactions to more foods and this needs to be
resolved.  I believe it is another symptom of celiac.  I know that when I
was first on the list I did not like people telling me that I should do the
SCDiet.  When I decided to do this, I had requests asking me to please
report back what the results were.  So here are the results.  Also, because
of weakness, I could not exercise.  It was too much for me.  Now I am doing
an hour at the gym 3 times a week. Although I still get tired, I am not
exhausted, and I am getting stronger, whereas before, short (10
minutes)periods of exercise would leave me exhausted and suffering for 3-4
days afterwards.  I don't know how long I will have to stay on this SCD
before I can go back to being just gluten free, but I believe it will be
another 2 years.  I must tell you that I am 68 years old.  Blessings, Carol

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